Rapid Responses to:

PRIMARY CARE: Rosalind Raine, Simon Carter, Tom Sensky, and Nick Black General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study BMJ 2004; 328: 1354-1357 [Abstract] [Full text]

Rapid Responses: Submit a response to this article

Rapid Responses published:

Some serious problems in Doctors' attitudes towards ME/CFS sufferers uncovered.

Angela Kennedy   (28 May 2004)

Afraid to see GP

Deborah A Storey   (29 May 2004)

The antidote for stereotyping

Douglas T Fraser   (1 June 2004)

"Pressure Groups" politicising the field?

Chris Clark   (1 June 2004)

BMJ....

DJ Miller   (2 June 2004)

Doctors and Patients in Partnership

Joseph Marsh   (2 June 2004)

Turning the clock back on ME/CFS

Dr Charles B Shepherd   (2 June 2004)

Patients speaks .... but will you listen?

Emma J Tugwell   (3 June 2004)

Primary Care is failing the house and bedbound

Simon Lawrence   (3 June 2004)

Re: Some serious problems in Doctors' attitudes towards ME/CFS sufferers uncovered.

Angela D Flack   (3 June 2004)

Some worrying doctor's attitudes towards ME/CFS sufferers uncovered

Angela P. Kennedy   (4 June 2004)

no surprises there

Annette Barclay   (4 June 2004)

Medical Correctness

Barrington Johnson   (4 June 2004)

Re: Medical Correctness

Peter Culdrose   (4 June 2004)

Re: Medical Correctness

Angela P. Kennedy   (4 June 2004)

Re: Medical Correctness

Hayley Klinger   (5 June 2004)

Re: Medical Correctness

B.N. Basinger   (5 June 2004)

Re: Re: Medical Correctness

Ian T McLachlan   (5 June 2004)

Psychiatric/physical debate unhelpful

Will Johnston   (5 June 2004)

Re: Re: Medical Correctness

Ann E Appleton, Cheshire   (5 June 2004)

Re: Medical Correctness

Suzy Chapman   (5 June 2004)

RE: Medical Correctness

Tom P Kindlon   (5 June 2004)

Re: Medical Correctness

Diane Newman   (5 June 2004)

Re: Medical Correctness

Jessica N Wilkinson   (5 June 2004)

Why does IBS "cause GPs less difficulty"?

Andrew Stainer-Smith   (5 June 2004)

Re: Psychiatric/physical debate unhelpful

Victoria M Loughlin   (6 June 2004)

Some Doctors Fail ME/CFS Patients

Jane Bryant   (6 June 2004)

Re: Medical Correctness

L. S. Lodico, MD   (6 June 2004)

Re: Medical Correctness

N Portman   (7 June 2004)

Box message needs correction ?

Dr. Naseem A. Qureshi, MD, IMAPA, LMIPS   (7 June 2004)

Grey areas at the interface of psychiatry and medicine?

Dr. Naseem A. Qureshi, MD, IMAPA, LMIPS   (7 June 2004)

Re: Re: Medical Correctness

Jean E Long   (7 June 2004)

Re: Psychiatric/physical debate unhelpful

Douglas T Fraser   (7 June 2004)

GP's can be better informed

Duncan Cox   (7 June 2004)

Re: Medical Correctness

Geoff Sullivan   (7 June 2004)

Different disorders?

Joan T McClusky   (7 June 2004)

Please believe psychiatrists with CFS

Ellen Goudsmit   (7 June 2004)

Re: Grey areas at the interface of psychiatry and medicine?

Angela P. Kennedy   (7 June 2004)

Don't ignore the facts

David W Jameson   (7 June 2004)

Medical correctness and evidence based medicine

Peter D White, Simon Wessely, Michael Sharpe   (7 June 2004)

Re: Barrington Johnson

Vicky-Louise Ling   (8 June 2004)

Re: Re: Grey areas at the interface of psychiatry and medicine?

Dr.Naseem A. Qureshi MD, IMAPA, LMIPS   (8 June 2004)

CFS/ME, “bodily location of illness” and mental health interventions

A Chaudhuri   (8 June 2004)

Re: Medical correctness and evidence based medicine

Jane Bryant and Angela Kennedy Bryant & Kennedy   (8 June 2004)

Re: Don't ignore the facts

Ellen Goudsmit   (8 June 2004)

Risks associated with exercise programmes need to be recognised and investigated further

Tom P Kindlon   (8 June 2004)

The thyroid in chronic fatigue

Bo Wikland, P.O. Box 1417, SE-111 84 Stockholm, Sweden   (8 June 2004)

And still the debate rambles on

Jean E Long   (8 June 2004)

Effective Treatment?

Kelwyn D Williams   (9 June 2004)

Re: Effective Treatment?

Geoffrey Sullivan   (9 June 2004)

The mysterious Barrington Johnson

Adam Jacobs   (10 June 2004)

Jam on both sides?

Suzy Chapman   (10 June 2004)

Re: Medical correctness and evidence based medicine

Douglas T Fraser   (10 June 2004)

Re: Don't ignore the facts

Erik R Johnson   (10 June 2004)

Re: And still the debate rambles on

Erik Johnson   (10 June 2004)

Re: Re: Re: Grey areas at the interface of psychiatry and medicine?

Erik Johnson   (10 June 2004)

Re: Re: Don't ignore the facts

David W Jameson   (10 June 2004)

Re: Don't ignore the facts

Erik R Johnson   (11 June 2004)

Re: Re: Don't ignore the facts

David W Jameson   (11 June 2004)

Unknown cause does not mean no treatment

Joan McClusky   (11 June 2004)

Evangelism and Tangents

Jean E Long   (11 June 2004)

Re: Re: Re: Don't ignore the facts

Jessica N Wilkinson   (11 June 2004)

Re: Re: Re: Re: Don't ignore the facts

Peter Culdrose   (12 June 2004)

Professor Wessely's Legacy

Erik R Johnson   (12 June 2004)

Endometriosis & Associated Disorders

Geraldine F O'Sullivan-Hogan   (13 June 2004)

Mr Jameson has no "facts", but a theory, his individual experience, and plenty of wishful thinking

Mike Neillands   (13 June 2004)

chalk and cheese

dougal jeffries   (13 June 2004)

re: Medical correctness and evidence based medicine

N Portman   (14 June 2004)

How much more proof do you need?

Erik R Johnson   (14 June 2004)

Re: chalk and cheese

Peter Culdrose   (14 June 2004)

Raine et al, the BMJ and "non-disease"

Veronica Gordon Smith   (14 June 2004)

Doctors please listen to your patients and treat them.

Jean E Long   (14 June 2004)

GPs are powerless without better models

Chris Burton   (15 June 2004)

Bumblebees Can't Fly!

Erik R Johnson   (16 June 2004)

Interesting coupling - IBS and CFS

John P Heptonstall   (16 June 2004)

Re: GPs are powerless without better models

Angela P. Kennedy   (16 June 2004)

The emperor's new clothes

David W Jameson   (18 June 2004)

Professor Wessely and Dr White's views

Erik R Johnson, Prof. Wessely - Dr Peter White   (18 June 2004)

Re: The emperor's new clothes

John P Heptonstall   (19 June 2004)

Re: Professor Wessely and Dr White's views

Douglas T Fraser   (19 June 2004)

Re: Re: Professor Wessely and Dr White's views

Peter Culdrose   (19 June 2004)

Re: Re: Re: Professor Wessely and Dr White's views

Stephen E Ralph   (20 June 2004)

mote and beam

Richard L Ensor   (21 June 2004)

Re: Interesting coupling - IBS and CFS

Peter Morrell   (21 June 2004)

Re: Re: Interesting coupling - IBS and CFS

John P Heptonstall   (22 June 2004)

Re: Professor Wessely and Dr White's views

Erik R Johnson   (22 June 2004)

Re: Re: Interesting coupling - IBS and CFS

Erik R Johnson   (22 June 2004)

Renaming CFS : Neuro-Immuno-Myo-Endocrinopathy (NIME)

Joseph . C . Obi   (23 June 2004)

Re: Re: Professor Wessely and Dr White's views

Peter Culdrose   (23 June 2004)

Re: Interesting coupling - IBS and CFS

Erik R Johnson   (23 June 2004)

Re: Renaming CFS : Neuro-Immuno-Myo-Endocrinopathy (NIME)

Erik R Johnson   (23 June 2004)

Can't see the wood for the trees

David W Jameson   (24 June 2004)

General Practitioners and Hospital Specialists Have Different Perceptions of Irritable Bowel Syndrome

Peter J Whorwell, Richard Lea, Lesley A Houghton, Jonathon Hasleton   (24 June 2004)

Re: Can't see the wood for the trees

Erik R Johnson   (24 June 2004)

Re: Can't see the wood for the trees

John P Heptonstall   (25 June 2004)

CFS Mechanism

Erik R Johnson   (25 June 2004)

Prof Wessely, Dr Whites Views - Courtesy

Erik R Johnson   (26 June 2004)

Re: Medical correctness and evidence based medicine

Douglas T Fraser   (26 June 2004)

General practitioners' perceptions of ME/CFS and beliefs about its management, as laid out by members of the Wessely school: qualitative study of subversion (Abstract)

Paul Lynch   (27 June 2004)

Re: Re: Can't see the wood for the trees

David W Jameson   (27 June 2004)

A Crisis in Confidence, The Widening Circle

Erik R Johnson   (27 June 2004)

More on leaky gut syndrome LGS

Peter Morrell   (28 June 2004)

Re: Re: Re: Can't see the wood for the trees

John P Heptonstall   (28 June 2004)

Re: More on leaky gut syndrome LGS

John P Heptonstall   (28 June 2004)

Is it any wonder GPs are confused, and are seen to have questionable perceptions of ME?

Jean E Long   (29 June 2004)

Taking responsibility for diagnosis and treatment

Victoria M Loughlin   (7 July 2004)

Possibility of more rapid recovery from CFS may change G.P.'s attitudes

Marilyn L. McNeill   (15 September 2004)

Some serious problems in Doctors' attitudes towards ME/CFS sufferers uncovered. 28 May 2004
Angela Kennedy, Social Sciences Lecturer Essex Send response to journal: Re: Some serious problems in Doctors' attitudes towards ME/CFS sufferers uncovered.	This is indeed a very interesting study, that allows the reader a glimpse of some of the belief systems in operation within the British Medical Profession around ME/CFS. There are a number of points to make about this particular project, and its relevance to the ways in clinical guidelines are developed: 1.As with all research that is published in the third person, the reader has to rely on the mediating interpretations, by the researchers, of the responses under study. Even with this in mind, however, it is clear that some of the doctors under study (the response group) exhibited a worrying tendency to confuse Myalgic Encephalomyelitis, for which Chronic Fatigue Syndrome is merely another name, with Chronic Fatigue, a different condition. ME/CFS is classified in the WHO ICD-10 as a neurological disease (G93.3), whereas Chronic Fatigue is classified in ICD-10 as F48 (a mental disorder). It appears from anecdotal evidence that this is a common misapprehension among doctors. This may well be in part due to the misinformation that was promoted by the WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College London, in their publication the 'WHO Guide to Mental Health in Primary Care', and on their website. Some psychiatrists have been (incorrectly) using the two terms interchangeably for some time. This incorrect information had eventually to be clarified (and ultimately corrected) by Lord Warner, at the instigation of the Countess of Mar, earlier this year. (1) The lack of knowledge by the respondents about the neurological features of ME/CFS was quite astounding, with one doctor bemoaning the lack of ‘precise location’ of ME/CFS because it “isn’t like a broken leg”. In fact, the authors themselves appear unaware of this major issue, and therefore have been unable to clarify whether they or the responding doctors are actually discussing ME/CFS sufferers, or sufferers of Chronic Fatigue. For the purposes of this discussion, I am assuming that they mean ME/CFS sufferers 2. Some of the response group also exhibited clear tendencies to socially construct ME/CFS sufferers as ‘deviant’, another worrying development within many in the medical profession in recent years. (2, 3) ‘Deviant’ personality categories were assigned to ME/CFS sufferers. The social and material inequalities experienced by ME/CSF sufferers, because of the social stratification and resulting prejudices arising from such cultural constructions of ‘deviance’, based on health status, has been enormous, (4, 5) and the attitudes and beliefs of the respondents in this study yet another illustration of this. 3. Raine et al describe both the patient’ and ‘doctor’ as violating expected roles in the case of ME/CFS. My concern here is firstly that the socially constructed ‘roles’ themselves were not critically interrogated at all within this article. Earlier in the article the authors describe ME/CFS sufferers as ignoring the “normal obligation of the ‘sick role’ to make every effort to get well as possible”. Of course, ME/CFS sufferers are not the only people who do not get well easily, if at all. By the rationale inherent in this theme, Doctors would describe many of their patients as ‘heartsink’, for example: AIDS sufferers, Cancer sufferers, Asthmatics, Congestive Cardiac Failure sufferers, MS or Parkinson’s or Alzheimer sufferers, to name but a few. The fact that such a prejudicial term is applied to ME/CFS sufferers, but NOT AIDS or cancer sufferers, for example, is highly significant. Although some of these illnesses have been subject to detrimental cultural construction in the past, work such as Susan Sontag’s (6) has changed that. ME sufferers now appear to be suffering from prejudice from certain members of the health professions, that would not now be tolerated against sufferers of these illnesses. (7) Interestingly, Raine et al did not elaborate on how doctors ‘violate’ their expected roles. A further discussion of this would have allowed deeper levels of understanding as to the decision making process by doctors with regard to CFS, and how this can be improved. 4 An interesting theme that arose was the hostility and resentment expressed by some of the respondents towards ME/CFS self-help and pressure groups. This is of course highly ironic, especially when the British government are currently promoting the concept of the ‘expert’ patient. As with other highly politicised illnesses (such as AIDS), pressure and self help groups have arisen to advocate for patient’s rights and provide support and advice, because of the shortfall of agencies such as the health service and benefits agencies, and the social exclusion suffered by ME/CFS sufferers, some of the very reasons for this uncovered both in this correspondence and in Raine et al’s article itself. 5. The authors of this article were uncritical of the ‘mental health interventions’ that have been promoted by some as a ‘treatment’ for ME/CFS. They appeared unaware of the intense controversy over these treatments, including the evidence that there is little or benefit to many patients from them, and that these interventions may actually be harmful to patients (for example see 8, 9, 10, ). What was also of concern was that the doctors themselves appeared, from the article’s findings, unaware of these also, although it appears the patients and their advocates may be perfectly aware, hence their tendency of ‘non-compliance’. 6. As a qualitative social science researcher myself, I was fascinated by some of the responses, and I would have been very interested to have indulged in some further projects of discourse analysis of the responses, which I believe would have uncovered some of the deeper levels of meaning in the respondents’ answers, especially as situated subjects in the production of certain discourses of power. A Foucauldian discourse analysis (11) may well have been pertinent in this project, as well as a semiotic analysis of the thymic categories of euphoric (perceived as ‘good’) and dysphoric (perceived as ‘bad’) categories (12, 13) assigned by the doctors to both ME/CFS and IBS sufferers. These may well have provided some clues as to the how certain illnesses, such as ME/CFS for example, are socially constructed within the medical profession and society at large, and why the common experience of ME sufferers (including children) is one of social and material inequality and social exclusion, and hostility and disbelief from others, including health and social welfare professionals (14). 7. I do question the decision to elucidate comparative responses between ME/CFS and IBS, which, although a painful sometimes moderately disabling illness in which psychological and physiological aetiology is contested, nevertheless has a much better prognosis and much lower rates of disability than ME/CFS. More serious physiological illnesses where the physiological aetiology is NOT contested may have yielded more stark polarisations of doctor’s beliefs. On the other hand, the starkness of the polarisations even within this project were highly significant. 8. I agree with the author’s conclusions about the deeply held beliefs of doctors mediating their understandings of complex disease mechanisms. In the case of ME/CFS, these have led to many serious problems in the way sufferers are treated, and an improvement in knowledge about this misunderstood illness is vital. This will need to involve the widespread correction of many instances of misinformation being propagated throughout the medical profession, and this is where the issue become highly politicised, which presents major problems for sufferers, the field of medicine and governments. What is clear though, is that patients, in Britain and internationally, are no longer prepared to continue to suffer because of these problems, hence the rise and rise of politically astute patients and advocates. REFERENCES 1. See for example, Hansard: http://www.publications.parliament.uk/pa/ld199900/ldhansrd/pdvn/lds04/ text/40122\ -12.htm#40122-12_unstar0. 2. See “The Doctors Say Psychosomatic, What Do They Mean”: http://www.theoneclickgroup.co.uk/documents/ME- CFS_docs/When%20Doctors%20Say %20Psychsomatic,%20What%20Do%20They%20Mean.doc 3. See my own BMJ Rapid Response “Re: Your own worst enemy” (Angela Kennedy) at : http://bmj.bmjjournals.com/cgi/eletters/327/7429/1449#44881 4. Munson, P. (2000) Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, Haworth Press, New York. 5. Hyde, B. Bastien, S. Jain, A. The Clinical and Scientific Basis of ME/CFS (1992) Nightingale Research Foundation, Canada. 6. Sontag, S. (1991) “Illness as Metaphor” and “AIDS and Its Metaphors”, Penguin, London. 7. See “The distortion of holistic approaches to health care in ME.doc”:http://www.theoneclickgroup.co.uk/documents/ME- CFS_docs/The%20distortion%20o f%20holistic%20approaches%20to%20health%20care%20in%20ME.doc 8. Carruthers et al (2003) “ Myalgic Encephalomyelitis/chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” Journal of Chronic Fatigue Syndrome, VO. 11 (1) 2003. 9. Van Hoof, E. “Cognitive Behavioural Therapy as Cure-All for CFS” Journal: Journal of Chronic Fatigue Syndrome, Vol. 11(4) 2003, pp. 43-47 10. Van de Sande, M. (2003) “ME/CFS Post-Exertional Malaise / Fatigue and Exercise” Originally printed in "Quest", the newsletter of the National ME/FM Action Network, 3836 Carling Ave., Nepean ON K2K 2Y6, Canada. Available online at: http://www.mefmaction.net/default.aspx?Page=selectedarticlesmedical 11. Foucault, M. The Archaeology of Knowledge (1985) Routledge, London. 12. Martin, B. Semiotics and Storytelling: an Introduction to Semiotic Analysis (1997) Philomel, Dublin. 13. This method is practised by the Paris School of Semiotics, founded by A.J. Greimas: see Martin, B. Ringham, F. Dictionary of Semiotics (2000) Cassell, London. 14. TYMES Trust publication, “The Forgotten Children: A Dossier of Shame” available online at: http://www.tymestrust.org/pdfs/theforgottenchildren.pdf Competing interests: Carer, Sociology Researcher, Co- Director of the ONECLICK Group.
Afraid to see GP 29 May 2004
Deborah A Storey, Parent N/A Send response to journal: Re: Afraid to see GP	We are a family living with Asperger Syndrome, and ME/CFS. Not only are GP's failing families needing support for ME they are equally failing families who need multi-agency services for Asperger Syndrome. If families are being denied health services for long term input for Autistic Spectrum Disorders the neglect is compounded when faced with the additional conundrum of ME/CFS. Without informed GP's and Health Professionals, Education becomes a mine field that families are simply unable to navigate. This situation is so serious that families are becoming subjects of Child Protection proceedings and experts in both chronic conditions are being dismissed, their extensive knowledge ignored in favour of the bad parenting, and using children to gain attention for parents own need judgements. These conclusions are reached by ignorance to the medical needs of both conditions and refusal to accept expert input or research current publications and appropriate interventions. Any family's first point of contact is their GP, if the understanding of a recognised Sydnrome is being neglected families are being left in serious danger. The implications of the many co-morbidities of Asperger Syndrome those that are recognised and documented are anxiety and depression. How can GP's justify ignoring expert opinion and input leaving families vulnerable, when in too many cases the families have been denied multi-agency care for years? The situation is left unsupported until today's crisis becomes tomorrow's headline. Rather than the neglectful actions of professionals from every service becoming public, it is easier to cover up the failure by turning it back on the parents and making it a Child Protection issue. If a GP is not confident that they are informed enough to take the necessary steps to protect the family, or feel it is out of their remit then it is inexcusable to leave the family feeling isolated and afraid of seeking medical attention. In this situation a safe and justifiable action would be to refer on to those who do have the expertise rather than believe those persecuting the family yet not medically qualified to make this assumption that it is simply a case of difficult uncaring parents especially when one parent also has Asperger Syndrome. The anxieties that are part of Asperger's are not taken in the right and fair context but used against the parent as proof of abuse; the years of experience said parent has gained by living personally with the Syndrome are also used a proof of abuse because the parent is too informed about a medical condition. The failure to act early to diagnose and the continued failure to offer medical support first and foremost following diagnosis, added to inability to provide suitably qualified services is continuing inspite of Autism becomingly widely recognised. This leaves us with serious questions needing answers. Why with the increase in the Autistic population are GP's and Hospitals not better prepared and better informed? Why with ME/CFS gaining recognition and better understood is the same thing happening? Competing interests: None declared
The antidote for stereotyping 1 June 2004
Douglas T Fraser, Violinist London W6 Send response to journal: Re: The antidote for stereotyping	Editor- In case readers of the BMJ evaluate this article by Raine et al without first learning something of the nature of ME/CFS, may I point out that the following list of replicated findings appears on the MERGE website (1): ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ "Physiological and biochemical abnormalities found in groups of patients meeting the broad criteria for 'CFS'. Example references are given in the brackets. BIOCHEMICAL Oxidative stress — explained on the next page (Richards et al., 2000; Manuel et al., 2001; review by Pall, 2001; Kennedy et al., 2003; Vecchiet et al., 2003) Dysregulation of anti-viral pathways — i.e., abnormal activity of the anti-viral immune responses (Suhadolnik et al., 1994; De Meirleir et al., 2000; Tiev et al., 2003) VASCULAR (relating to the circulation) Endothelial dysregulation — i.e., abnormal responses of small blood vessels selectively to acetylcholine (Spence et al., 2000; Khan et al., 2003 and 2004) Altered brain perfusion — i.e. areas of reduced blood flow in the brain (Ichise et al., 1992; Costa et al., 1995; Tirelli et al., 1998) Orthostatic hypotension — i.e., physiological changes to blood pressure/cardiovascular mechanisms on standing (Streeten et al., 2001; Naschitz et al., 2002; Stewart et al., 2003) BRAIN Metabolic abnormalities — e.g., alterations of brain choline (important in brain function) (Tomoda et al., 2000; Puri et al., 2002; Chaudhuri et al., 2003) MUSCLE Altered metabolism — e.g., changes in muscle composition or use of fuel (Fulle et al., 2000, Vecchiet et al., 2003, Fulle et al., 2003) Abnormal response to exercise (Lane et al., 1998; Paul et al., 1999; McCully et al., 2004) Enteroviral sequences in muscle — i.e., evidence of a persisting virus in some CFS patients (Lane et al., 2003; Douche-Aourik et al., 2003)" ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Ensuring that GP`s are kept up to date with reliable scientific facts of the matter would be a start, but clearly a more effective way to combat the negative stereotyping of others will ultimately be found through the proper and generous funding of biomedical scientists, many of whom are already doing excellent work to unravel causal and other mechanisms in ME/CFS, on a shameful shoestring. Sincerely, Douglas T Fraser 1.http://www.meresearch.org.uk/melibrary/publications/advances.html Competing interests: None declared
"Pressure Groups" politicising the field? 1 June 2004
Chris Clark, Chief Executive Action for M.E. Send response to journal: Re: "Pressure Groups" politicising the field?	It was very disappointing to see the comparison of GP’s attitudes between patients with CFS/ME and IBS. Particularly disappointing was that the study was conducted in the months after the Chief Medical Officer recognised – with considerable attendant publicity - the severity and impact of CFS/ME on the lives of those affected. One outcome of the study was that pressure groups were perceived as influencing clinical encounters, making it harder to legitimise the symptoms. It was interesting in itself to see patient organisations labelled by the authors as “pressure groups”. In fact the organisations cover a spectrum of views on the illness and the solutions needed. In our own case we carry out an information role for patients and professionals and provide a range of services no different from that of any other medium sized charity. (see www.afme.org.uk ) We campaign vigorously of course for recognition of CFS/ME and for funding to remedy years of neglect in this field. We are not “anti doctor” and our members mostly view their GP’s as supportive and understanding, but faced with a complex illness, lacking a toolkit to help. Despite this a commonly expressed view of a good doctor can be identified, through the typical statement reported back by our members with slight variations: “I think you’ve got CFS/ME. I know there is no cure, and to be honest I’m not sure what will help you most, but let’s both try and find out and see if we can work this through together.” Far from patient organisations wishing to politicise the consulting room, we simply ask for a little more understanding, mixed with a little humility and matched with an eagerness to obtain training and information about diagnosis and treatment. We do not seek a special status, just that people who are ill with CFS/ME should be treated with the standard of care and professionalism that the severity and impact of their illness merits. Is this politics? Chris Clark Chief Executive, Action for M.E. Competing interests: Chief Executive Action for M.E.
BMJ.... 2 June 2004
DJ Miller, disabled patient 60010 Send response to journal: Re: BMJ....	Congratulations BJM........ You've just identified the very problem YOU have created. Medical professionals read from editorial biased journals like yours, totally devoted to publish only articles with a psychological spin to them. And you wonder why there is so much discrimination You should take some responsibility and publish at least one scientifically based study that proves a real physiological abnormality, there are hundreds to choose from. Pay attention to all the feedback you get on this subject, and consider finding a medical editor that releases fair and balanced reporting. All I can say is thank God I'm an American. Competing interests: None declared
Doctors and Patients in Partnership 2 June 2004
Joseph Marsh, Development Officer, Sussex & Kent ME/CFS Society 4 Braemore Court, Kingsway, Hove, East Sussex, BN3 4GF Send response to journal: Re: Doctors and Patients in Partnership	We are a registered charity that informs, supports and represents many of the estimated 10,000 adults and children in Sussex and Kent that are affected by CFS/ME and as such have contact with hundreds of patients and professionals. Although there are some GPs that are having trouble managing patients with this illness, in our experience most doctors these days recognise CFS/ME as a serious organic illness and do their best to treat and support their patients. We accept that some CFS/ME patients can benefit from a specialised form of Cognitive Behavioural Therapy, but we would point out that many manage their illness very well without these types of interventions. Many patients are able to work in partnership with their doctors looking at different approaches that may help with controlling the symptoms of this illness and working towards improvement. Presently our organisation is working in partnership with two Primary Care Trust groups that are setting up specialist Multi-disciplinary CFS/ME services in Sussex and Kent. It must be said that those we are working with have been most helpful and have shown a genuine desire to see improved services for this previously neglected patient group. Any difficulties encountered by both patients and their doctors, just highlights the urgent need for research into this complex illness. www.measussex.org.uk Competing interests: None declared
Turning the clock back on ME/CFS 2 June 2004
Dr Charles B Shepherd, Medical Adviser, ME Association The ME Association, 4 Top Angel, Buckingham Industrial Park, Buckingham, MK18 1TH Send response to journal: Re: Turning the clock back on ME/CFS	Editor - Firstly, as a doctor with personal experience of this genuine and very disabling illness, I have encountered many of the negative observations expressed by my colleagues who participated in this study. And even though there are now many more who do not share their views, the media quickly picked up the negative stereotyping of ME/CFS patients to produce yet more unhelpful publicity about 'work-shy' individuals who were 'lacking in motivation' (1). Having failed to provide any proper balance by referring to evidence which does not support these views, or relevant conclusions contained in the 2002 Chief Medical Officer's report into ME/CFS, the authors should not be suprised to find that their paper has been very badly received by the ME/CFS patient community (2). Secondly, as a Trustee of The ME Association, I believe that the authors have seriously misunderstood the role of charities working in this difficult area of medicine. Yes, The ME Association campaigns and we recently presented around 30,000 signatures on a petition to the Prime Minister which called for urgent government-funded research into the physical cause of this illness - something which the Medical Research Council has so far refused to acknowledge as being of high priority. But The ME Association also plays a vital role in providing information to doctors, patients and researchers in the absence of any official sources taking a lead. In addition, we are actively involved with the Department of Health initiative to fund new clinical services for people with ME/CFS. Finally, as a doctor who likes to receive balanced information in the British Medical Journal, I was concerned at what appears to be a clear bias by the authors in favour of the psychosomatic explanation for ME/CFS. For example, they conclude that: 'For chronic fatigue syndrome and irritable bowel syndrome, effective management includes discussion about mental health interventions, particularly for patients who have responded poorly to other management interventions'. Yet the Department of Health and World Health Organisation both now accept that ME and CFS should be classified as neurological disorders under section G93.3 in the current International Classification of Diseases (ICD 10). Would the authors conclude that a patient with multiple sclerosis who was responding poorly to treatment should then be referred to the mental health services? I think not. Charles Shepherd References 1 Doctors unsympathetic to ME patients, research finds. Society Guardian 28 May 2004. Available on-line at: http://society.guardian.co.uk/health/story/0,7890,1227016,00.html 2 The MEA criticises new CFS/IBS paper in BMJ. MEA website announcement 28 May 2004. Available on-line at: http://www.meassociation.org.uk/fwhats_new.htm Competing interests: Person with ME/CFS who has no psychiatric co-morbidity
Patients speaks .... but will you listen? 3 June 2004
Emma J Tugwell, Patient RH14 9TB Send response to journal: Re: Patients speaks .... but will you listen?	I was diagnosed with CFS/ME in 2002. I have seen a number of Drs since being diagnosed. I became ill following a virus and have difficulty standing and walking. I was bed-bound for many months. These are some of the comments I have received from GPs: 'You will get better when you want to.' 'If someone offered you three times your last salary, I bet you would go back to work tomorrow.' 'There’s nothing wrong with you.' 'Go for a long walk – it wont kill you!' As a patient all I can say is that most GPs don’t have a clue about what it is like to be diagnosed with CFS/ME. Many get in a flap during consultations, they know something is wrong with the patient but don’t know what to do. Often Drs deal with this by making the patient feel like they are the problem rather than the lack of research, training and services. It’s frightening to suddenly become so ill that you can’t stand up, to loose your job, to fill sick day after day, month after month and to not get any recognition or support from the NHS. I have included some Patient Survey results from a Sussex and Kent ME/CFS Support Group below. Chronic Fatigue Syndrome/ME in Sussex 2002 Survey (1) Patient Satisfaction. There was a relatively low satisfaction level regarding medical care, with only 6% very satisfied and 60% not satisfied. Satisfaction was qualified by comments on the positive attitude of the GP or Consultant involved and the quality of care provided. Dissatisfaction was qualified by comments on the time taken to diagnose, the lack of knowledge about the illness, inadequate treatment and poor attitudes amongst the medical profession towards people with ME/CFS. References 1. http://www.measussex.org.uk/Sussex%20Research%20Proje Competing interests: None declared
Primary Care is failing the house and bedbound 3 June 2004
Simon Lawrence, Chairman - 25% ME GROUP SCOTLAND KA106SQ Send response to journal: Re: Primary Care is failing the house and bedbound	It is not surprising to see that this article referring to the Doctor/Patient conflict scenario. We as patients do have a problem with health professional who tries to 'palm' us off to the mental health side of the NHS. The problem is mainly due to ignorance and misinformation about the true nature and cause of the disease. ME is a neurological condition (ICD10 93.3. On the use of treatments, we undertook a membership survey about the use of Graded Exercise Therapy and of those who had used the 'treatment'(39%), of these, 82% were made worse. A similar result was found of Cognitive Behaviour Therapy. Certain organisations and doctors are advocating the use of these harmful approaches in ME, I would say, that these people/organisations are failing patients with ME. I know that the severely affected with this condition are especially neglected when it comes to patient care and the use of inappropriate treatment, but many are even refused a home visit, even though they are house and bed bound. In our survey we also found that 53% of membership had never had a home visit from a doctor. The NHS has a duty to care for all patients and it should be even more understanding and sympathetic to those who are severely debilitated by this condition. Conflict in any relationship is caused by not listening to the person in front of you, if you seek to impose something that is not in their best interest, and then it will cause anxiety and mistrust. Some GP's do their best to provide a 'duty of care', but this is not always the norm now days. Mainly because of pressure of time, but it is also because they are missinformed about this condition and because some do not listen and seek to understand the patient in front of them. Simon Lawrence Chairman - 25% ME GROUP - support group for the severely affected ME sufferer Competing interests: None declared
Re: Some serious problems in Doctors' attitudes towards ME/CFS sufferers uncovered. 3 June 2004
Angela D Flack, Trustee MEA voluntary Send response to journal: Re: Re: Some serious problems in Doctors' attitudes towards ME/CFS sufferers uncovered.	As someone who has been at the front of the coal-face of M.E.for nearly 15 years, l consider myself having seen many variations of this illness, that has no boundries as to where it will strike next, on whom or for how long < I have never been able to understand why, how the Medical Establishment would wish to use a concerted method of abuse, which results in, hurting patients,and damaging families, offer no help or hope,indefinately. Knowing the disquiet, and growing number of patients leading devastated lives, has not made any differance to the treatment dished out This situation has been allowed, to grow out of control, spearheaded by the opinions, of publicly verbaly insulting and abusive statements, with no independant scientific foundation, other then the original statement misleading that This immoral, behaviour, is very real, and very damaging, is being distributed far and wide through all channels, even spreading to other countriesall originating from the same source < M.E. is not a mystery illness, the only mystery is why the goverment and the MRC support attrocious,and damaging behaviour, by throwing our money at it for years and years, with almost no benefit, no cure, and no research into the physical causes and still no support. How many lives will be lost? before we are taken seriously, we are waiting....we are growing in numbers, we are no longer prepared to accept these unacceptable standards of care there are many of us and few of them. We are waiting for your response to our medical needs, M.E. is listed under G93 in the WHO Guide as a neurological illnes Angela Flack Mrs Declared interest Trustee of the M.E. Association Competing interests: None declared
Some worrying doctor's attitudes towards ME/CFS sufferers uncovered 4 June 2004
Angela P. Kennedy, Social Science Lecturer Essex IG8 9QX Send response to journal: Re: Some worrying doctor's attitudes towards ME/CFS sufferers uncovered	This is indeed a very interesting study that allows the reader a glimpse of some of the belief systems in operation within the British Medical Profession around ME/CFS. There are a number of points to make about this particular project, and its relevance to the ways in clinical guidelines are developed: 1.As with all research that is published in the third person, the reader has to rely on the mediating interpretations, by the researchers, of the responses under study. Even with this in mind, however, it is clear that some of the doctors under study (the response group) exhibited a worrying tendency to confuse Myalgic Encephalomyelitis, for which Chronic Fatigue Syndrome is merely another name, with Chronic Fatigue, a different condition. ME/CFS is classified in the WHO ICD-10 as a neurological disease (G93.3), whereas Chronic Fatigue is classified in ICD-10 as F48 (a mental disorder). It appears from anecdotal evidence that this is a common misapprehension among doctors. This may well be in part due to the misinformation that was promoted by the WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College London, in their publication the 'WHO Guide to Mental Health in Primary Care', and on their website. Some psychiatrists have been (incorrectly) using the two terms interchangeably for some time. This incorrect information had eventually to be clarified (and ultimately corrected) by Lord Warner, at the instigation of the Countess of Mar, earlier this year. (1) The lack of knowledge by the respondents about the neurological features of ME/CFS was quite astounding, with one doctor bemoaning the lack of 'precise location' of ME/CFS because it "isn't like a broken leg". In fact, the authors themselves appear unaware of this major issue, and therefore have been unable to clarify whether they or the responding doctors are actually discussing ME/CFS sufferers, or sufferers of Chronic Fatigue. For the purposes of this discussion, I am assuming that they mean ME/CFS sufferers 2. Some of the response group also exhibited clear tendencies to socially construct ME/CFS sufferers as 'deviant', another worrying development within many in the medical profession in recent years. (2, 3) 'Deviant' personality categories were assigned to ME/CFS sufferers. The social and material inequalities experienced by ME/CSF sufferers, because of the social stratification and resulting prejudices arising from such cultural constructions of 'deviance', based on health status, has been enormous, (4, 5) and the attitudes and beliefs of the respondents in this study yet another illustration of this. 3. Raine et al describe both the patient' and 'doctor' as violating expected roles in the case of ME/CFS. My concern here is firstly that the socially constructed 'roles' themselves were not critically interrogated at all within this article. Earlier in the article the authors describe ME/CFS sufferers as ignoring the "normal obligation of the 'sick role' to make every effort to get well as possible". Of course, ME/CFS sufferers are not the only people who do not get well easily, if at all. By the rationale inherent in this theme, Doctors would describe many of their patients as 'heartsink', for example: AIDS sufferers, Cancer sufferers, Asthmatics, Congestive Cardiac Failure sufferers, MS or Parkinson's or Alzheimer sufferers, to name but a few. The fact that such a prejudicial term is applied to ME/CFS sufferers, but NOT AIDS or cancer sufferers, for example, is highly significant. Although some of these illnesses have been subject to detrimental cultural construction in the past, work such as Susan Sontag's (6) has changed that. ME sufferers now appear to be suffering from prejudice from certain members of the health professions, that would not now be tolerated against sufferers of these illnesses. (7) Interestingly, Raine et al did not elaborate on how doctors 'violate' their expected roles. A further discussion of this would have allowed deeper levels of understanding as to the decision making process by doctors with regard to CFS, and how this can be improved. 4 An interesting theme that arose was the hostility and resentment expressed by some of the respondents towards ME/CFS self-help and pressure groups. This is of course highly ironic, especially when the British government are currently promoting the concept of the 'expert' patient. As with other highly politicised illnesses (such as AIDS), pressure and self help groups have arisen to advocate for patient's rights and provide support and advice, because of the shortfall of agencies such as the health service and benefits agencies, and the social exclusion suffered by ME/CFS sufferers, some of the very reasons for this uncovered both in this correspondence and in Raine et al's article itself. 5. The authors of this article were uncritical of the 'mental health interventions' that have been promoted by some as a 'treatment' for ME/CFS. They appeared unaware of the intense controversy over these treatments, including the evidence that there is little or benefit to many patients from them, and that these interventions may actually be harmful to patients (for example see 8, 9, 10, ). What was also of concern was that the doctors themselves appeared, from the article's findings, unaware of these also, although it appears the patients and their advocates may be perfectly aware, hence their tendency of 'non-compliance'. 6. As a qualitative social science researcher myself, I was fascinated by some of the responses, and I would have been very interested to have indulged in some further projects of discourse analysis of the responses, which I believe would have uncovered some of the deeper levels of meaning in the respondents' answers, especially as situated subjects in the production of certain discourses of power. A Foucauldian discourse analysis (11) may well have been pertinent in this project, as well as a semiotic analysis of the thymic categories of euphoric (perceived as 'good') and dysphoric (perceived as 'bad') categories (12, 13) assigned by the doctors to both ME/CFS and IBS sufferers. These may well have provided some clues as to the how certain illnesses, such as ME/CFS for example, are socially constructed within the medical profession and society at large, and why the common experience of ME sufferers (including children) is one of social and material inequality and social exclusion, and hostility and disbelief from others, including health and social welfare professionals (14). 7. I do question the decision to elucidate comparative responses between ME/CFS and IBS, which, although a painful sometimes moderately disabling illness in which psychological and physiological aetiology is contested, nevertheless has a much better prognosis and much lower rates of disability than ME/CFS. More serious physiological illnesses where the physiological aetiology is NOT contested may have yielded more stark polarisations of doctor's beliefs. On the other hand, the starkness of the polarisations even within this project were highly significant. 8. I agree with the author's conclusions about the deeply held beliefs of doctors mediating their understandings of complex disease mechanisms. In the case of ME/CFS, these have led to many serious problems in the way sufferers are treated, and an improvement in knowledge about this misunderstood illness is vital. This will need to involve the widespread correction of many instances of misinformation being propagated throughout the medical profession, and this is where the issue become highly politicised, which presents major problems for sufferers, the field of medicine and governments. What is clear though, is that patients, in Britain and internationally, are no longer prepared to continue to suffer because of these problems, hence the rise and rise of politically astute patients and advocates. ANGELA KENNEDY REFERENCES 1. See for example, Hansard: http://www.publications.parliament.uk/pa/ld199900/ldhansrd/pdvn/lds04/ text/40122\ -12.htm#40122-12_unstar0. 2. See "The Doctors Say Psychosomatic, What Do They Mean" http://www.theoneclickgroup.co.uk/documents/ME- CFS_docs/When%20Doctors%20Say %20Psychsomatic,%20What%20Do%20They%20Mean.doc 3. See my own BMJ Rapid Response "Re: Your own worst enemy" (Angela Kennedy) at : http://bmj.bmjjournals.com/cgi/eletters/327/7429/1449#44881 4. Munson, P. (2000) Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, Haworth Press, New York. 5. Hyde, B. Bastien, S. Jain, A. The Clinical and Scientific Basis of ME/CFS (1992) Nightingale Research Foundation, Canada. 6. Sontag, S. (1991) "Illness as Metaphor" and "AIDS and Its Metaphors", Penguin, London. 7. See "The distortion of holistic approaches to health care in ME.doc" http://www.theoneclickgroup.co.uk/documents/ME- CFS_docs/The%20distortion%20o f%20holistic%20approaches%20to%20health%20care%20in%20ME.doc 8. Carruthers et al (2003) " Myalgic Encephalomyelitis/chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" Journal of Chronic Fatigue Syndrome, VO. 11 (1) 2003. 9. Van Hoof, E. "Cognitive Behavioural Therapy as Cure-All for CFS" Journal: Journal of Chronic Fatigue Syndrome, Vol. 11(4) 2003, pp. 43-47 10. Van de Sande, M. (2003) "ME/CFS Post-Exertional Malaise / Fatigue and Exercise" Originally printed in "Quest", the newsletter of the National ME/FM Action Network, 3836 Carling Ave., Nepean ON K2K 2Y6, Canada. Available online at: http://www.mefmaction.net/default.aspx?Page=selectedarticlesmedical 11. Foucault, M. The Archaeology of Knowledge (1985) Routledge, London. 12. Martin, B. Semiotics and Storytelling: an Introduction to Semiotic Analysis (1997) Philomel, Dublin. 13. This method is practised by the Paris School of Semiotics, founded by A.J. Greimas: see Martin, B. Ringham, F. Dictionary of Semiotics (2000) Cassell, London. 14. TYMES Trust publication, "The Forgotten Children: A Dossier of Shame" available online at: http://www.tymestrust.org/pdfs/theforgottenchildren.pdf Competing interests: Carer, Social Science Lecturer and Researcher, Co-Director of the ONECLICK Group
no surprises there 4 June 2004
Annette Barclay, person with M.E. since epidemic in 1983/4 W1 Send response to journal: Re: no surprises there	I am grateful to the authors for confirming what many people with M.E. and CFS have known for a long time - that their GP's know less about the illness than they do and their GP's do not listen to or respect them. My own experience has been with GP's like the ones interviewed. They cannot understand the illness, feel that the patient is some how to blame and feel overwhelmed by the high level of disability. The problem is compounded by GP's who do not understand the difference between depression, chronic fatigue, chronic fatigue syndrome and M.E. When I explain to a new GP that I have M.E. as described by Ramsay they immediately think that I have simple fatigue. The result of this is that people with ME and CFS are denied basic medical care or forced into programs (GET, CBT) that harm rather then help the majority of people. I have lost friends with M.E. to suicide and complications of the illness. Because many GP's treat their M.E. and CFS patients with contempt and patronise them with psychobabble the patient ends up being denied basic medical care. After a recent road traffic accident a GP refused to refer me to a Hospital Consultant. I was told that the NHS was rationed and I would not need to be seen. My partner developed a minor running injury and was referred without a quibble. The GP had earlier refused a referral for a serious sinus infection claiming that sinus infections were "rare". The ENT consultant I eventually saw recommended surgery and was horrified that I had waited so long and been so ill. Until it is recognised that people with M.E. and CFS have an enforceable human right to competent diagnosis and treatment there will be no change in the system. We are dealing with a deeply entrenched attitude that some GP's simply do not want to change. Competing interests: None declared
Medical Correctness 4 June 2004
Barrington Johnson, Psychiatrist London Send response to journal: Re: Medical Correctness	Maybe the reason that people with 'Chronic Fatigue' or 'ME' are associated with negative stereotypes is that experienced doctors find that when they try to help, they don't. The medical model assumes that the patient wants to get better and that the doctor has the means to help this. Anyone who has dealt with these patients for any length of time knows that a high proportion of them have had deeply dysfunctional lives prior to their 'illness'. The secondary gain associated with 'medicalising' what is a psychological condition is immense, and leads to frustration on the part of patient and doctor. Saying that this problem is somehow the doctor's fault is absolving the patient of their part in this game, and perpetrating the myth of victimhood. I believe that in a future DSM chronic fatigue, anorexia, bullimia, and chronic pain will all be included under 'Personality Disorders' section. At the moment we are living in a naive atmosphere of 'medical correctness' where to suggest that some patients do not want to get better is seen as heresy. Competing interests: None declared
Re: Medical Correctness 4 June 2004
Peter Culdrose, Severe M.E. sufferer, previously television director sw1 1tq Send response to journal: Re: Re: Medical Correctness	Sir, I am appalled at the letter by Barrington Johnson. A typical stereotyped viewpoint from a psychiatrist who presumably knows absolutely nothing about M.E. His comments about M.E. patients "having previously that a high proportion of them have had deeply dysfunctional lives prior to their 'illness'" is deeply offensive and totally untrue. If he knew anything about M.E. patients he would know that prior to getting the physical disease most of them were high achievers and highly motivated. David Putnam the film director, Claire Francis the round the world yachtswoman are to prime examples that spring to mind. I trust that Barrington Johnson goes and does some useful work elsewhere. I also trust that he never develops the physical disease M.E. If he does he would realise how condescending and offensive his remarks are to M.E. sufferers. And as to his remarks that M.E. sufferers don't want to get well, this just beggars belief. What a menace psychiatrists are to real research into this crippling disease. Remember what their "profession" used to say about M.S and Polio? Peter Culdrose Severe M.E. sufferer Competing interests: None declared
Re: Medical Correctness 4 June 2004
Angela P. Kennedy, Social Sciences Lecturer Essex IG8 9QX Send response to journal: Re: Re: Medical Correctness	The post by Dr Barrington Johnson , unfortunately, is rather emblematic of the some of the more offensive attitudes present in some doctors, which was actually highlighted in the Raine et al article. Relying on opinionated, unsubstantiated generalisations such as “Anyone who has dealt with (ME/CFS) knows..” and “a high proportion of them have had deeply dysfunctional lives”, does not a reasonable and well- informed clinical judgement make. His faith in the North American DSM eventually validating his opinion (above all others, by the looks of it) of ME/CFS sufferers as ‘deviant’ characters, rather than the seriously, bio-medically ill people that they really are, is naïve at best: The DSM has been frequently and roundly criticised for problems with reliability and validity. What is more, the DSM has been subject to amendment in the light of such problems being identified. (1) These issues, and the fact that the WHO ICD-10 retains ME/CFS as the neurological illness that it is, plus the twenty or so years of biological research that demonstrates it to be an organic illness, might just deprive Dr Johnson of the comfort of his beliefs, and the myths he appears to perpetuate himself. I did also find it rather ludicrous that Dr Johnson seeks to include chronic pain in the DSM. If one follows his logic cancer patients will be categorised as mentally ill for being in chronic pain. If Dr Johnson is typical of psychiatrists “treating” ME/CFS, than the concerns of sufferers and their advocates about attitudes among doctors are completely valid. Doctors and other health professionals will have to face these problems in medical practice. To ignore this particular problem, the continued mistreatment of ME/CFS sufferers by too many doctors and associated health professionals, will result in an inevitable loss of confidence and standing in the medical profession, as such incidences become more and more public. More sufferers may even take advantage of legal proceedings or GMC investigation to ensure that those who misbehave are held accountable. I do hope that those doctors more enlightened about the inappropriate treatment of ME/CFS sufferers and the appalling physical suffering they experience will stand up and be counted over this issue. The wrongful attitudes towards ME/CFS by those who follow the flawed logic uncovered in the Raine article and elsewhere tarnish the whole of medicine. ME/CFS sufferers badly need to feel that there ARE doctors who they can trust. At present, despite the claims of some of the other contributors in this Rapid Response section, the evidence is to the contrary. (2,3,4,5). REFERENCES 1. Kutchins, H. Kirk, S.A. Making Us Crazy: DSM the Psychiatric Bible and the Creation of Mental Disorders (1999) Constable, London. 2. TYMES Trust publication, “The Forgotten Children: A Dossier of Shame” available online at: http://www.tymestrust.org/pdfs/theforgottenchildren.pdf 3. Department of Health, A Report to the Chief Medical Officer from the Independent Working Group on CFS/ME. 2002. 4.25% ME Group's 'Severely Affected ME (Myalgic Encephalomyelitis) Analysis Report on Questionnaire issued January 2004', March 2004. 5. Saffin, K. Hackett, A. Wright, A Report of a consultation For the MRC Research Advisory Group on CFS/ME, March 2003, Public Health Resource Unit, Institute of Health Sciences, Oxford. Competing interests: Carer, Social Science Lecturer and Researcher, Co-director, the ONECLICK Group
Re: Medical Correctness 5 June 2004
Hayley Klinger, ME sufferer bed nw2 Send response to journal: Re: Re: Medical Correctness	ME patients just can' t win can they? Are they, as is often claimed by psychiatrists, type A personalities, driven and over-achieving? Or are they as is often claimed -er - by psychiatrists, work-shy malingerers who can avoid the stress of real life by spending it in bed? Maybe the answer is that psychiatry has tried very hard to fit personalities to illnesses over the years (witness the melancholic TB sufferer and hysterical MS patient) and sadly it just does not work. What it does achieve however is the delightful prize of psychiatry taking it's place alongside homeopathy and healing as a non- scientific silly little profession that no serious medical student would want to join. Hayley Klinger Competing interests: None declared
Re: Medical Correctness 5 June 2004
B.N. Basinger, none unemployed, 91701 Send response to journal: Re: Re: Medical Correctness	Apparently Dr. Johnson doesn't want to keep up with mecical research. His following statement is simply ludicrous: "I believe that in a future DSM chronic fatigue, anorexia, bullimia, and chronic pain will all be included under 'Personality Disorders' section." Competing interests: None declared
Re: Re: Medical Correctness 5 June 2004
Ian T McLachlan, unable to work due to M.E. b45 9un Send response to journal: Re: Re: Re: Medical Correctness	Maybe the reason that people with Myalgic Encephalomyelitis are associated with negative stereotypes is because psychiatrists say they can help and when they do try to help, they don’t. If the medical model does assume that the patient wants to get better, and that the doctor has the means to do this. Then does it not also assume that illnesses should be properly researched to enable a better understanding of the condition, before trying to decide on how best to treat it? Unfortunately with M.E. that is not the case. Anyone who has had M.E. for any length of time knows that a high proportion of psychiatrists have deeply dysfunctional views when dealing with the illness. The secondary gain associated with psychologizing of the condition is immense, and leads to frustration on the part of the patient and their families. Saying that the problem is somehow the patients fault is absolving the Psychiatrists of their part in this game of perpetuating the myth of the illness being all in the mind! I believe that in the future Myalgic Encephalomyelitis will be excluded from under ‘personality Disorders’ section and recognised for the serious neurological illness that sufferers and their carer’s know it to be! At the moment we are living in an atmosphere of reducible and disbelief. To suggest that we do not want to get better is ridiculous when we are demanding our illness receive government funding so it can be researched properly. Competing interests: None declared
Psychiatric/physical debate unhelpful 5 June 2004
Will Johnston, former CFS/ME patient SE3 7QG Send response to journal: Re: Psychiatric/physical debate unhelpful	As someone who has recovered from this illness, I can say that my lifestyle was the major factor in initiating my illness. Yes, I did have a real (not imaginary) illness with real, physical symptoms. And yes, a viral infection did precede the CFS symptoms. However if my lifestyle had been different previously, I have no doubt that I would not have succumbed to this illness. From reading the accounts of other people who have recovered, it seems that some change in lifestyle is invariably involved in the recovery process - whether it is a change of job, an alternative therapy, a "quack" medical treatment that relies on the placebo effect, or whatever. As a previous corresponent has noted, CFS/ME sufferers tend to be high achievers, which makes it difficult for many people to accept that the illness could be psychosomatic. From my own experience and what I have read of other patients' experiences, people who have this illness are not workshy, lazy or nutcases - rather they have suffered a kind of "burnout" due to trying to trying to live a life that is either too stressful or that doesn't fit in with their subconscious long-term goals. For most people this is not a problem, but those, like me, who are susceptible to CFS/ME, eventually burn out when leading such a lifestyle. The constant arguments over the physical or psychiatric nature of the illness only serve to pit patients against doctors, and are likely to prevent patients even considering that a change in lifestyle may help them. Will Competing interests: None declared
Re: Re: Medical Correctness 5 June 2004
Ann E Appleton, Fibromyalgia sufferer CW11 4PF, Cheshire Send response to journal: Re: Re: Re: Medical Correctness	What an appalling response from Barrington Johnson. Hopefully, on reflection he will realize what a damaging statement he has made, - obviously borne out of complete ignorance. It fills me with horror to think that anyone with this life changing condition could possibly find themselves in the chair opposite to him! It is attitudes like his which can cause feelings of depression and despair in those who have tried determinedly to get better. Who, despite previously leading a vigorous and fulfilled life with a positive mental approach to everything, just cannot overcome this illness with the usual 'mind over matter' attitude. I think he should be ashamed of himself. Competing interests: None declared
Re: Medical Correctness 5 June 2004
Suzy Chapman, Parent of young adult with ME/PVFS Poole, Dorset, BH16 Send response to journal: Re: Re: Medical Correctness	Peter Culdrose [eBMJ RR: Re: Medical Correctness, 4 June] reminds psychiatrist Barrington Johnson of the erroneous aetiologies originally ascribed by the medical profession to MS and polio. To these, Mr Culdrose might also have added the so called 'refrigerator mothers' of children with autism spectrum disorders. Many readers will also be aware that the shaking hands observed in Parkinson's Disease were at one time attributed by the medical profession to the repressed desire to perform a certain activity. I feel sure that Barrington Johnson will be familiar with this, too. Competing interests: None declared
RE: Medical Correctness 5 June 2004
Tom P Kindlon, Unavailable for work due to ill health Dublin, Rep. of Ireland Send response to journal: Re: RE: Medical Correctness	I just thought I would bring to people's attention that the E-mail address of the author of the rapid response "Medical Correctness" (1) who described themselves as "Barrington Johnson psychiatrist" in this correspondence last week was used for a rapid response to the BMJ which was said to be from "Fred Johnson physician" (2). If this is the same person (and one presumes it is), maybe there should be rules that one can't make such wholesale changes about how one describes oneself like this? And if this is the same person describing themselves in very different ways for different situations, people can come to their own conclusions about this sort of behaviour. Tom 1)http://bmj.bmjjournals.com/cgi/eletters/328/7452/1354#61609 2)http://bmj.bmjjournals.com/cgi/eletters/328/7451/1271#60751 Competing interests: None declared
Re: Medical Correctness 5 June 2004
Diane Newman, SW School Candiate pe 2 8bg Send response to journal: Re: Re: Medical Correctness	Call this "Medical Correctness" ? Under who's definition - I say? And talkng about "WHO's definition". It would seem this so-called news the "carrier" of this apparent "Medical (in)Correctness" is nothing more than a nonsense. At best, sheer "Medical Madness!" 1) Is the "carrier" of this "Medical (in)Correctness/ Madness" unaware of the World Health Organisation's (WHO) classification and clarification of both Myalgic Encephalomyelitis and Chronic Fatigue Sydrome (M.E./CFS) under the coding of ICD - 10 G93.3 for Neurological conditions? 2) Is the "carrier" of this "Medical (in)Correctness/ Madness" still unaware of the most basis difference between "Chronic Fatigue Syndrome" (CFS) and "Chronic Fatigue"? - Sheer mindful ignorance, arrogance and abuse - at least, is the case of "carriers" of "Medical (in)Correctness/Madness", it would seem. 3) Just for the benefit of those "carriers" of "Medical in)Correctness/Madness" - "Chronic Fatigue Syndrome" is classified under the WHO Neurology code G93.3, and "Chronic Fatigue" under Mental Health code F48. 4) Presumably, there are no such things as newspapers, emails, texting and websites, or medical science - in the realms where such "carriers" of "Medical in)Correctness/Madness" reside, who then commute - to and fro, our beautiful universe - earth. 5) Certainly, there appears no respect, regard or concern for those whom the "carriers" of "Medical (in)Correctness/Madness" so readily and easily mock, vilify, condemned and betray? How sad and lonely it must be to live in those darkest and coldest of realms - where the "carriers" of "Medical (in)Correctness/Madness" do reside. Competing interests: None declared
Re: Medical Correctness 5 June 2004
Jessica N Wilkinson, Patient London SE23 3HZ Send response to journal: Re: Re: Medical Correctness	my response to Barrington Johnson: I was astounded to see your rapid response to the BMJ article on ME/CFS. To say that ME sufferers simply do not want to get well is absurd and at best deeply insulting. I take it that you have never been ill yourself? Never had the flu? Never suddenly been so unwell that you have had to take yourself to bed? I wonder how you explain the common sympoms of enlarged glands and sore throat? Is that a figment of our imagination? Physical illness cannot be explained by mental disorders. Yesterday I took a commendation from the Department of Health- the Outstanding Achiever of the Year award for an Allied Health Professional. I work a 4-day week, and run my own professional group with website and newsletter on my 'day off'. I have often wished that i had enough energy to enable me to do on-call and work full time in a job I really enjoy. I am frustrated. Why? because I so often experience cripling fatigue and flu -like symptoms, which prevents me being the person i want to be. For you to say that I do not want to get better is, in fact, heresy. I hope that one day you will come to see how warped your vision of this illness is. You attitude is not helping your patients, or the medical professiona as a whole. I would not wish my 'mystery' illness on anyone, but I sometimes do think that if the narrow-minded doctors that treat so many of us were to become ill with ME/CFS themselves, what a great thing that would be for the ME community today. It would be the most effective way of changing the errant and abhorrent attitude of doctors like yourself towards this illness. Competing interests: None declared
Why does IBS "cause GPs less difficulty"? 5 June 2004
Andrew Stainer-Smith, GP aboriginal medicine Australia Remote NT Katherine 0850 Australia Send response to journal: Re: Why does IBS "cause GPs less difficulty"?	Having been a GP for 22 years, we all know why IBS causes less difficulty than Chronic Fatigue. Diagnose IBS and there is usually a feeling of relief that the Doctor can share with the Patient. A relief that we can stop worrying about cancer and feel genuine reassurance. Congruence is usually good. Diagnose chronic fatigue and both know that this may be the start of a difficult uphill management struggle. Congruence is likely to be strained. IBS and CF are very different problems. In each the Doctor/Patient relationship is likely to experience vastly different dynamics. I am sad that this research made a poor starting assumption that the conditions are similar. Is not IBS a sensitivity phenomenon that nearly everyone is likely to experience in their lives? Who has never felt abdominal pain and experienced a change in bowel habit? Come on. Get real! If researchers wish to understand problems that impact on General Practice is would be wise to speak first to Doctors who take particular interest in studying the Doctor/Patient relationship. Understanding this relationship is the core skill of General Practice. Competing interests: None declared
Re: Psychiatric/physical debate unhelpful 6 June 2004
Victoria M Loughlin, ME patient and mother of child also with ME Lancashire UK PR1 0SY Send response to journal: Re: Re: Psychiatric/physical debate unhelpful	I find this response almost as devastating as that of Barrington Johnson. It is impossible to say whether a different lifestyle would have prevented the onset of this illness for most people who are quietly living very "normal" and productive lives until they have that possibility snatched away. These patients then have no chice but to radically change their lifestyle to cope with the pain, fatigue and myriad other unpleasant symptoms that continuously beset them. The psychiatric v. physical debate is not just unhelpful, it is a complete red herring. But unless the government and the medical establishment are prepared to spend scarse funding on research into the real causes of this illness, and ways to treat it adequately, we will continue to be subjected to this sort of neglect and wrong thinking, which amounts to little more than abuse. Competing interests: None declared
Some Doctors Fail ME/CFS Patients 6 June 2004
Jane Bryant, Director, The One Click Group. (Pressure Group for ME/CFS ICD-10 G93.3) London, W3 Send response to journal: Re: Some Doctors Fail ME/CFS Patients	Dear Sir This latest research published in the British Medical Journal clearly shows yet again how badly ME/CFS (ICD-10 G93.3) patients are so often being failed by their doctors. In relation to this latest study, it shows amongst other issues: 1. The necessity to play sick roles in a medical encounter. 2. The confusion over the classification of ME/CFS. 3. That pressure groups influence clinical encounters. As the Mother of an ME/CFS child (age 13) who has suffered from this disease since the age of ten, I was unaware that the playing of a ‘sick role’ by my very young son was vital in order to receive appropriate medical care since he was diagnosed as suffering from an organic brain disease, termed and classified as such by the World Health Organisation and the UK government under ICD-10 G93.3. The classification of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ICD-10 G93.3) is no longer in dispute as stated by Health Minister, Lord Warner and as all medical professionals and patient focussed support organisations should take note. See Hansard: http://www.publications.parliament.uk/pa/ld199697/ldhansrd/pdvn/lds04/text/40311w05.htm The role of pressure groups has always been to assist, support and advocate for patients and to provide them with information in relation to their disease that is readily available in the public domain. The government is now actively supporting the ‘Expert Patient’ initiative that assists to validate the work of such groups. Whereas previously healthcare professionals were not often questioned, today the consumer/expert patient has more power over all aspects medical and is better informed than ever before. With the advent of tools such as the worldwide web, this power will continue to grow, whether the medical profession feels comfortable with it or not. The assertion of Barrington Johnson (psychiatrist) in his contribution entitled 'Medical Correctness' that so many ME/CFS (ICD-10 G93.3) sufferers have found offensive, bears stark witness to the fact that the work of pressure groups should continue and flourish with the sanction of the government under the 'Expert Patient' initiative whilst such misinformation continues to be promulgated. Yours faithfully Jane Bryant Competing interests: None declared
Re: Medical Correctness 6 June 2004
L. S. Lodico, MD, none New York, 11378 Send response to journal: Re: Re: Medical Correctness	Hi Dr. Johnson (and all other MDs) I am Dr. Lodico. I understand you better than you may know. No one could be more shocked than I when I came down with a disabling, life destroying illness that I didn't believe existed. I have since met many people who have lost successful lives and good incomes to this disorder. I suffer from the "figment of your [or is it my : ) ] imagination" known here in America as Chronic Fatigue Syndrome and in your neck of the woods as ME. I know that science and physicians often need time to catch up with diseases. Look at Multiple Sclerosis, a little over 50 years ago it was consider a neurotic condition. I am not shocked that history insists on repeating itself, though a bit saddened. I don't think it's any coincidence that both illnesses primarily affect women. Society (and physicians it seems) remain consistent in their prejudices. We are psychiatrists so unlike our medical brethren, the internists and surgeons, we are used to making diagnoses without definitive diagnostic tests. We also know how damaging inaccurate biases are to patient populations suffering from poorly understood and stigmatized diseases. Because of these advantages I believe (perhaps unfairly) that the psychiatric community should be held to a higher standard concerning accurate diagnosis and appropriate referral of patients with Chronic Fatigue Syndrome. You say you are a psychiatrist so I am sure you are familiar with these “misconceptions”: panic disorder due to “rage projected onto the environment” and “pathologic mothers” “inducing” Schizophrenia. I don’t expect you to believe me but the science exists for Chronic Fatigue Syndrome just as it exists for Major Depression or Schizophrenia. Perhaps you may believe Universities like Harvard and the US Surgeon General (links: http://cfids.home.att.net/physicians2.html ). I had robust good health, a full and gratifying personal life and a professional life that was fulfilling and finally financially rewarding (I had very high school loans to pay off). If wishing would make it so...I'd be taking care of patients... instead of being one. Sincerely, LS Lodico, MD Competing interests: None declared
Re: Medical Correctness 7 June 2004
N Portman, Patient Tunbridge Wells, Kent Send response to journal: Re: Re: Medical Correctness	Although I am perhaps repeating what others have already said, I feel compelled to add my voice to those who have already criticised Barrington (Fred?) Johnson's rapid response. I have had ME for almost 20 years and the illness has totally destroyed my life. I have seen numerous doctors, and tried many treatments over the years (including exercise) none of which have helped. In short, I am absolutely desperate and would try almost anything to get better. I find it absolutely astonishing, and an utter disgrace, that someone who has never met me or thousands of other ME sufferers around the world, is happy on the basis of no evidence whatsoever, to lump us all together, and label us as workshy malingerers. What breathtaking arrogance. And what is this mysterious "secondary gain" that Dr Johnson talks about? Has he I wonder ever faced the stress of dealing with hard nosed insurance companies, or our kafkaesque benefits system? The reality is that many ME sufferers who are unable to work are living in abject poverty, often shunned by disbelieving family and former friends. I can only hope that Dr Johnson works privately, and is not an NHS employee. I would hate to think that taxpayers' money was being wasted lining the pockets of an individual who clearly has so much contempt for the very people he is paid to care for. Sadly, I strongly suspect that the only thing that separates Dr Johnson from many of the self-styled ME experts in this country (almost all of whom are psychiatrists) is that he is prepared to express his views honestly. Psychiatrists specialising in ME research are notorious for hiding their true opinions behind a veil of obfuscation and psychobabble. The involvement of psychiatrists in ME research and treatment over the past 15 years has been an utter disaster. They wilfully refuse to acknowledge the large body of evidence suggesting that ME is primarily a physical illness, and the only "treatments" they have come up with are Graduated Exercise (GET) and Cognitive Behaviour Therapy (CBT). There is a vast amount of anecdotal evidence gathered by the main ME charities that suggests GET can actually make many patients worse, especially if they receive the treatment in the early stages of their illness. And as for CBT, am I alone in regarding this attempt by psychiatrists to medicalise patients' opinions (or "beliefs") as slightly sinister, even stalinist? Competing interests: None declared
Box message needs correction ? 7 June 2004
Dr. Naseem A. Qureshi, MD, IMAPA, LMIPS, Medical Director [A], Director, CME&R Postcode 2292, Buraidah Mental Health Hospital, Saudi Arabia Send response to journal: Re: Box message needs correction ?	Sir: I would like to draw your attention to the box at the end of this article (1). The following sentence under the heading of what is already known" General practitioners are more uncertain or dismissive than they are of irritable bowel chronic fatigue syndrome syndrome " needs correction just for the purpose of laypersons' perspective, who might get confused. It should read as "General practitioners are more uncertain or dismissive of chronic fatigue syndrome than they are of irritable bowel syndrome ". Reference: Rosalind Raine, Simon Carter, Tom Sensky, and Nick Black General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ 2004; 328: 1354-1357 Competing interests: None declared
Grey areas at the interface of psychiatry and medicine? 7 June 2004
Dr. Naseem A. Qureshi, MD, IMAPA, LMIPS, Medical Director [A], Director, CME&R Postcode 2292, Buraidah Mental Health Hospital, Saudi Arabia Send response to journal: Re: Grey areas at the interface of psychiatry and medicine?	Sir: This study by Raine and colleagues (2004) makes a very interesting reading and in particular its methodology is very impressive. Notably, this study explores comparatively the perceptions of general practitioners about chronic fatigue syndrome and irritable bowel syndrome, the two poorly understood syndromes. The other key grey areas at the interface of psychiatry and medicine are fibromyalgia, functional gestrointestinal disorders, noncardiac chest pain, chronic headache, dizziness, medically unexplained syncope, and chronic unexplained pelvic pain. Collectively, all of these disorders appear to be characterized by increased current and lifetime prevalence of psychiatric disorders, increased nonspecific emotional distress and increased psychosocial stressors. These undistinguished conditions have multifactorial models for their etiology, which include psychiatric disorders (somatic presentation of psychiatric disorders) , psychosocial stressors, psychosocial trauma, and concepts underlying somatosensory amplification and misattribution of symptoms. This study has multiple implications, 1) GPs generally appear to have variable lack of confidence in dealing with patients having one of the aforesaid conditions and hence may require continuing condensed training courses on somatoform disorders, 2) GPs should develop a very healthy therapeutic alliance with these patients who need extensive evaluation coupled with proper investigations, 3) although GPs don't have indepth knowledge in psychiatric interventions to be used in such clienteles, they should not hesitate in seeking help from competent mental health professionals, 4) there should be specifically tailored courses for changing GPs' revealed negative stereotypes against patients with IBS/CFS, 5) health authorities should establish "somatoform disorders clinics" [if these are not there], which should be supervised by consultation-liaison psychiatrists, though GPs may be delegated the leading role in running these clinics. Allied mental health professionals can also contribute substantially to the therapeutic benefits of these difficult cases. Finally, we all should listen patiently to these patients, develop with them good rapport, offer them what therapies we have, and explain to them as explicitly as possible and in simple terms the nature of the disease. We should not reject these patients because they have some ingrained ill-defined "somatic" traits that produce treatment resistance in their course of illness. Reference: Rosalind Raine, Simon Carter, Tom Sensky, and Nick Black General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ 2004; 328: 1354-1357 Competing interests: As the main objective of our project entitled "Integration of mental health into primary care", our team of experts train GPs in clinical psychiatry in Saudi Arabia.
Re: Re: Medical Correctness 7 June 2004
Jean E Long, ME survivor unable to work PO4 9AA Send response to journal: Re: Re: Re: Medical Correctness	I thank Dr. Lodico for his contribution to this debate, that he speaks as a psychiatrist, and a patient with ME/CFS, lends further strength to the points he has made. I would also like to thank my American friend Ms Miller for her contribution, we have crossed paths often in our search for answers. The issue over how GPs perceive and treat their patients is a serious one; they have an all-important role to play in the patient’s physical and psychological well-being. A GP who takes ME seriously stands to gain as much as the patient, together they can learn much, but mutual respect and trust are paramount if this is to succeed. As Bernie Siegel so correctly says “survivors seek wisdom, they read books, they go on the internet. They’ll seek information and look into various treatments”. I am a survivor but my search for answers and solutions has not always been appreciated, wrongly GPs have felt that accepting my fate would make theirs and my life easier. Clearly they have no understanding of devastation this illness has in terms of symptoms and our lives. I would not wish it on my worst enemy. I am now one of the lucky ones; in more recent years I have been seeing a GP who has some understanding of how this illness impacts upon my life. With trial and error we have found some solutions, she allows me whatever time I need in times of distress and when I am searching for a better understanding of what is going wrong. She does not feel threatened by my research and encourages me to keep looking for answers. She is happy to give her opinion when I discuss my discoveries; I listen and respect what she has to say. This is how should be for all ME patients, sadly for most with this dreadful and disabling illness it is not the case. Competing interests: None declared
Re: Psychiatric/physical debate unhelpful 7 June 2004
Douglas T Fraser, Violinist London W6 Send response to journal: Re: Re: Psychiatric/physical debate unhelpful	The contribution by "Will Johnston" serves as a useful reminder when reading material relating to ME/CFS, to first check and carefully consider the interests of the authors and their sponsors in order to gain more insight into the validity of the particular view being promulgated. ( "Will Johnston" appears to be a David Jameson with a website at http://www.mind-body-health.net/ ) Drs. Brian Martin and Gabriele Bammer provide an analysis of such "controversy" in medical science and knowledge in their essay - "When experts disagree" - at: http://www.uow.edu.au/arts/sts/bmartin/pubs/96Ranney.html Douglas T Fraser Competing interests: None declared
GP's can be better informed 7 June 2004
Duncan Cox, ME Sufferer Rugby, Warwickshire Send response to journal: Re: GP's can be better informed	Sadly it will have come as little surprise to many sufferers of ME/CFS that unless GP’s have had first hand experience of ME/CFS patients often experience a poor level of understanding of this illness in the doctors’ surgery. It must though be open to question whether GP’s themselves are entirely to blame for this situation. Information being disseminated appears to be poor, GP’s seem to be fed on a “diet” of papers and articles with a psychiatric "accent" by the mainstream medical journals and the diagnostic criteria now appears to be so nebulous that they may find it difficult to differentiate ME from other fatigue states. Fortunately as an ME sufferer my own experience has been somewhat more positive as my GP is keen to be updated on the latest biomedical research findings from organisations such as MERGE and others committed to unravelling the physical causes of ME/CFS (as detailed by Douglas Fraser). The “Canadian Criteria” (1) for ME/CFS also seems to have been well received at our local surgery - it would seem that to date nothing as comprehensive has been produced here in the UK. Having eventually lost my career due to ME/CFS last year and the means to support my family I find that references to "low symptom thresholds", "poor work ethic" and "secondary gain" not only alarming but quite frankly, pathetic. Everybody that I know who suffers from this wretched illness is desperate to resume a normal life again and regain some degree of autonomy and financial independence. Unfortunately Dr Barrington Johnson's comments are also particularly unhelpful and I am left wondering quite what illness he is referring to when talking collectively (and I feel a little contemptuously) of "these patients". Given that Kennedy et al (2) recently demonstrated the inclusive nature of the 1994 Fukuda criteria it is extremely disappointing that we still have health service professionals advocating a “one size fits all” approach. He also talks about ME/CFS as "this game" and regrettably that is precisely what it has become, as those who should know better continue to play games with other peoples lives. Finally I am far from clear why Rosalind Raine and her colleagues were comparing GP's attitudes between ME/CFS and IBS at all. Surely it would have been more logical to compare GP’s attitudes to the management of ME/CFS with other neurological illnesses such as MS ? Duncan Cox 1. ME/CFS: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome, 2003, 11, 7 - 116. 2. Kennedy et al. Specficity of CDC criteria for CFS. Annals of Epedimiology. Feb 2004. Competing interests: None declared
Re: Medical Correctness 7 June 2004
Geoff Sullivan, Not working due to illness Brighton BN14GR Send response to journal: Re: Re: Medical Correctness	Well thank you very much Barrington Johnson for providing us all with a prime example of what the authors of the said report discovered and reprted on! You obviously have NO knowledge whatsoever about ME or else you would not have spouted such ill informed twaddle. Frankly you give your profession a terrible name and reputation. Is it any wonder that you and your like get attacked by patients? I think not. What you have written is disgraceful and totally unfair and without a shred of evidence. I would suggest that it is people like you who stand to gain most from pushing the psyche agenda for ME. I can tell you that I have gained exactly NOTHING from having ME for over 22 years. I have lost hundreds of thousands of pounds in potential earnings and all the items etc that such money brings, such as a house, nice cars, holidays, etc etc. I have missed out on relationships, marriage, the opportunity to have children and so and so on. What you espouse is totally ludicrous and I would suggest that it is people like you that are deluded and in need of psychological help. You seem to be very sure that you are right? So please in future could we have a little more sympathy and less vindictiveness towards patients with ME. Maybe your experiences with ME patients are the result of your own attitudes and handling of them. I know I've met many doctors like you and when you are a victim of injustice, rudeness, and sheer downright unfairness, you do tend to want to fight back. Please think about it "Barrington", or whatever your name is? Yours fed up with arrogant, rude, disbelieving, prejudiced and closed minded doctors, Geoff Sullivan Competing interests: Person with long-term ME
Different disorders? 7 June 2004
Joan T McClusky, Medical writer New York, NY Send response to journal: Re: Different disorders?	Perhaps we are looking at 2 different disorders: chronic fatigue syndrome with a primarily physiologic basis, and another form of the syndrome that is primarily psychogenic in origin. Competing interests: None declared
Please believe psychiatrists with CFS 7 June 2004
Ellen Goudsmit, Retired Teddington TW11 9QX Send response to journal: Re: Please believe psychiatrists with CFS	Dr. Lodico (Re Medical Correctness eBMJ 6th June) showed great courage when he admitted to suffering from CFS. Most of the psychiatrists with ME whom I know daren't 'come out' for fear of the inevitable abuse and ridicule. After all, if you keep hearing colleagues say how these patients use symptoms to gain attention, how they need this illness to 'escape the rat race', how they somatise or are merely exaggerating otherwise normal somatic phenomena, who wants to admit to having the disease themselves? Most of us do not need the extra hassle, so we stay quiet. Or we blame our fatigue etc on another, more acceptable disorder, like migraines or back ache. Dr. Lodico's response reminded me of an article by an American surgeon with the illness (1). He referred to the trivialisation of the illness (from exhaustion to fatigue), and the lack of understanding. However, colleagues still prefer to believe doctors who do not have the illness and have been surprisingly dismissive of doctors who do. Instead of recognising the specialist knowledge and insights of these honest and intelligent individuals, many regard them with suspicion, as they not only contradict the popular and rather convenient stereotype, but the latter provides us with a cheap and cheerful solution at a time when money is so tight. If we blame CFS on a fear of activity, we don't have to fund research into new anti-virals. But it's not scientific, as it means accepting assumptions (e.g. that CFS is the result of deconditioning and misguided beliefs) and ignoring the evidence of organic pathology (which can be accessed via Medline or the factsheets on http://freespace.virgin.net/david.axford/me/me.htm As a shrink, I've seen colleagues reverting to the common layman's approach to the unknown, i.e. blaming the victim in line with the just world theory. Hence you get generalisations such as 'they all led dysfunctional lives' or 'it's a result of their lifestyle'. These are often based on a paucity of knowledge combined with prejudices (e.g. about women), and sometimes, on misdiagnoses (e.g. CFS instead of burn-out (Z73.0). Such strategies help us cope with uncertainty and fear, at least in the short-term, but do not help the patients (2). In reality, we're merely deceiving ourselves. We may feel we're not at risk, given we do not lead dysfunctional lives and we're not into avoidance behaviour, but it's an illusion. As the literature shows, a considerable number of cases of CFS appear to have ongoing infections perpetuated, possibly, by an inadequate immune response. But there's more to this than a primitve way of dealing with uncertainty. There's also denial. If one studies the most often cited explanation for CFS, i.e. the CBT model, one can see that there is virtualy no decent evidence to support any part of it. All the hypotheses have been disproven (see the articles on CBT, on the website above). Yet those old assumptions keep on being regurgitated, as though the evidence to the contrary did not exist. Take the continued speculation about the role of deconditioning on fatigue. In a nutshell, research has been done but none has found a significant correlation between lack of fitness and the symptoms of CFS. Lack of fitness may explain tiredness and dizziness on first standing, but sore throats? Tender glands? Vertigo? Intolerance to alcohol? Seizures? There's more to CFS than fatigue and theories which cannot explain intolerance to alcohol (trivial but extremely common) are at best incomplete. The same goes for faulty beliefs. Here we have a theoretical construct, where much of what is considered 'faulty' is based on the assumption that all the existing evidence of ongoing disease is wrong. The medical director of the ME Association, who must be one of the most patient men in the UK, has spent years listing the relevant studies which challenge the CBT model, yet many refuse to take them on board. Are all those scientists who reported evidence of disease incompetent? Has anyone checked? CBT works (in some cases) because it increases self-efficacy, but so does counselling. Graded activity works, probably because patients learn to pace themselves better (when activity levels were measured objectively, there were no notable increases after treatment, Goudsmit in press). We have no data yet on the effect of psychiatric interventions where the patients suffered from symptoms other than tiredess and emotional distress. (An interesting question is it not: can CBT help those with vertigo, blurred vision, seizure-like activity and intolerance to alcohol?) During his spell at the BMJ, Dr. Smith refused to keep readers informed of any physiological, neurological and immunological findings in relation to CFS. (With one notable exception, in 1995). This means that many GPs have only read one side of the story, i.e. the CBT school's views, leaving them frustrated and confused, as documented by Raine et al). I am a mental health professional who came out about my ME years ago. I've been told by colleagues who knew the truth that despite my extensive training as a shrink, I have no insight into my own psychological problems (which they never shared with me, so I still don't know what they are), that what I really need is a boyfriend (yes, please, can you clone Brad Pitt for me?) and that I'd be better if I hadn't become an advisor to the ME Association (since they peddle ideas which apparently keep us all ill), etc etc. I've actually had ME since I was a child, when my life consisted of going to school, eating lovely food at home, playing with friends and listening to the Beatles. I never mentioned to anyone that I was ill, as I didn't know I was ill. All I knew was that I often felt ill and that after a few days rest, I generally felt better again. During those days at home, I couldn't do anything and I missed my friends. There was no reward, no special food, no secondary gain. Later, I used a strategy called normalisation to hide my illness. Still one psychiatrist would claim that I used my symptoms to gain attention. He was guessing and he was wrong but these things stayed in my notes for years, causing doubts in many of those who read them. It took a letter from a wonderful Professor at Barts to undo the damage caused by this inaccurate psychobabble. Others are not so lucky. Psychologisation, based invariably on assumptions and prejudice, is not benign (2). People internalise these messages, especially if like me, you've had them thrown at you for thirty years. They undermine your self- confidence and can make you very afraid of doctors. Others become angry and may direct that towards every professional, even if they do not really know what they think. Hence the distrust of all psychiatrists and most psychologists. (I may have helped devise the research criteria for ME and introduced a useful strategy for conserving energy i.e. pacing, but I'm a shrink and to some patients, that makes me one of 'them'. So many patients don't respect me, and neither do most colleagues.) On the other hand, how much misrepresentation and psychobabble are people expected to take before they snap? The constant drip, drip, drip of trivialisation and lies, reinforced by third rate research, is more than any normal person can reasonably be expected to bear. And many don't. The editorial bias which ignores everything non-psychiatric has disempowered doctors and left them with information they often know does not fit their experience. How many have seen patients who were perfectly well and emotionally stable before they succumbed to a bug from which they never recovered? Who do not fit the stereotype of the person who misinterprets normal symptoms and becomes afraid of activities etc. I respect Dr. Smith for all the good things he did as editor, but his approach to CFS caused a lot of harm. In the next few years, there will be more antiviral drugs, some of which have been shown in preliminary trials to be helpful, and in some cases, curative in cases of CFS (3, 4). I trust that the new editor will be more objective and keep readers informed of these developments. In the meantime, please think before you dismiss someone as a somatiser etc. And why not take on board some of the insights offered by your colleagues who know the illness first hand? We may not be able to walk very well, but that doesn't mean we can't be objective or professional. 1. English, TL. Skeptical of skeptics. JAMA 1991, 265, 964 2. Goudsmit, EM. The psychologization of illness. In Food Allergy and Intolerance, 2nd Ed. J Brostoff, and SJ Challacombe (EDs.) London: Saunders: 2002. chapter 49. 3. Ablashi, DV, Peterson, D., Levine, S., Gupta, S and Whitman, J. Human Herpesvirus-6 variant A infection in CFS patients and the use of anti-herpes compounds, immunomodulator and a whey protein (InmmunePro Rx) to suppress infection and improve symptoms. Chronic Fatigue & Fibromyalgia Forum, 2003, December, 5-8. (Published by the AACFS) 4. Dalakas, MC. Enteroviruses in chronic fatigue syndrome: now you see them, now you don't. JNNP, 2003, 74, 1361-1362. Competing interests: I am a health psychologist with ME
Re: Grey areas at the interface of psychiatry and medicine? 7 June 2004
Angela P. Kennedy, Social Science Lecturer Essex IG8 Send response to journal: Re: Re: Grey areas at the interface of psychiatry and medicine?	Dr. Naseem A. Qureshi claims the following about a host of unrelated conditions (and by his implication, ME/CFS): “ Collectively, all of these disorders appear to be characterized by increased current and lifetime prevalence of psychiatric disorders, increased nonspecific emotional distress and increased psychosocial stressors. These undistinguished conditions have multifactorial models for their etiology, which include psychiatric disorders (somatic presentation of psychiatric disorders) , psychosocial stressors, psychosocial trauma, and concepts underlying somatosensory amplification and misattribution of symptoms.” Significantly, he shows no substantiating evidence at all to support this rather astounding, enormous, generalised, claim. His list of unrelated disorders are very similar to those in a recent article by Rief and Sharpe (1) who also place these unrelated conditions as ‘medically unexplained” and “functional disorders“, again, without substantiating evidence. The oft-repeated claim that ME/CFS is ‘medically unexplained’ is incorrect. There are a number of biomedical explanations available, although there does appear to be gaps in knowledge, for which further research is being undertaken, and needs to be so. In this respect ME/CFS is no different from asthma, cancer, schizophrenia, AIDS, Parkinson’s, Multiple Sclerosis, and many other organic diseases. As ‘somatization’ disorders appear to be diagnosed if signs or symptoms are subjectively categorised by the diagnoser as ‘unexplained’, (2) and there is always the risk of inadequate biomedical investigation leading to such a diagnosis (3), the readiness to incorrectly claim ME/CFS as such is particularly worrying. Remarkably, in his assignation of ME/CFS as, ultimately, a ‘somatoform’ disorder (mimicking organic illness), Dr Qureshi managed to ignore the WHO ICD-10 neurological classification of ME/CFS, the Canadian Case Definition and Treatment Protocols, and twenty years of biomedical research into the disease. This is in contrast to, for example, those approaching ME/CFS from a biomedical perspective, who frequently acknowledge psychiatric references, even when critically analysing those. This ignoring of the large, international body of biomedical research is a common feature among psychiatrists claiming ME/CFS as a somatization/somatoform disorder. The psycho-social approach to ME/CFS is heavily contested by patients, advocates, MEDICS and Biomedical Researchers ALIKE because it has a number of major theoretical and empirical flaws. And one does not have to be a rocket scientist to understand this. To expect patients or parents NOT to resist when flawed psychosocial constructs are applied to them or their children, especially when these make the sufferer’s health worse as a result, is arrogant and naïve. This is most likely a key component of the conflict between certain doctors and their ME/CFS patients. All the ‘sympathy’, soothing words and mental health interventions in the world will not overcome the flaws inherent in the various somatization theories, the crux of a serious, international problem. 1. Rief, W. Sharpe, M. "Somatoform disorders--new approaches to classification, conceptualization, and treatment" Journal of Psychosomatic Research, Volume 56, Issue 4, April 2004, Pages 387-390. 2. ‘Somatization Disorder’,American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders, fourth edition. Washington, DC: American Psychiatric Association. 3. McWhinney, I.R. Epstein, R.M. Freeman, T.R. Rethinking Somatization, January, 1997. http://www.uwo.ca/fammed/ian/somatizationmain.htm Competing interests: Carer, Social Science Lecturer and Researcher, Director of the ONE CLICK Group
Don't ignore the facts 7 June 2004
David W Jameson, former patient Belfast, BT4 Send response to journal: Re: Don't ignore the facts	Sir, A fact ignored by many patients and doctors is that a large number of patients recover from CFS/ME due to the placebo effect. Just looking at the results of any placebo-controlled trial of CFS/ME treatments or reading the reports of patients who have fully recovered after using homeopathy, kinesiology or any number of other placebo treatments shows that the placebo effect is remarkably effective at treating this illness. Another fact that appears to be difficult for many people to accept is that functional illnesses such as IBS and CFS/ME can have physical symptoms such as pain, orthostatic intolerance and dysfunctional immune system as a result of psychosocial factors. In fact all of the physical symptoms of CFS/ME can be very easily and elegantly explained in terms of a primary psychosocial cause (1), so it is wrong to say that these physical markers constitute proof that it is an organic illness. The problem is that there is no effective treatment option for patients with functional illnesses. They either figure out for themselves the lifestyle changes necessary to recover from the illness (if they are lucky), or they get sucked into one or other alternative therapies which may or may not work depending on their mindset. This situation will not improve until we get rid of the old notions of hysteria and neurosis causing psychosomatic illness and actually do some research into how the long-term placebo effect works to cure CFS/ME and related illnesses, and exactly what changes in lifestyle it is equivalent to. I look forward to the day when we can rid ourselves of all alternative therapies that rely purely on the placebo effect and instead have proper management programmes based on science rather than outdated notions. David Jameson REFERENCES (1) Jameson D, "Mind-Body Health and Stress Tolerance", free pdf book available online at: http://www.mind-body-health.net Competing interests: None declared
Medical correctness and evidence based medicine 7 June 2004
Peter D White, Reader in Psychological Medicine St Bartholomew's Hospital, London, EC1A 7BE, Simon Wessely, Michael Sharpe Send response to journal: Re: Medical correctness and evidence based medicine	EDITOR, We were concerned to read the correspondence that has followed the paper by Raine et al. On the one hand we are concerned that some correspondents see fit to denigrate treatment approaches that have been shown to help many patients with CFS/ME. Several randomised controlled trials, confirmed by four systematic reviews, have shown that the benefits of both cognitive behaviour therapy and graded exercise therapy considerably outweigh the risks in ambulant adult patients. Published audits from clinical practice support these findings. Further trials, already planned or near completion, will compare these and similar approaches with adaptive pacing and usual specialist care, as well as test whether these approaches can help both the severely ill and children and young people. On the other hand we are equally concerned by some other comments, which seem to denigrate sufferers. We do not agree with the comments from "Barrington Johnson", who calls himself a psychiatrist. Perhaps he is, but no such name appears on the GMC register nor the members' register of the Royal College of Psychiatrists. It is unfortunate that anyone would want to use a pseudonym, if this is one. Views that can only be expressed under assumed names are probably not worth expressing. The essential need for progress to defeat this illness is for dialogue and more science, not denigration of either patients or those trying to help them. Competing interests: We are all honorary consultant psychiatrists and clinical researchers.
Re: Barrington Johnson 8 June 2004
Vicky-Louise Ling, None Chelmsford Send response to journal: Re: Re: Barrington Johnson	Unfortunately the response of Barrington Johnson comes to me as no surprise. Whilst I feel that M.E. sufferers are gaining some degree of credibility, we are by no means free from those in the medical profession who continue to hold these absurd views. It’s a sad reflection that those who are so unwell are continually having to struggle and fight against the damage which views, such as those expressed by Barrington Johnson, have upon our acceptance and treatment by society and the medical profession. I, like many others, have suffered from this disease for over 13 years. I contracted the disease during my childhood and have had to make the progression into adulthood whilst being blighted by this illness. In some ways I really and truly wish that it was a psychological problem because then at least I might be able to get some treatment which would lead to me being able to indulge in a normal life. It’s strange that Mr Johnson believes that sufferers have no desire to help themselves to get better. I struggled my way through school (GCSE and A-Levels) on half time and did a degree at university all whilst suffering from this disease. Granted my life revolved around purely studying and I had little or no social life, but if I was as Mr Johnson portrays us then I doubt I would ever have bothered to continue with my education (at the expense of my health). I know of many other sufferers who, like myself, desperately try to hold down jobs, complete university and take school exams. I don't think these people can be accused of not trying. Any psychological problems which M.E. sufferers may suffer from are in addition to this illness. I would like to find any doctor who can show me people who suffer from a chronic disease, such as this, who have not experienced some form of depression and grief for what they have lost and frustration at their situation. Just knowing that when you visit your GP or a consultant there is a possibility that you might be meeting with someone who upholds views such as those held by Mr Johnson is, without doubt, a contributory factor to any negative feelings! I sincerely hope that neither Mr Johnson nor any of his nearest and dearest happen to be struck by this disease. I am sure I am not the only person who finds the need to remind those in the medical profession that they are not gods and that if they don’t know the answer to our health problems then that’s ok, but there’s no need for them to just blame any conditions that they do not understand on ‘personality disorders’ and give vague comments such as: ‘it’s all in the mind’. Competing interests: None declared
Re: Re: Grey areas at the interface of psychiatry and medicine? 8 June 2004
Dr.Naseem A. Qureshi MD, IMAPA, LMIPS, Medical Director(A), Director CME&R Buraidah Mental Health Hospital, Postcode:2292, Saudi Arabia Send response to journal: Re: Re: Re: Grey areas at the interface of psychiatry and medicine?	Sir: This comment is in response to Angela's remarks, which are highly informative and heart-touching and I am practically agree with her excellent observations supported by relevant studies and moreover I am also aware that there are many other pertinent references exploring complex relationships between psychiatry and medicine in particular research avenues which share the two disciplines etiologically, phenomenologically, diagnostically, therapeutically and prognostically. However, I would like to make few specific comments, 1) physicians including mental health professionals [MHPs] and allied MHPs including sociologists/social workers must evaluate the patients with physical/psychiatric symptoms holistically and biopsychosocial model is still the best paradigm, which ensures that all the three issues have been addressed comprehensively by the attending physician, 2) patients with medically unexplained symptoms must have a differential diagnosis of anxiety disorders, depression and somatoform disorders, 3) with regard to ME/CFS, patients with this disorder more often tend to have aforesaid comorbid psychiatric disorders, 4) if such patients are treated only by medical means without taking into consideration the psychosocial issues, physicians are doing disservice to a great majority of population. Once again, I respect the opinion of Angela and thank her for giving me this opportunity to expand on this complex topic involving ME/CFS and its close but fuzzy relationship with some psychiatric disorders. Competing interests: None declared
CFS/ME, “bodily location of illness” and mental health interventions 8 June 2004
A Chaudhuri, Senior Lecturer in Clinical Neurosciences University of Glasgow Send response to journal: Re: CFS/ME, “bodily location of illness” and mental health interventions	One of my patients alerted me to this paper by Raine and colleague (1) and the ensuing responses in the eBMJ. The study confirms the familiar views of many CFS/ME patients that the general practitioners’ perception about their illness is neither helpful nor supportive. The authors identify five reasons behind the unhelpful perception but in reality, there is only one fundamental reason: different opinion about the illness between the practitioners and their patients. I do not understand why “patients’ transgression of the sick role and lack of stoicism” become relevant issues only for CFS/ME and not in irritable bowel (or other chronic illnesses). We should make a conscious effort to understand why this divergence of opinion between CFS/ME patients and health care givers has still not been bridged despite joint efforts from the researchers, patient groups and the Department of Health in the recent years. The answer probably lies in the conclusion of another paper in the same issue of the BMJ. “Information delivery for patients needs to be individualised with particular attention to process at all stages of illness. Patients and families use secondary sources of information to complement and verify information given by health carers”(2). If correct information was used, most general practitioners would have less difficulty in accepting that (i) appropriately defined CFS/ME patients have a primary neurological problem and that the “precise bodily location” of CFS/ME is probably no more elusive than the bodily location of chronic pain or primary dystonia (ii) the proposed mental health intervention in CFS/ME (cognitive behaviour therapy) is only a rehabilitative strategy for coping and its use should not imply a psychological nature of the illness; (iii) a modest level of regular physical activity is helpful in CFS/ME as in other medical disorders but it is not a condition that can ever be cured by incremental exercises; (iv) a range of symptomatic medical treatment is available and may be used with due selectivity to improve the quality of life of a sufferer just as in patients with multiple sclerosis or rheumatoid arthritis; and (v) empathy is the cornerstone for managing chronic disabling illnesses and CFS/ME is no exception. It is both sad and indeed, a very dark aspect of medicine (3) if CFS/ME patients are continued to be perceived by their physicians as malingerers, somatisers, dysfunctional or hysterics because of poor research and rather limited effectiveness of the interventional strategies presently advocated in this condition. A good starting point- and I am less sure if the psychiatrists would agree- is not to label CFS/ME as a “medically unexplained illness”. References: 1. Raine R, Carter S, Sensky T, Black N. General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ 2004 328: 1354-1357 2. Kirk P, Kirk I, Kristjanson LJ. What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 2004 328: 1343-0. 3. Smith R. Medicine and man’s fall (Editor’s choice).BMJ 2004;328: 0-g Competing interests: None declared
Re: Medical correctness and evidence based medicine 8 June 2004
Jane Bryant and Angela Kennedy Bryant & Kennedy, Directors, The One Click Group. (Pressure Group for ME/CFS ICD-10 G93.3) London W3 Send response to journal: Re: Re: Medical correctness and evidence based medicine	Dear Sir We were rather concerned in turn to read the correspondence by White et al. Firstly, we would like to point out that valid criticism backed by references does not constitute denigration. We note that the authors do not give references for their systematic reviews that allegedly present the ‘benefits’ of CBT/GET as outweighing what are now known to be significant risks. The latest consensus document produced under the auspices of Health Canada (1) by an international panel of nearly a dozen expert physicians who have between them treated/diagnosed over 20,000 ME/CFS patients have made a number of serious critiques of CBT/GET and states that as few as 5% of the patients studied meet the criteria for somatisation disorder. They have also discussed a key issue of post-exertional malaise, that is, a worsening of the condition after physical and mental exertion. This has unfortunately sometimes been left unaddressed in the literature supporting CBT/GET. In a British study (2), 1,214 of 2,338 patients had tried graded exercise. 417 found it to be helpful, 197 reported no change and 610 (50%) indicated that it made their condition worse. This was the highest negative rating of any of the pharmacological, non-pharmacological and alternate approaches of management and may help explain the high drop out rates noted in some of these programmes. Some patients who enter these studies are so badly damaged by CBT/GET that the results of these treatments place them in wheelchairs for years. It is interesting to note that in the treatment review by Whiting et al (3), all the CBT and GET studies that indicated improvement used the less restrictive Oxford criteria with the exception of the Prins study (4) that used the CDC criteria for prolonged fatigue but eliminated the other CDC criteria. All studies excluded ME/CFS patients who were too ill to regularly attend treatment sessions. The complexity of CBT studies, the most varied inclusion and exclusion criteria, the very limited portions that can be properly blinded and the subjective means used for most evaluations places firmly into question the validity of the results. In March 2001, the charity Action for ME carried out a survey of 2,338 respondents entitled “Severely Neglected - M.E. in the UK” that clearly showed that “graded exercise was reported to be the treatment that had made most people worse.” Furthermore, most CBT/GET trials that claim success have been criticised for the heterogeneous population in their samples so that ME/CFS sufferers are mixed in with idiopathic sufferers of chronic fatigue (mental disorder F 48). There are many ME/CFS patients who by definition of the illness are not ambulant and are therefore not included in any studies. We think that it is vital to bring to people’s attention that there have been serious methodological and theoretical flaws and concerns expressed about some of the trials that White et al may be referring to. Since these have not been referenced it is difficult to comment. We note that these published audits have not been referenced. Our concern is that medical treatments that may cause serious damage and in some cases demonstrably so, will be tested on even more vulnerable groups such as the severely affected and children and young people. The British ME/CFS community has been extremely concerned over the years at the lack of funding for biomedical research into this illness. This is particularly ironic since psychiatry has had a disproportionate amount of government funding in regard to what is recognised and classified by the World Health Organisation and the UK government as an organic brain disease - ME/CFS (ICD-10 G93.3) We therefore would presume that White et al would welcome more money being spent on biomedical research instead of psychiatric management regimes and treatments that have been comprehensively shown to at best make little difference and at worst, damage the health of many sufferers. Yours faithfully, Jane Bryant and Angela Kennedy REFERENCES 1. Carruthers et al (2003) “ Myalgic Encephalomyelitis/chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” Journal of Chronic Fatigue Syndrome, VO. 11 (1) 2003. 2. Sheperd C. Pacing and exercise in chronic fatigue syndrome. Physiother 2001 Aug;87(8):395-396. 3. Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Pamirez G. Interventions for the treatment and management of chronic fatigue syndrome.A systematic review. JAMA 2001Sep 19;286(11):1360-1368. 4. Prins JB, Bleijenberg G, Bazelmans E, Elving L, de Boo TM, et al. Cognitive behaviour therapy for chronic fatigue syndrome; a multicentre randomised controlled trial. Lancet Mar 17, 2001;357:841-847. Competing interests: None declared
Re: Don't ignore the facts 8 June 2004
Ellen Goudsmit, Retired psychologist Teddington TW11 9QX Send response to journal: Re: Re: Don't ignore the facts	Mr. Jameson (eBMJ 8th June) claims that: "In fact all of the physical symptoms of CFS/ME can be very easily and elegantly explained in terms of a primary psychosocial cause". Not by this psychologist, they can't. Perhaps Mr. Jameson can answer two questions: 1. Can he explain how psychosocial causes result in the almost universal symptom of intolerance to alcohol? (This knowledge could be very useful in the battle against alcoholism.) 2. ME has also been documented in animals, as Mr. Jameson, as an expert, must know. Can he tell me why the horses failed to recover from post-viral fatigue after their enteroviral infections? Were they misled by pressure groups on the internet? Did they become afraid of activity, misinterpreting their post-exertional malaise as a sign of ongoing disease rather than a lack of fitness? Were the ailing mice documented in several reports using illness to escape the rat race? Did the cows and cats develop anxiety, depression or a somatisation disorder, perhaps because they couldn't cope with the pressures of modern life? I mean, grass ain't what it used to be and if they were really honest with themselves, perhaps 8 out of 10 cats wouldn't prefer their food out of a tin? Reading some of the responses to Raine et al, one thing stands out. There are too many people, including some with medical degrees, who still refuse to acknowledge the complexity of CFS. CFS is more than fatigue, worry, aches and pains. And anyone advocating evidence-based medicine must accept that CBT has not been shown to be effective in ME (as defined by Ramsay), or indeed, for CFS where there are neurological symptoms and\or signs of immune activation. Improvements have only been noted for tiredness and emotional distress. Admittedly, about 50-70% of broadly-defined cases do report feeling better, using global measures, but about half of those continue to meet the criteria for CFS. In short, CBT helps some patients to cope but it's far from curative. And counselling is just as good (cf Ridsdale et al). Real evidence-based medicine means you can't just ignore the findings you don't like. Come on psychiatrists. Practice what you preach. Ridsdale L et al. Chronic fatigue in general practice: is counselling as good as cognitive behaviour therapy? A UK randomised trial. Br J Gen Pract 2001, 51, 19-24. Competing interests: None declared
Risks associated with exercise programmes need to be recognised and investigated further 8 June 2004
Tom P Kindlon, Unavailable for work due to ill health Dublin, Rep. of Ireland Send response to journal: Re: Risks associated with exercise programmes need to be recognised and investigated further	Editor, I welcome that Drs. White, Wessely and Sharpe are willing to rebuke Dr. Johnson for his comments "which seem to denigrate patients" (1). I hope they will continue to rebuke others who do this in the future. When referring to cognitive behaviour therapy and graded exercise therapy, they mention findings which they claim show that "the benefits ... outweigh the risks in ambulant adult patients". I think the risks involved in somebody with ME doing graded exercise programmes need to be investigated further. Is it worth a percentage of patients becoming severely (and often chronically) affected following graded exercise therapy programmes (2) so that some other patients, who may never have had strictly-defined ME but some other fatigue syndrome which does not have an abnormal physiological response to exercise, can benefit? When investigating drugs, a risk-benefit analysis is often used - if a percentage of patients, which in some cases might only be a couple of percentages or less, encounter serious side-effects to a drug, sometimes that drug is not released on the open market or there is clear warnings with its use. From the way I have seen many people recommend exercise programmes to people with ME or CFS, there is often little or no reference made to any risks or the long-term consequences that appear to affect some people. Is this responsible behaviour? Would it be acceptable for patients with other conditions? What is required, I believe, is more research into the causes and underlying physiological basis of the abnormal response to exercise in some patients. This could lead to screening so that people at risk could be advised not to do graded exercise programmes, if necessary. Instead, what appears more likely to happen, from the initial media coverage from the sort of trials in progress at the moment (3), is that more "at risk" people will be encouraged to do graded exercise programmes in the future without any such physiological screening. 1) http://bmj.bmjjournals.com/cgi/eletters/328/7452/1354#62096 2) 25% ME Group's 'Severely Affected ME (Myalgic Encephalomyelitis) Analysis Report on Questionnaire issued January 2004', March 2004. 3) "Fit to fight fatigue", The Times, February 02, 2004 http://www.timesonline.co.uk/newspaper/0,,170-983433,00.html Competing interests: Somebody with ME who was, in the early years of the illness, an ambulant patient able to study at a high level but who has spent the last 10 years severely affected as a result, it appears, of the exercise programmes I was advised to follow.
The thyroid in chronic fatigue 8 June 2004
Bo Wikland, M.D Hötorget Medical Centre, P.O. Box 1417, SE-111 84 Stockholm, Sweden Send response to journal: Re: The thyroid in chronic fatigue	It is unfortunate that Rosalinde Raine and her coworkers fail to address the issue of underlying medical causes of chronic fatigue (CF). We investigated thyroid autoimmunity in patients complaining of CF (>1 year)(1). In addition to conventional biochemical tests, the thyroid was examined by fine-needle aspiration cytology. No less than 40% of our CF patients showed definite evidence of chronic lymphocytic (autoimmune) thyroiditis. Thyrotropin (TSH) values were scattered in these patients, median value 3.8 mU/L. Independently of baseline TSH, thyroid hormone supplementation was followed by striking symptomatic improvement in those with cyto-morphologically documented thyroid autoimmunity. In our experience, a substantial proportion of CF patients have an underlying condition of readily and rewardingly remediable thyroid autoimmunity. Reference 1 Wikland B, Löwhagen T, Sandberg P O. Fine-needle aspiration cytology of the thyroid in chronic fatigue. Lancet 2001;357:956-7. Competing interests: None declared
And still the debate rambles on 8 June 2004
Jean E Long, ME survivor unable to work PO4 9AA Send response to journal: Re: And still the debate rambles on	A Chaudhuri has quite rightly highlighted the unhelpful reference to ME being one of a group of “medically unexplained illnesses”. There has been good quality worldwide scientific research, including that done in the UK that proves otherwise; though in common with many medically accepted health problems they are not yet fully understood. It beggars belief that those who still insist on using this term remain so influential. If I as a mere patient can find evidence to the contrary why haven’t they? Problems over understanding this illness and it’s ramifications have escalated since the adoption of the Oxford criteria, the insistence on it’s name being changed to Chronic Fatigue Syndrome, and the assertion that our personalities, deconditioning, and wrong thinking have led to our demise. If only it were that simple and easy to fix. After 17 years of this illness I went into a downward spiral 6 years ago; Dr Betty Dowsett would immediately recognise the significance of this. As things got worse my future looked bleak I am by nature a survivor not a victim. I knew there would be answers and a way of understanding what was happening to me but I had to go beyond these shores to find what could help me. What I learned shocked me. Why had I not been told about all this before? Why have our doctors not been informed? As I learned more I finally understood my earlier medical history too which remains very much a part of my current problems but these issues had just been swept aside, that what’s happens if your diagnosis is ME or CFS. I also began to understand better all that has happened to me since the unwanted arrival of full-blown ME. More exciting there were solutions, yes there are treatments and seemingly effective ones too. As a result of pursuing some of these protocols I have already begun to feel the benefits of them, my future looks rosier now than it did. Bo Wikland, M.D has described one such finding and subsequent treatment which can make a difference, there are more. Why are these not being studied? Why is there such an emphasis on just CBT and graded activity/exercise programmes when the latter has already been known to harm a significant number of patients with ME? And still the debate rambles on. When instead everyone should be putting his or her time and energy working with other genuine experts worldwide until a full and complete understanding of ME has been achieved. Only then will real and more effective treatment protocols be offered to all who need them. Competing interests: None declared
Effective Treatment? 9 June 2004
Kelwyn D Williams, Consultant Psychiatrist Denmark Road Day Hospital, Gloucester GL1 3HZ Send response to journal: Re: Effective Treatment?	Diagnositc criteria for Chronic Fatigue Syndrmone (CFS) vary. Aetiology is uncertain. Best avaliable evidence suggests graded exercise and cognitive behavoural therapy given by highly skilled therapists in specialist centers as the only interventions likely to be beneficial. These factors perhaps explain the uncertainty of General Practitioners regarding identification and effective treatment of the condition. Competing interests: None declared
Re: Effective Treatment? 9 June 2004
Geoffrey Sullivan, Not working due to illness Brighton BN1 4GR Send response to journal: Re: Re: Effective Treatment?	So "best available evidence suggests graded exercise and cognitive behaviour therapy given by highly skilled therapists in specialist centres as the only interventions likely to be beneficial" do they? Well I, and the great majority of people with ME (PWME), would beg to differ. Who decided that this is the best available evidence? Oh yes, the psyches themselves who have constantly devised highly biased and highly selective treatment trials! Indeed there have also been many trials that have shown precisely the opposite, that Graded exercise and CBT are at best useless and at worst (commonly) highly damaging. So, no, Graded exercise and CBT have NO real evidence supported by open and fair unbiased research trials to support such sweeping and damaging statements that they represent the best available evidence for the only treatment likely to be beneficial to PWME. Maybe if you psyches didn't constantly go around promoting these false and biased views then GPs and other doctors might get to see the true picture and all PWME would be much better off? As for White et al complaining that their beloved treatments are being denigrated by PWME then all I can say is now you know what it feels like! A PWME faces denigration every day of their life thanks in the main to them espousing their views and promoting the view that ME is a psychological condition. Their comments over the years about PWME have been downright denigrating and offensive at times. These comments are a matter of record. So who is it really causing the problems here? Geoffrey Sullivan Competing interests: None declared
The mysterious Barrington Johnson 10 June 2004
Adam Jacobs, Director Dianthus Medical Limited, London SW19 3TZ Send response to journal: Re: The mysterious Barrington Johnson	I have read with interest the lively debate on this page caused by the unusually outspoken comments of a certain 'Barrington Johnson'. I was particularly intrigued by Tom Kindlon's astute observation that 'Barrington Johnson' appeared to have the same email address as a 'Fred Johnson' on another page. This, coupled with Peter White et al's observation that there is no 'Barrington Johnson' on the GMC register, strongly suggests that a pseudonym has been used. But what can we infer about the real identity of our mystery correspondent? Well, the obvious thing to do when choosing a pseudonym is to use an anagram of your real name. Now, try as I might, I couldn't think of any names that were an anagram of Barrington Johnson. But if we allow for the possibility that the anagram was made up of not only the correspondent's real name, but also a brief description of his character, there are several possibilities. The first name that came to mind was Jon Harrington, snob But the real identity might also be Ron Shannon Jr, bigot or (and this is my favourite) Rangoon Bonn Jr (I leave it as an exercise for the reader to work out Dr Bonn's character description) But why assume the real identity is that of a male? Perhaps she is really Ann Hog-Osborn Jr, nit But then I realised I was making this more complicated than it needed to be. After all, the email address clearly belongs to someone called Johnson, so maybe only the Barrington part is an anagram. This really seems the most likely explanation. I now feel confident that our mystery man's real identity is none other than the man known to his friends as Ranting Rob Johnson If you're out there, Rob, do let us know how close I am. Competing interests: None declared
Jam on both sides? 10 June 2004
Suzy Chapman, Parent of young adult with ME Poole, Dorset BH16 Send response to journal: Re: Jam on both sides?	I'd like to draw readers' attention to the following document which can be found on a website called "Chronic Fatigue and Chronic Fatigue Syndrome A Practical Self Help Guide". It is entitled: "PHYSIOLOGICAL ASPECTS OF CHRONIC FATIGUE SYNDROME Explaining the symptoms of CFS: An article explaining the physiological basis of some of the more common, and some of the more obscure, symptoms that trouble CFS sufferers" This is such a curious document that I have taken the liberty of reproducing it in full since I feel it deserves a wider audience. The document lists many of the symptoms which may be experienced by sufferers of CFS and goes on to explain every single one of them in terms of "deconditioning", "faulty illness beliefs" or anxiety. And it makes some very sweeping statements indeed, for example: "As we said there is nowgood [sic] evidence to show that all of the above effects are reversoble [sic] by a programme of gradual physical rehabiliation [sic]. Learning to spot and deal with sources of stress is also important. Lastly, not worrying too much about symptoms is probably crucial The more one worries about a symptom, the more one focuuses [sic] on it, and the more stress this generates, which in turn worsenes [sic] the symptom. Is this document referenced throughout with research papers? No, not a single reference. Has it been carefully checked for typos, as one might expect in a serious and professional document? Apparently not. So has this document been posted on the net by a 'non professional'? Well no, it is taken from the website of Kings College Hospital's Chronic Fatigue Syndrome Research and Treatment Unit. And this is where is starts to become confusing, because click on the link "About this unit and its research" and you'll be taken to a page listing recent research papers - neuroendocrinological research, neuropsychological research, research into infectious agents, epidemiological research, immunological research etc. As the site says, research costs money and grateful thanks are expressed to a number of organisations who support the Kings CFS research programme - The Linbury Trust, Pfizer UK, Shire Pharmaceuticals, South Thames Locally Organised Research Scheme and The Wellcome Trust. So here we have a CFS Research Unit headed up by Professor Simon Wessely with Dr Trudie Chalder and colleagues beavering away on the one hand on costly research programmes into an illness the symptoms of which they are simultaneously peddling on the Unit's own website as being caused and maintained by nothing more than "deconditioning", "faulty illness beliefs" and anxiety - and which are "all reversible by a programme of gradual physical rehabilitation". It's a rum do, as my old grandad used to say. http://www.kcl.ac.uk/cfs/symptoms.html PHYSIOLOGICAL ASPECTS OF CHRONIC FATIGUE SYNDROME Many people with CFS are concerned that their distressing symptoms may be related to a disease that hasn't been detected. Others are concerned that a virus (if one occurred at onset) is still present or has caused physical damage to the body. However, intensive research has tried to establish whether disease, deficiencies or any other abnormal changes in the body may explain the very distressing and debilitating symptoms experienced by people with CFS. To date, it appears that there is no one cause of CFS. Patients complain of a variety of different triggers, e.g. different types of infection or stressful life events. Some sufferers can pinpoint the exact date that it started. For others the onset is more gradual. Difficulty maintaining previous activity levels is common to all sufferers. Some sufferers feel so ill that they rest for long periods and give up many of their previous activities including work, social activities and managing the home. Others may be able to function at a reasonable level, e.g. go to work or look after their family, but due to pushing themselves so hard in the day, may do very little in the evenings or at weekends due to their exhaustion. Others tend to do too much on "good days" and push themselves too hard for the level of their stamina resulting in resting for long periods on other days. Over time, reduced or irregular activity and increased periods of rest cause physical changes in the body. These changes cause unpleasant sensations and symptoms that can be very distressing. It is important to point out that these changes are reversible with physical rehabilitation and/or exercise. Research has looked at the effects of rest in healthy people when they reduce their activities and many similarities between CFS patients and healthy inactive people have been noted: Changes in muscle function · A decrease in the number of active cell mitochondria (tiny parts of the cell that act as a powerhouse) and their enzymes have been found in the muscles of CFS patients when compared with healthy active people. The reduction of cell mitochondria has also been found in healthy inactive people. Fewer cell mitochondria may lead to production of lactic acid at low exercise levels, which in turn limits muscle performance. These changes may account for the feeling of a lack of power or energy in the muscles. · As reduced activity leads to less efficient muscles (reduced strength, tone and size), it is more difficult for the muscles to squeeze the blood back to the heart causing blood to pool in the lower part of the legs. Pooling of blood can cause pain both during activity and rest. · When muscles are not used regularly, they become unfit or de- conditioned. When these muscles contract during activity, uneven stresses are produced. This may result in a feeling of weakness and instability followed by delayed pain and discomfort. · In all individuals, muscle pain and stiffness is a natural consequence of beginning a new exercise programme or when unaccustomed exercise is taken. Changes in the cardiovascular system · The cardiovascular system (which incorporates the heart and blood vessels) becomes out of condition very quickly with rest. The longer you rest the more changes occur. · Physical changes that occur with cardiovascular deconditioning include:- - reduced blood volume after 1or 2 days bed-rest - reduced volume of red blood cells after 8 days bed-rest which reduces oxygen carrying capacity of the blood - volume of the heart reduces by about 15% after 20 days of bed-rest therefore less blood is pumped to other organs These physical changes may result in making you feel breathless or dizzy when exercising, and contribute to your fatigue. · Following a "lying down" rest there is a drop in blood pressure on standing up (postural hypotension) due to blood pooling in the limbs and gravity when we stand up. Consequently, less blood returns to the heart and therefore less blood goes to the brain. The reduced blood flow to the brain causes dizziness and sometimes fainting on standing up. Regulation of body temperature · Due to changes in the blood flow to major body organs following prolonged rest, changes in body temperature occur. This may result in feeling hot and or cold, with excessive and inappropriate sweating at times Visual and hearing changes · Prolonged bed-rest results in a "headward" shift of bodily fluids. This may result in visual problems and sensitivity to noise Reduced calcium levels · During prolonged bed-rest, bones do not have to support the weight of the body or the pull of the muscles and lose calcium. Over a long period of time, this leaves bones brittle and easier to break Reduced tolerance to activity or exercise · General de-conditioning of the body occurs as a result of prolonged rest or reduced activity. This results in being able to tolerate less activity as fitness reduces. Muscle fatigue, feeling of heaviness as well as a general increase in overall fatigue occurs when active. Changes in the nervous system · One of the functions of the nervous system is to co-ordinate our muscles. However, regular performance of an activity is required to maintain good co-ordination. · Prolonged periods of inactivity therefore reduce our co-ordination. This may result in unsteadiness, clumsiness and reduced accuracy on carrying out precise movements Changes in mental functioning · Prolonged rest deprives people of intellectual stimulation and has a dulling effect on intellectual activity. This may impair concentration, memory, and our ability to find the correct word Alteration of the biological clocks The central "clock", which is located in the hypothalamus of the brain regulates many body rhythms that run on an approximate 24 hour cycle. These rhythms are called cicardian rhythms and they control vital functions such as: - sleeping and waking - feelings of tiredness and alertness - intellectual performance - memory - appetite - body temperature - the production of hormones, for example, cortisol - the activity of the immune system · Cicardian rhythms are responsible for your body "feeling" things at certain times of the day, for example, hunger, alertness, tiredness, needing to go to the toilet. The biological clock is affected by the events of the day and is reset each day by cues such as getting up or going to bed times, meal times and performing daily routines. Recent research has also shown that there are "local" circadian rhythyms within the body, with different systems and organs being more active at different times. There is also a third cycle, largely determined by night/day light/dark. it is now thought that part of the problems generated by disturbed diurnal routines are caused by not only these individual cycles being disturbed, but by them going out of synch. with each other. Your brain might think its 3am; your digestive system thinks its 8am (when it tends to be more active) but the light is telling you its noon.This dysynchronisation has been linked to many of the more common symptoms of CFS - distrubed sleep, poor digestion, alterations in appetite, headaches and of course fatigue. The biological clock's time keeping can be disturbed if not reset by these cues in situations such as: - flying across different time zones (jet lag), - working shifts - during illness · If regular cues are lost, disruption of the clocks results in a slipping of body rhythms that can lead to: - the "normal" intense feelings of tiredness at night shifting into the day making it difficult to cope with your usual routine. - the "normal" daytime rhythm getting shifted around to the night, making you feel more alert and causing difficulty in getting to sleep. This can lead to: - poor quality sleep at night - increasing fatigue during the day - poor concentration and forgetfulness - low mood - feeling unwell - headaches - muscle aches - loss of appetite - irregularities of bowel movement - alterations to immune functioning · As the symptoms of CFS are so similar to those of jet lag, circadian rhythms of people with CFS have been investigated. Evidence from some studies indicate that CFS is associated with the biological clock losing control of the body rhythms. · It is thought that an infection, a very stressful life event or an accumulation of persistent stress may contribute to us breaking our usual daily routine and normal sleep-waking cycle needed to reset the biological clock. This is because a stressful life event or an accumulation of stress can cause worry and disturb our sleep at night, leading to irregular getting up and going to bed times and increased rests during the day. · The biological clock then loses control over body rhythms resulting in the above mentioned severe physical and mental symptoms of CFS. Disturbance of the sleep-wake rhythm in CFS · Most CFS patients complain of poor quality sleep. Common problems include difficulty in getting to sleep, restlessness, wakening in the night and waking feeling unrefreshed and sleepy. · In a study where the sleep patterns of healthy volunteers was deliberately disrupted to be similar to those with CFS, they developed symptoms similar to those of CFS including feeling unrefreshed and physically weak, sleepiness, poor concentration and muscle aches. However, when they were allowed to sleep undisturbed, their symptoms subsided. This study indicates that a disturbed sleep pattern can cause some symptoms of CFS but that these symptoms are reversible. · Disruption of sleep can affect the activity of the immune system, possibly increasing vulnerability to colds and infection. Inactivity and being deprived of sleep cause an increase in the feelings of effort and fatigue when performing activity or exercise. Working on re-establishing a normal sleep/wake cycle is thus a crucial part of recovery Disturbance of cortisol production · Cortisol is a hormone whose production is controlled by a cicardian rhythm. Cortisol switches on our metabolism in the morning to prepare us for the physical and mental challenges of the day. Exercise and other stress causes an increase in the level of cortisol in the bloodstream. Prolonged stress however has been associated with lower cortisol in a kind of burn-out of the bodies physiological coping mechanisms. · Research shows that some CFS patients have a lower level of cortisol, but no disease has been found that would account for this finding. Low cortisol is also shown in people who have been through trauma. The low cortisol levels found in CFS patients may also be associated with disrupted sleep and irregular activity. · Low cortisol levels have also been found in other people who have disrupted sleep such as a) healthy individuals who have rested in bed for more than 3 weeks b) healthy workers after working 5 nights of shift work c) people suffering from jet lag Low cortisol may add to the feeling of tiredness, decreased alertness and poor performance seen in CFS and night shift work. - Whereas high cortisol allows us, in a flight or fight situation, to focus on the immediate threat, low cortisol is associated with difficulty in distinguishing the "important signal" from the "background noise" - like when you are in a crowded room and the background noise prevets you focussing on the person you are talking to. This does seem to be a common experience of CFS. It would also account for some of the light and noise sensitivity. It is as if a crucial "filter" has been removed from the persons perceptual system. Re-establishing more "normal" activity and rest patterns, and dealing with stress should help to reverse these changes. Anxiety and Stress We normally think of anxiety as being all in the head. In fact it is largely a bodily thing, and efffects and involves most systems of the body. Anxiety is not always obvious either. It may be more like a background stress, subtle but persistent. The following is a description of some of the physiological compnenets of anxiety. Bear in mind that they are not always as dramatic and obvious as a panic attack. The research shows that it is the persistent low grade anxiety - Stress in other words - that has the prfoundest long term effects. · Anxiety is an automatic physical response of the body to a threatening or stressful situation. We can all remember having butterflies before an exam, an interview or going to the dentist! · When we are in a situation that makes us feel anxious, there is increased activity of the central nervous system and an increased amount of the hormone adrenaline is released into the bloodstream. · These natural changes have a protective function in preparing us for action when we feel threatened or encounter a stressful situation. However, the physical feelings that we experience when anxious can be very unpleasant. · Having CFS can at times be very stressful. Not only may you be dealing with feeling ill, but you may also have other concerns related to your illness such as concerns about finances if you are unable to work or worries about the cause and effects of CFS on yours and others lives. · These worries may at times trigger feelings of anxiety. Entering into a situation that you perceive as being stressful, whether doing something for the first time in months, increasing exercise etc, may lead to a further increase in anxiety. · The physical effects of anxiety include the following: Increased heart rate This can be felt as a racing pulse, palpitations, pounding or tightness in the chest. Some people feel very frightened by these sensations and can become more anxious resulting in a further release of adrenaline that maintains the physical sensations. This also causes a rise in blood pressure. Breathlessness which can lead to hyperventilation · This natural response to being anxious enables our lungs to be filled with oxygen to prepare us for action. · However, if over-breathing (hyperventilation) continues for a while, an array of unpleasant symptoms may occur because it reduces the amount of carbon dioxide in the blood. This changes the balance of chemicals in the blood causing tightening of the blood vessels and reduced blood supply, especially in the brain. This reduced blood supply to the brain causes sensations such as light-headedness, dizziness, faintness, feeling unsteady, clumsiness, blurred vision, pins and needles, tingling or numbness (sometimes one- sided) in the limbs or face.. Cramp-like muscle spasms may be experienced, particularly in the hands and feet. Increased sensitivity to light and noise may also occur. Other abnormal sensations such as feelings of being detached from oneself, feelings of unreality or being out of control may also occur. · Feeling faint is misleading because overall blood pressure is high in anxiety and fainting only occurs when blood pressure is very low · The muscles of the chest wall can be over-used during hyperventilation which may lead to chest pain or discomfort. If these sensations are interpreted as a major problem, ie as a problem with the heart, it can lead to a further increase in anxiety and adrenaline production leading to an increase of unpleasant sensations. Over-breathing also results in increased use of the muscles of the head, neck and shoulders resulting in headaches, and localised stiffness and pain. Over-use of the neck muscles in hyperventilation can be accompanied by sensations of tightness or a sore throat. Excessive mouth breathing and reduced saliva production may also occur as a result of the increased nerve activity and release of adrenaline. This causes a dry mouth, swallowing difficulties and the feeling of a lump in the throat. Blood flow is altered When anxious, blood is redirected to muscles to prepare for action. Reduced blood flow to the skin may cause pallor, pain, coldness of hands and feet and sometimes numbness or tingling. Reduced blood flow to the bowel affects the passage of food and can result in symptoms of irritable bowel, for example, constipation and or diarrhoea and abdominal discomfort. Muscle tension There is an increase in the tension of the muscles to prepare them for action. This can cause aches, pain (particularly in the shoulders, neck, jaws and head) and fatigue. Twitching or trembling muscles may also occur. Visual disturbance Increased nerve activity affects the muscles of the iris (coloured part of eye) causing dilation of the pupils, which lets in more light. The shape of the eye lens is altered to help improve side and distance vision. Together, these changes increase visual sensations that can be experienced as blurring of vision. Sweating Increased sweating occurs to allow for heat loss causing clammy hands and feet Sleep disturbance As adrenaline arouses, sleep disturbance such as difficulty getting to sleep or frequent wakening is very common at times of stress and can be accompanied by nightmares and sweating. Mental functioning Anxiety may affect mental functioning in a number of ways and contribute to the following: -Mood disturbance; eg irritability, being easily upset, -Inability to concentrate, forgetfulness, indeciseveness -Restlessness; eg fidgety, can't sit still -Tendency to go over things again and again · Everyone experiences physical symptoms of anxiety in a different way and rarely experience all of the symptoms listed above. When these symptoms are extreme, they can easily be misinterpreted as signs of a serious disease that can trigger further unpleasant symptoms that can occasionally trigger a panic attack. · An increase in nerve activity and adrenaline production can precipitate feelings of weakness and exhaustion that adds to the fatigue and muscle aches of chronic fatigue syndrome. · During periods of prolonged physical or mental exertion, there is increased activity of the nervous systems and increased adrenaline production that leads to symptoms similar to those experienced in a flu like illness, such as aches and pains, headache, sweating, feeling hot and cold, chest tightness and sore throat. These symptoms may lead a person to reduce or avoid activities as they may believe that they are coming down with flu or a cold. As physical activity releases muscle tension, limiting activity can perpetuate the physical effects of anxiety and lead to further deconditioning. LIFE STRESSES AND LOW MOOD Many patients experience major ongoing life stresses and problems related to the effects of their condition. These may include one or more of the following: Financial difficulties due to no longer working, reducing hours etc Worries about keeping a job or maintaining studies Changing role within the family, ie loss of responsibility Reduced social contacts leading to feeling isolated Strained relationship with partner due to them having to do more at home Feeling guilty about not being a "good" parent These difficulties can understandably trigger feelings such as frustration, helplessness and loss of control over life. These feelings which are a natural human response to stress, can lead to low mood for some people and depression in others. Low mood can lead to a variety of problems including tiredness, which can further reduce the desire to be active. Further reduction in activity exacerbates the deconditioning process. Worrying about problems can disturb sleep at night, which can then lead to sleeping later the following day and contribute to developing a poor sleep pattern. working on low mood is thus also a vital part of recovery As we said there is nowgood evidence to show that all of the above effects are reversoble by a programme of gradual physical rehabiliation. Learning to spot and deal with sources of stress is also important. Lastly, not worrying too much about symptoms is probably crucial The more one worries about a symptom, the more one focuuses on it, and the more stress this generates, which in turn worsenes the symptom. By Mary Burgess PhD - based on the work of Pauline Powell. Competing interests: None declared
Re: Medical correctness and evidence based medicine 10 June 2004
Douglas T Fraser, ex-Violinist London W6 Send response to journal: Re: Re: Medical correctness and evidence based medicine	Editor Perhaps Dr. White and Prof`s Sharpe and Wessely need to be reassured that although their concerns are greatly appreciated, there is no need for them to feel over concerned. If they have helpful "treatment approaches", pretty well everyone affected by ME/CFS around the entire globe will be very interested and most grateful indeed. News of helpful approaches which actually work will spread like wildfire, especially via the Internet, such is the interest in any promising new treatment. In addition, this news may prevent the further spread, especially via the Internet, of "false illness beliefs" ( FIB`s about MUPS) many of which seem to be have been translated into dozens of foreign languages. I heartily agree with their assertion that more science of the biomedical variety is required to defeat this disease, but I am more than a little puzzled over their call for "dialogue". Do they mean dialogue between themselves and sufferers, themselves and AfME who represent but a fraction of a large population of ME/CFS sufferers, or between colleagues, biomedical researchers, virologists, immunologists, neurologists etc., both here and abroad, where there is good biomedical work in progress ? Whichever, I sincerely hope that the reason Dr Peter White and the others who made a conscious decision to walk out of the UK Chief Medical Officer`s Working Party on ME/CFS in 2002*, thereby aborting any dialogue whatsoever with colleagues, sufferers, carers, charities, and other researchers left at the Party, was also motivated by a concern for others, and an equal concern over the obvious need for more biomedical science. One can only speculate, but perhaps by that point just prior to their walking out, it had become obvious to Dr White and those others who walked out, that more rigorous biomedical science simply wasn`t going to be a high priority recommendation in the final CMO Report, whereupon a "walk-out" protest was deemed a responsible and reasonable tactic to encourage a return to objective Science, on behalf of UK citizens who will be footing the bill ? Douglas T Fraser * http://bmj.bmjjournals.com/cgi/eletters/324/7328/7 Competing interests: None declared
Re: Don't ignore the facts 10 June 2004
Erik R Johnson, n/a Incline Village, NV 89450 Send response to journal: Re: Re: Don't ignore the facts	David Jameson's description of his personal battle with "job induced stress/depression" and his subsquent recovery by simply quitting his job and reducing stress are entirely consistent with someone who could benefit from "the Placebo effect" and behavioral therapy. The concerns of real CFS/ME patients are primarily with the physical discomfort and limitations of the illness. The denigration of therapy from those "who are trying to help" is a reflection of our frustration at the utter inability of so many physicians to understand that the physiological abnormalities represent a physiological illness and construct grasping and inappropriate therapies instead of concentrating on real causes. People who have truly experienced CFS/ME are shocked at the incredible inability of doctors to understand that "We are depressed because we are sick. Not sick because we are depressed." -Erik Johnson Competing interests: None declared
Re: And still the debate rambles on 10 June 2004
Erik Johnson, n/a Incline Village, NV 89450 Send response to journal: Re: Re: And still the debate rambles on	It beggars belief that proponents of psychological theories of causality for CFS/ME fail to understand that their arguments are moot. Their "somatization disorder" concepts of "instant deconditioning" and exercise intolerance after a flu like illness have always been insupportable. The selection of the trivializing "CFS" after earlier dismissive abusive attempts at minimizing this illness such as "Lake Tahoe Mystery Illness" and "Yuppie Flu" shows that the illness naming process itself makes a statement about the mindset and conceptual abilities of the physicians who had the power to make such determinations. Prof Wessely has only recently responded to the evidence and admits that he has seen proof of an unusual inflammatory response in patients with these syndromes. The fact that it has taken so long for the psychiatric theorists to respond to inarguable evidence and the vehement assertations of their clients demonstrates that a serious unscientific mental methodological flaw afflicts those who currently hold the reins of etiological investigative processes. The lesson to be learned from this debacle has far reaching implications for all emerging illnesses. Will physicians who instantly promulgate psychological theories to explain unfamiliar complaints be left in positions from which they can also dismiss unusual signs and symptoms from Sarin, Ricin, Anthrax, Smallpox, Aflatoxins or any other Biological weapons that terrorists are attempting to acquire and deploy on civilian populations? -Erik Johnson Competing interests: None declared
Re: Re: Re: Grey areas at the interface of psychiatry and medicine? 10 June 2004
Erik Johnson, n/a Incline Village, NV 89450 Send response to journal: Re: Re: Re: Re: Grey areas at the interface of psychiatry and medicine?	Has there been any illness in history that wasn't completely or partially ascribed to personality defects or psychological disorders until identification of a precise etiology silenced such speculations forever? Has there been even one? Psychotheorists seem to have little compunction about waiting for phsyical evidence before they "Try on their theories to see if it fits". This has caused each emerging illness to go through a "blame the patient" phase in which victims of illness are "guilty until proven innocent" of mental defects or "behaviors that caused or contributed to the illness". People who are guilty of nothing except being sick cannot "change their attitude" and then have the charge of "obstinate" laid onto that of hypochondria and malingering. This almost-inevitable phase virtually guarantees that support from family and "friends" will be withdrawn in the same way that people are told to help an alcoholic by withdrawing all help "so they can hit rock bottom and be forced to recognize and deal with their dysfunctional behavior". Sick people are abandoned with official sanction! This climate of "psychologizer induced patient destruction" is only ended when the etiology of the so-called "mental illness" has been unquestionably extablished and never by all the cumulative evidence that should have cast the psychological concept into doubt. Yet for all the damage this has caused, those responsible have never been called to account for their abuse and the process repeats itself for the next emerging "unexplained illness". When will promoters of psychological concepts learn from history and be given pause by their legacy of damage? When will society see the injustice and hold the perpetrators responsible? -Erik Johnson Competing interests: None declared
Re: Re: Don't ignore the facts 10 June 2004
David W Jameson, former patient Belfast, BT4 Send response to journal: Re: Re: Re: Don't ignore the facts	Sir, Erik Johnson's message on the 10th of June provides a vivid example of why CFS research is in such a mess. Rather than actually discussing the scientific points I brought up, instead he has launched into what appears to be a libellous personal attack. "job induced stress/depression", and "recovery by simply quitting his job and reducing stress" - not only are these statements factually incorrect, but I have never posted such comments anywhere. If Mr Johnson actually took the time to read what I have written on CFS/ME (1), he would see that the central part of my theory is that the illness is caused by a lack of stress tolerance rather than stress itself. In fact, this is something that Mr Johnson himself appears to agree with, according to the following comment from a message he posted on the cfs_research yahoo group: "This is clearly a dysregulated stress response that lowers the threshold of tolerance rather than any kind of normal response to a stress or stressor." His second paragraph clearly shows that he doesn't think I am a "real" CFS/ME patient, even though he knows precious little about my battle with the illness. This attitude is, unfortunately, all too common among many CFS/ME patients who tend to attack people who have recovered due to psycho-social factors, saying that they never actually had the illness in the first place. Erik Johnson is doing exactly the same thing as our friend "Barrington Johnson". David Jameson REFERENCES (1) http://www.mind-body-health.net Competing interests: None declared
Re: Don't ignore the facts 11 June 2004
Erik R Johnson, n/a Incline Village NV 89450 Send response to journal: Re: Re: Don't ignore the facts	This situation will not improve until we get rid of old notions of hysteria and neuroses causing psychosomatic illness and actually do research into how the long term placebo effect works to cure CFS/ME and related illnesses." -David Jameson http://www.mind-body-health.net Quotes from David Jamesons website. "Contrary to popular opinion, burnout is not caused by too much stress. Rather, it is the attitude to the stress that is important." "The critical point seems to be the perception of the stressful event, or the person's attitude towards it". "Burnout is likely to be the body's protection mechanism against unnecessary and potentially dangerous long-term stress". "Some mechanism acts to limit HPA axis activiation in the hypothalamus, resulting in a reduced ability to cope with stress and (more importantly), a reduced motivation and reduced energy level, causing the person to rest and conserve energy". "psychological factors seem to be critical in perpetuating the illness and in determining whether or not recovery occurs". "Many cases of CFS begin as job related burnout, with CFS developing when the person continues to work in the stressful job." Mr Jameson. Does this not sound like you are retaining the old notions that mental attitudes predispose, create and perpetuate the illness"? And that we can utilize the "power of the mind" that was responsible for the illness to defeat it? Why have the various "cures" that should have induced the placebo effect failed to eradicate CFS/ME? Should these "cures" have included the instructions; "Effective only if you believe"? Perhaps you can pursuade a child with CFS/ME to change the attitude that is perpetuating his illness, but I'm too old a dog to learn that trick. -Erik Johnson Competing interests: None declared
Re: Re: Don't ignore the facts 11 June 2004
David W Jameson, former patient Belfast, BT4 Send response to journal: Re: Re: Re: Don't ignore the facts	It appears that Mr Johnson is so blinded by his preconceived ideas about the placebo effect and "illness beliefs" that he misses the important point: What seems to cure people from CFS/ME is having a highly motivating activity that takes over their entire life. Whether this is a job, a "placebo" treatment or an alternative therapy doesn't matter. Belief doesn't matter. What does matter is the energy, commitment and motivation put into the activity. You can call this a change of lifestyle, increased "flow", or a change in attitude, but none of these phrases really explain it very well. To get a real sense of what does result in recovery you need to look at the experiences of patients themselves. Other factors such as pacing, diet, stress reduction and rest are also important, but are unlikely to result in full recovery on their own. David Competing interests: None declared
Unknown cause does not mean no treatment 11 June 2004
Joan McClusky, Medical writer New York, Ny Send response to journal: Re: Unknown cause does not mean no treatment	Illnesses have been variously and erroneously ascribed to witches, night air, marsh fumes, the wrath of God, bad star alignment, and a host of other factors. Florence Nightingale refused to believe in germs, but her focus on cleanliness (as a worthy goal in and of itself) significantly reduced infection-related mortality in the Crimean War. Perhaps what we are seeing with these illnesses is a confluence of as -yet-unidentified internal factors, some of which are appealing and others of which are not. But to ignore a treatment that seems to work in at least some people because it suggests weakness of character or some other fault- -particularly when the causes have yet to be identified--is perhaps counterproductive. Competing interests: None declared
Evangelism and Tangents 11 June 2004
Jean E Long, ME survivor unable to work PO4 9AA Send response to journal: Re: Evangelism and Tangents	I too have checked out David W Jameson’s web site, and have no doubt for those who have suffered “burn out” his advice will be well received. Clearly the aetiology of his health issues are somewhat different from those of others diagnosed with ME or CFS, or have children with this illness, who have contributed to this debate; and it most definitely differs from my own. When faced with an illness that is so badly understood, and for which there is no known cure the very first steps usually taken are addressing lifestyle, diet, and any issues which might be affecting us in terms of stress and coping abilities. Counselling and the better CBT programmes can be a part of that process and no one doubts that where needed these can make a positive difference. But they do not cure ME. Unfortunately David Jameson chose to go about all this in a predictably evangelical style, he has closed his mind to any theories or scientific evidence which might question his own beliefs, perhaps he has not travelled down as far his road to a holistic recovery as he currently assumes. He has demonstrated the very blinkered vision that underlies the cause of our current demise. But he is in good company though it would seem, as other rapid responses here have shown. This has been an unnecessary tangent, which unfortunately diverts attention away from the very real issues that this debate has finally brought to the attention to doctors. There is good quality scientific evidence which helps to explain the health issues and disabilities we all share. There are also a few doctors who have looked into these, have begun to make more sense of them, and who are now able to give their patients essential and beneficial treatments; even more importantly they have given them hope. Competing interests: None declared
Re: Re: Re: Don't ignore the facts 11 June 2004
Jessica N Wilkinson, patient London Send response to journal: Re: Re: Re: Re: Don't ignore the facts	Whatever illness Mr Jameson had, and of course, I believe that he DID have an illness, it is nothing like the illness I have. Wow, if a highly motivating activity could cure me from my ME, I would be cured 10 times over! I have a job, which I enjoy more than anything. I never wake up in the morning and dread coming to work. I walk around feeling completely at home. Appariently my 'inner light' shines through as I interact with my patients (I am a Radiographer), and people often say how happy I am. Yes, I am happy, I enjoy my job! I have a great home life with lovely nieces and nephews to care for. I have a UK-wide professional group which I run and which gives me no end of pleasure. I am a church-goer. I live a life. Believe me, I am the person who puts all my (available) energy into my life. I do not let my illness get me down. I want to be full of life, positive and forward-looking. Most of the time I am all of these. What worked for Mr Jameson, unfortunately does not work for me. I have been praised for my energy, commitment and motivation! It hasnt cured me! How many patient's experiences has Mr Jameson looked at? not the ones of patients I know, including myself. I am very glad that he has found recovery for what, to him may have been as bad an illness as what it is for us. But has he not heard of 'post exertional malaise'? After a day's work, being my motivated, happy self, at the end of the week, after a great week at work doing what I love, I am ill. I am ill throughout the week too. I am so shattered by my motivating activity that my brain shuts down, my cognitive function is impaired, I become weak and wobbly, loose my balance, my brain becomes 'foggy', you name it, the symptoms of ME basically! I get these symptoms during the week too, and sometimes I am tempted to, and perhaps should, take time out of my, (sadly part-time) job to rest. On no account is activity helping my symptoms. On the contrary, the activity I do makes my symptoms worse. Most ME sufferers will say the same- activity makes them worse. And, if a positive mental state could cure me, it would have. I am optimistic. But I am also realistic. Competing interests: None declared
Re: Re: Re: Re: Don't ignore the facts 12 June 2004
Peter Culdrose, Severe M.E. sufferer, previously television director sw1 Send response to journal: Re: Re: Re: Re: Re: Don't ignore the facts	Sir, I have read with increasing dissapointment some of the postings over the last few days. The ones from Wesley, White and co. are of course unsurprising and unenlightening, repeating the same ill founded beliefs that they have had for years. It is always such a great shame that they dont simply repeat their core belief that they "dont believe that there is an illness called ME apart from the patient believeing that they have this illness". We would then all know where we stand. Instead they become more like politicians by the day and their language becomes more contorted and evasive of their core belief. The extract posted from their affiliated website of the hospital beggars belief. To say that the symptoms mostly stem from "innactivity" is simply bizzare. All ME sufferers that I know have struggled on for years with their symptoms, many of them finally having to give up through sheer exhaustion. If Wesley knew anything about the condition he would know that it is the physical disease that causes the symptoms, not lack of activity. It is clear from White and Wesley's postings that they really can be excluded from future serious discussion of the illness. They have no concept of the truth about ME sufferers. In response to Mr. Jamesons posts it seems unlikely that he ever had ME. Burnout because of stress or work etc, possibly, ME, no. He states that "What seems to cure people from CFS/ME is having a highly motivating activity that takes over their entire life." What utter rubbish. I had that prior to contracting ME and was self motivated in a fullfilling career and travelled the world in television production. Most of the other ME sufferers that I know were also highly motivated professional people. To suggest that to be more positive will make you well is simply ignorant. Anyway his posts are a side issue and distraction from the main discussion here. What is needed is money to be taken from Wesley and his kind and fed into proper physical research and funding to help and care for ME patients until a cure is found. The DLA issue which ME patients have to fight so hard for and the derisory amount of benefits which forces us to live in poverty is a disgrace to this country. And we are all hindered by the likes of Wesley and his views distracting funding into the real causes of the disease. What a relief it will be when the day finally arrives when the cause is found. I trust that when that day does arrive Simon Wesley will be the first to sincerely apologise to us all. Peter Culdrose Severe ME sufferer, formerly Televison Director. Competing interests: None declared
Professor Wessely's Legacy 12 June 2004
Erik R Johnson, n/a Incline Village NV 89450 Send response to journal: Re: Professor Wessely's Legacy	"Right from the start, ME has been identified with a refusal to accept the doctor's verdict." -Prof Simon Wessely "Listen to the patient. He is telling you his diagnosis." -Sir William Osler Professor Wessely seems determined to ensure his legacy will be a permanent place in history as the premier example of a physician who refuses to listen to his patients. The names of the physicians who scorned Ingatz Semmelweis for his innovation of medical prophylaxis have disappeared into the pages of history books. The peers of Dr. Barry Marshall who refused to review his association of ulcers with H. Pylori because he could cite no peer reviewed references supporting the concept escaped reproach for their scientific oversight because it appears not to be the responsibility of doctors to act like scientists and respond to evidence. The physicians who blamed AIDS on dissipated lifestyles continue their practice of medicine, completely unabashed at their inability to diagnose the existence of a horrific epidemic. Those who have long had confidence in medical science lose a little more trust with each confirmation that their trust was misplaced. It is imprudent for a physician to conclude that exercise intolerance which arises literally overnight following a flu like illness results from "deconditioning". It does not logically follow that a graded exercise therapy will correct a condition that could not possibly be from lack of exercise. Common sense tells people that this is so, and that is why lay people find the audacious temerity to refuse their physicians verdict. Accepting this and abandoning his psychological theories of causality is the best chance Professor Wessely still has to avoid becoming pre-eminent among those anti-Osler physicians who are only remembered for their inappropriate skepticism. I hope Professor Wessely will carefully consider how he wishes to be remembered and act in the spirit of Sir William Osler; "Listen to the patient. He is telling you his diagnosis." -Erik Johnson Competing interests: None declared
Endometriosis & Associated Disorders 13 June 2004
Geraldine F O'Sullivan-Hogan, Team Leader Wesleyville, Tralee, Co Kerry Ireland Send response to journal: Re: Endometriosis & Associated Disorders	In research Conducted by the National Institute Of health in USA they found that women with Endometriosis were 100 times more likely suffer from ME/CFS & twice as likely to suffer from FMS than the average American female. Endometriosis is a physical disease whose sufferes have had to endure the ignorance & arrogance of the medical profession in their dismissal of patients symptoms. Should Drs not be looking at diseases like Endometriosis to see what makes sufferers of it more likely to suffer from ME/CFS/FMS & perhaps they might find some common denominator in both illnesses. Competing interests: None declared
Mr Jameson has no "facts", but a theory, his individual experience, and plenty of wishful thinking 13 June 2004
Mike Neillands, patient n/a Send response to journal: Re: Mr Jameson has no "facts", but a theory, his individual experience, and plenty of wishful thinking	"Burn out" is in fact a differential diagnosis classified by the World Health Organisation at ICD code Z73.0[2], under "problems related to life-management difficulty", although that's not a psychiatric classification, it has nothing to do with G93.3 "diseases of the brain". The correct taxonomy was recently confirmed by Health minister Lord Warner who admitted the British IoP's so-called "WHO Collaboration Centre" had been miscatagorising ME/CFS (as F48.0 neurasthenia/CF) and that "there is now only one ICD code for CFS/ME, which is G93.3" (hansard for Tuesday 23 Mar 2004). [3] While it's academically interesting, Mr Jameson has nothing more than anecdote to support his "placebo" theory and conveniently ignores the repeated and demonstrable evidence from both medicine and other sufferers that their disease experience was sufficiently severe to enforce "lifestyle change" by itself, and in fact, remove pretty much of what most people would call "life", leaving precious little to "style" [4]. Perhaps Mr Jameson could expound on what "lifestyle changes" he would have a tube fed, paralysed mute sufferer with severe cognitive impairment rivalling that of Alzheimer's make? How is such a view reconcilable with a study which concluded that ME/CFS has "greater functional severity than heart disease, virtually all forms of cancer, and all other chronic illnesses." [5] It has been found patients with ME/CFS are more incapacitated than sufferers of congestive heart failure, multiple sclerosis, end-stage renal disease or type II diabetes mellitus, and only terminally ill cancer and stroke patients have a greater sickness impact profile (SIP). [6] "…a significant negative correlation was found between the number of defects and midcerebral uptake index in patients with chronic fatigue syndrome and AIDS dementia complex, but not in depressed patients or control subjects. CONCLUSION. These findings are consistent with the hypothesis that chronic fatigue syndrome may be due to a chronic viral encephalitis" [7] "The broader impact of the disease even in its milder forms can be extensive; people who are severely affected and/or with longstanding disease are profoundly compromised, and improvement of their care is an urgent challenge." [8] In view of these facts it doesn’t sound like there is much room left for a privilege of “lifestyle”, does it? That anyone ever suffering such a catastrophic collapse of health could go on to dismiss it as a dysfunctional “lifestyle” is surely the nadir of shamefulness. Severely affected patients have had their suffering compounded by this careless buying into fashionable glossy nonsense which performs well as psychosomatic medicine's PC face, but for the grim reality of severe sufferers' existence is grossly inappropriate and does nothing more than compound stigma, belittling, and the institutionalisation of blame. As to the internal logic of Mr Jameson's hypothesis, even that makes little sense. He cites lifestyle, yet rejects CBT/GET. He says "the illness could be psychosomatic", yet has on many occasions claimed to disagree with the Wessely/ Sharpe/ Chalder treatment hegemony. He talks about “facts” but can reference only his own book and dismisses the very popularist studies from the BMJ [10] et al that, if one were to overlook their grave methodological flaws, would see they actually go some way to agreeing with him, in their endless talk of lifestyle, predisposing and psychiatric factors. Mr Jameson dismisses alternative therapies as quackery yet fails to realise that his own self-imposed treatment and it's underpinning rationale is certainly not "mainstream". At least he has shown that this "unexplained" disease does in fact have explanations. ME/CFS is to at least some degree a relapse remitting disease. It can go into remission spontaneously for reasons not yet fully understood (a trait apparently not shared by somatisation). There is the distinct possibility that this is sometimes misattributed to some treatment or lifestyle change. Yet ME/CFS is an acutely environmentally sensitive entity and if someone is fortunate to enjoy the correct environment (support, social care, easing of financial burdens, good medical advice) early on then the chances of natural remission are going to be better. On the other hand there are misdiagnoses. With so little comprehension of what ME/CFS is here in the UK, ignorance of or ignoring of, weakly diluted criteria such as Dr Sharpe et al's Oxford criteria, with the absence of diagnostic testing, and with the psychiatrists' massively overestimated prevalence [9] which has confused CFS with CF (evident in some of the professionals' replies to this discussion) no one should be shocked or offended to hear that some people actually have another medical and/or psychiatric explanation for their symptoms. What is or should be shocking, is the exploitation of variant definitions and lax diagnosis by pseudoscientific researchers and their pet peer reviewers to create a rigged “evidence base“. [9, 10, 11] As long ago as 1991, Drs Lapp and Cheney noted that, "many patients with CFS are excluded from studies because they seem "too sick" to have CFS and are perceived as having something else. CFS cases are mixed in with non-cases. Inappropriate controls are sometimes used. Some investigators, aware or unaware of a bias, attract or include in their studies the very patients who best fit their view of CFS. This so-called selection bias can markedly affect the observations of a study." [11] (I hope Kelwyn D Williams is taking notes -- although he cedes to varying diagnostic criteria, he fails to observe the relevance of that in interpreting the data.) Surely most sufferers would be only too glad to discover they have something other than ME/CFS, where they would be only overjoyed to escape the denigration, stigma, discrimination, prejudice, confusion and hopelessness that "experts" propound -- not necessarily so honestly as Dr “Barrington” -- and have a treatable and "understood" condition. It would be in some small way recompense with doctors feeling free to utilise medicine to investigate, test and do all the things they are "advised" not to do within the current fad of psychiatric received wisdom in the NHS. With Mr Jameson's determination to reclassify ME/CFS as a psychosomatic disorder, I fail to comprehend why he is simultaneously so determined to cling to the ME/CFS nomenclature and all the baggage it now brings, especially since he is apparently “cured” now and so has little stake in it. But then with his enthusiasm for a psychiatric explanation, perhaps he feels the baggage actually suited his own illness. 1. Johnston, RR to Raine et al, General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ 2004; 328: 1354-1357 2. WHO International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Geneva, The Organisation, 1992 3. Minister for Health, Lord Warner, House of Lords Hansard, UK Parliament, 23 Mar 2004 (240323w02) 4. Komaroff et al, Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups. Am J Med. 1996 Sep;101(3)281-90. 5. Peterson et al, Health Outcome Study, in conjunction with Hennepin County Medical Center, Minneapolis, MN, 1990 6. Schweitzer R et al, Quality of Life in Chronic Fatigue Syndrome. Soc Sci Med 19954110 1367 1372 7. Schwartz et al, SPECT imaging of the brain comparison of findings in patients with chronic fatigue syndrome, AIDS dementia complex, and major unipolar depression. AJR Am J Roentgenol 1994 Apr;162(4)943-51 8. CMO for England & Wales’ WG Report on CFS/ME, Ch 3, Key Messages, DoH, 2002 9. Editorial by the Lancet staff, The Lancet, Volume 348, No. 9033, page 971 October 12, 1996 10. Goudsmit E, Chronic fatigue syndrome: bias in the BMJ [ http://freespace.virgin.net/david.axford/bmj-bias.htm ] 11. Cheney P, Lapp C, The Diagnosis of Chronic Fatigue Syndrome An Assertive Approach. The CFIDS Chronicle Physicians Forum. 1991; 13-19. Competing interests: None declared
chalk and cheese 13 June 2004
dougal jeffries, GP Isles of Scilly TR21 0NE Send response to journal: Re: chalk and cheese	The most remarkable and contentious statement in Raine et al.'s paper is this (regarding IBS and CFS): "symptoms, the outlook of patients, and responses to treatment are similar for both conditions". Can anyone imagine a similar avalanche of anguished and enraged rapid responses coming form sufferers of IBS? Do people with IBS lose careers and remain incapacitated for years on end? Are there simple symptomatic treatments for CFS analagous to smooth muscle relaxants for IBS? Is there any coherent explanation for the complex symptomatology of CFS to compare with the well-recognized link between anxiety and gastro-intestinal muscle contractions and disturbed peristalsis in IBS? If I were a CFS sufferer - and I thank Providence that I am not - I would feel more than a little irritated by the comparison. As for effective management strategies for CFS, it is abundantly clear that there is no consensus either among medical practitioners or among those living with the condition. As a GP, I hope I have the humility to acknowledge their suffering, to admit to the continuing lack of any clear scientific evidence for both aetiology and treatment, to maintain an interest in seeking such evidence, to avoid stereotyping my patients, and to continue to support and listen to them. Dougal Jeffries Competing interests: None declared
re: Medical correctness and evidence based medicine 14 June 2004
N Portman, Patient Tunbridge Wells, Kent Send response to journal: Re: re: Medical correctness and evidence based medicine	Jan Bryant and Angela Kennedy have listed several excellent reasons why Peter White's assertion that "the benefits of both cognitive behaviour therapy and graded exercise therapy considerably outweigh the risks in ambulant adult patients" should not be taken at face value. If I may, I would like to expand on a couple of the points they made. First of all I would like to comment on the lack of proper blinding inherent in these supposedly controlled studies. All of the CBT/GET studies I have come across have compared CBT or GET with a treatment the researchers presumably believed was ineffective such as flexibility exercises. The problem with this approach is that it is patently obvious to both patients, and perhaps even more significantly, the doctors treating them who is receiving the placebo and who is receiving the (supposed) active treatment. Dr White claims the validity of CBT and GET trials have been confirmed by four systematic reviews. I am frankly astonished that any reputable reviewer would confer any legitimacy on a small trial that was not properly blinded. What Peter White and his colleagues ought to be doing is comparing CBT or GET with another treatment that both patients and doctors genuinely believe might be effective. Sadly this is unlikely to happen as Dr White and his colleagues seem determined not to do any serious research into treatments that are not "psychosocial" in nature. There is also the issue as to whether or not the people being enrolled on these trials are truly representative of the ME patient population. The problems caused by the nebulous inclusion criteria, and the exclusion of the more severely affected sufferers, have already been well documented by Jane Bryant, Angela Kennedy and many others over the years. However, there are two other potential sources of bias inherent in the recruitment process. All of the CBT/GET trials I have come across have recruited patients from outpatient clinics. Now I would hazard a guess that most, if not all, of these clinics are run by psychiatrists promoting "psychosocial" treatments. I think it's reasonable to assume that GPs will tend to refer those fatigued patients they believe are suffering from psychiatric (or psychological) problems to psychiatrists, and those fatigued patients they believe are suffering from a physical illness to another type of medical specialist. It's also worth noting that many ME patients are deeply angry that the true physical nature of their illness is constantly denied (particularly by psychiatrists), and such patients are extremely unlikely to allow themselves to be referred to a psychiatric outpatient clinic. I sometimes wonder how many genuine ME sufferers are actually finding their way on to these trials. What Peter White and his colleagues ought to be doing is recruiting directly from GPs or the ME self-help organisations, but of course this would require more effort on their part. However, all of this is really beside the point. Let us for a moment take the best case scenario and assume hypothetically that CBT and GET can indeed help a subset of genuine ME sufferers to improve slightly. So what? Even if I made a slight improvement my life would still be utterly intolerable. I only live for the possibility, however remote, that someone may some day find a cure, or something reasonably close to it. I was shocked to learn recently that £8.5 million of government money allocated to "ME services" is to be spent on so called Centres of Excellence staffed mainly by psychiatrists peddling psychosocial treatments. This isn't a large sum of money in the first place, and it is utterly scandalous that it is being squandered on treatments that are at best expensive palliatives and at worst (in the case of GET) perhaps even harmful. It would be far better spending this money on basic research. Of course even if every single penny allocated to ME was spent on basic research there is no guarantee that the cause of the illness (yet alone a cure) would be found, and some doctors may regard using all the money in this way as an unreasonable gamble. However, that is surely a judgement that should be made by patients and not by a small clique of unrepresentative psychiatrists. I for one am certainly willing, indeed highly motivated, to take the gamble. I would urge Dr White and his colleagues to drop their obsession with psychosocial treatments and start doing some serious research into the underlying physical cause of ME. If they are unwilling to do this then I would urge them to do the honourable thing, bow out from this area of medicine gracefully, and make way for some new open-minded researchers with fresh ideas. Competing interests: None declared
How much more proof do you need? 14 June 2004
Erik R Johnson, n/a Incline Village 89450 Send response to journal: Re: How much more proof do you need?	Watching the debate between psychotheorists and CFS/ME sufferers is like stepping back in time and having a window seat on history that allows you to view the furor in the Flat Earth Society meetings as each new bit of Round Earth evidence is introduced. It is amazing to watch the fervor with which psychologizers defend a doomed concept. Every person who has experienced the reality of CFS/ME knows the debate is moot, the outcome is certain. Eratosthenes calculated the circumference of the Earth in 230 BC by measuring the shadows in a well in Syene during the summer solstice. Over 1700 years later some people were still wondering if Columbus was going to sail off the edge of a flat Earth. Some people can be convinced by a single piece of evidence that confirms a theory because the concept can have no other explanation. Others cling to obsolete theories by refusing to consider any evidence that endangers their beliefs and reshapes their world. As the pointless debate continues and more evidence accumulates, the question to psychotheorists is the same as it was for the Flat Earthers. "How much more proof do you need?" -Erik Johnson Competing interests: None declared
Re: chalk and cheese 14 June 2004
Peter Culdrose, Severe M.E. sufferer, previously television director SW1 Send response to journal: Re: Re: chalk and cheese	Sir, What a superb response from GP Dougal Jeffries. What a refreshing change. If only more GP's were like him. I would simply like to put his words to White, Wesley and co. in the hope that they may learn from him. "As a GP, I hope I have the humility to acknowledge their suffering, to admit to the continuing lack of any clear scientific evidence for both aetiology and treatment, to maintain an interest in seeking such evidence, to avoid stereotyping my patients, and to continue to support and listen to them." Peter Culdrose Severe ME sufferer, previously Television Director Competing interests: None declared
Raine et al, the BMJ and "non-disease" 14 June 2004
Veronica Gordon Smith, M.E. since childhood, now severe; former broadcaster & lecturer EH10 4RX Send response to journal: Re: Raine et al, the BMJ and "non-disease"	On 13.4.02 Richard Smith, editor of the BMJ, wrote a review of a "vote" undertaken on bmj.com, entitled: `In search of "non-disease"'. He wrote: "The BMJ recently ran a vote on bmj.com to identify the "top 10 non-diseases." Some critics thought it an absurd exercise, but our primary aim was to illustrate the slipperiness of the notion of disease. We wanted to prompt a debate on what is and what is not a disease and draw attention to the increasing tendency to classify people's problems as diseases." The top 10 included baldness, ageing, etc so the authors, unsatisfied, expanded the list to 100. Needless to say, into that top 100 came ME. Because it was from the BMJ it was reported seriously. It mutated in "The Observer" into an article headed "Why it's all in the mind", and worse in other papers. Did no one think of doing a survey of GP opinion before and after that cynical and mismanaged spoof "survey" to see what damage it did? And why is anyone surprised at the current findings of, and reaction to, Raine et al? The BMJ should acknowledge its responsibility in contributing to the damaging debate on ME/CFS. Veronica Gordon Smith Competing interests: None declared
Doctors please listen to your patients and treat them. 14 June 2004
Jean E Long, ME survivor unable to work PO4 9AA Send response to journal: Re: Doctors please listen to your patients and treat them.	Doctors have repeatedly been told that there is no need to investigate patients with ME so this often becomes translated into “investigate nothing”. Others, like myself, have been damaged by exercise programmes and medical procedures, carried out without due care and attention; the latter meant that I personally became even further disadvantaged both in terms of disability and in getting access to the treatments I needed. One major cause of my physical disability was not even picked up at a prestigious London hospital because the doctors there became so obsessed by the unsubstantiable claims made by one member of the group of psychiatrists who still insist they are the experts on this illness. I wish I could still write well, what happened on the ward I was in has all the material for a mind boggling black comedy; except that of course the consequences were far from amusing. There is much that can be done to help patients symptomatically as A Chaudhuri, Senior Lecturer in Clinical Neurosciences, has pointed out but many do not even receive even that. Patients with ME frequently have other health issues ignored, or left too long, before investigations and treatments are instigated. The situation for most ME patients in the UK is dire, we are now lagging behind other countries, despite having a few good researchers and doctors who have a good understanding of the ramifications of this illness. On the other hand we have a small group of health professionals who have been allowed to assert too much influence with their own unscientific theories. As they progressively receive ever increasing financial rewards, funding, and national recognition, patients with ME are left feeling they are being used as prawns in this whole sorry business. Competing interests: None declared
GPs are powerless without better models 15 June 2004
Chris Burton, GP & Research Training Fellow Sanquhar Health Centre, DG4 6BT Send response to journal: Re: GPs are powerless without better models	Raine and colleagues (1) concentrate on GPs beliefs and prejudices but almost all of their quotations from GPs regarding Chronic Fatigue Syndrome suggest a sense of powerlessness to help (2). I suspect this stems from the fact that in order to make sense of our patients’ experience (3) we need valid, and sharable, explanatory models (4). GPs have recognised that the prevailing discourses of patho- physiology, somatisation (5), and the biopsychosocial model (3) cannot adequately frame these problems, so it is not surprising that they remain sceptical about interventions based on any one of these. Nor is it surprising that, faced with the absence of clear objective models, they fall back on personal or societal beliefs drawn from subjective experience. The authors conclude by advocating engagement with a complex multifactorial model of illness. Unfortunately the evidence to date from epidemiology, laboratory studies and treatment trials is not enough to claim that such a model exists in robust enough form for general use. When one does, I am sure we will use it. (1) Raine R, Carter S, Sensky T, Black N. General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ 2004 328: 1354-1357 (2) Wileman L, May C, Chew-Graham CA. Medically unexplained symptoms and the problem of power in the primary care consultation: a qualitative study Fam Pract 2002;19:178-182 (3) Butler CC, Evans M, Greaves D, Simpson S. Medically Unexplained Symptoms: the biopsychosocial model found wanting. J R Soc Med 2004;97:219 -222 (4) Peter Salmon, Sarah Peters, and Ian Stanley Patients' perceptions of medical explanations for somatisation disorders: qualitative analysis BMJ, Feb 1999; 318: 372 - 376. (5) Sharpe M, Mayou R. Somatoform disorders: a help or a hindrance to good patient care. Br J Psych 2004;184:465-467 Competing interests: Currently researching symptoms including chronic fatigue
Bumblebees Can't Fly! 16 June 2004
Erik R Johnson, n/a Incline Village NV Send response to journal: Re: Bumblebees Can't Fly!	Do you remember your response when you first heard that "aerodynamicists have mathematically proven that Bumblebees Can't Fly"? Ridiculous! Of course they can fly! This is surely proof that scientists are insane and that mathematicians are so far removed from reality that empirical experience plays no part in their calculations. But how could such an assertion ever have been made? Well, the model for application of aerodynamic principles was based on the lift generated by the air moving over a wing in the manner of a bird. Analysis of this type of airflow over the small flat wing of a bee showed that it did not generate sufficient aerodynamic "lift" to support a bee and that it should not have been able to fly. This touched off a half century long debate between scientists who could not back down from their evidence and "people with common sense" who saw bees flying around with perfect facility. The debate has finally been resolved with the discovery and identification of a special kind of "vortex lift" that is created by the vertical flapping motion of a bee in which an upward swirl of accelerated air is exploited to enable a bee to accomplish a feat that was contradicted by the existing model of aerodynamic lift. http://plus.maths.org/issue17/news/bumble/ The emergence of of CFS/ME has created a similar need to develope a new model of a phenomenon that is "medically unexplained". The sufferers know that their experience cannot be contradicted and call upon doctors to develope the scientific tools necessary to explain the apparent conflict between their observations and the current model of illness. The Bumblebee paradox is a striking example of how science and observations can collide and create decades of debate when the rational means to resolving the issue is for all parties to agree upon the need to explain the discrepancy between the opposing views rather than spend a half century trying to jam a square peg into a round hole by utilizing inappropriate models of illness. Let us learn from history and not repeat it. -Erik Johnson Competing interests: None declared
Interesting coupling - IBS and CFS 16 June 2004
John P Heptonstall, Director of the Morley Acupuncture Clinic Leeds LS27 8EG Send response to journal: Re: Interesting coupling - IBS and CFS	Sir I was interested in the coupling of IBS and CFS/ME/PVS as I have always tended to find these 'syndromes' together - not distinctly separate. Most of my recovering ME/CFS patients seem to pass through an IBS state on their way to recovery; older patients may be left with a longer period, even chronic, IBS state whilst younger patients seem to recover more completely without an IBS phase. I see IBS patients whose debility, for short periods, could equate to the more chronic debilitation seen with many CFS/ME patients (including symptoms associated more with ME/CFS than IBS), and some whose debility is more limited and revolves around general but less debilitating fatigue during IBS phases of a few days to a few weeks. This has led me to believe that 'leaky gut syndrome' is a common factor in both and IBS may be a limited aspect of what could become a more debilitating and chronic fatigue state with attendant symptoms not unlike post-encephalitis syndrome. From a Traditional Chinese Medicine (TCM) perspective I find 'small intestinal' implications common in all these conditions suggesting entero- viral (eg. Coxsackie, Epstein Barr), vaccine-viral (eg. Hepatitis B, Anti- tetanus), and inappropriate antibiotic use (eg Septrin and others) likely causes and this is borne out by various studies. I fail to understand how any physician could still consider accusations that ME/CFS sufferers are somatising illness or are suffering from psychological or psychiatric impairment as in any way valid. Chronic debility does affect the psyche and attendant 'psychology' is expected in anyone subjected to long term illness, but in this case the causation is mainly exogenous, in many cases iatrogenic, and the sooner physicians open their eyes to that reality the sooner sufferers will be able to focus their energies on recovery rather than defending their situation. Regards John H. Competing interests: Practitioner of TCM - acupuncture & moxibustion
Re: GPs are powerless without better models 16 June 2004
Angela P. Kennedy, Social Science Lecturer IG8 Send response to journal: Re: Re: GPs are powerless without better models	Chris Burton’s honest response in these pages was extremely interesting. Dr Burton finds that there are problems in the bio psycho- social approach to ‘Chronic Fatigue Syndrome’, and that a ‘multifactorial model’ of illness with regard to ‘CFS’ is not ‘yet’ robust enough. I think that Dr Burton’s discussion illustrates a number of points: 1. Despite many years of international biomedical research which has yielded some explanations as to the organic nature of ME/CFS, the WHO -ICD -10 classification of the disease as neurological, the production of the Canada Definition and Protocols which shows “somatization disorder” to be as low as 5 % in the ME/CFS population, (7) doctors, in Britain at least, are being fed the misinformation that ME/CFS is primarily a psychiatric illness. This misinformation is coming from somewhere. Indeed, as recently as this year and highlighted here in previous Rapid Responses, a WHO Collaborating Centre had been promulgating such misinformation, specifically around the ICD-10 classification. Such misinformation has also been promulgated in other publications that might be used by GPs and other health professionals. 2. Doctors are not being encouraged to do specific biophysical investigations that may uncover the abnormalities present in ME/CFS sufferers. In neglecting to do so, physical abnormalities remain undetected, and the notion of ’medically unexplained’ illness becomes a self-fulfilling prophecy. 3. Patients will not ‘buy into’ an explanation for their serious physical problems that is logically flawed, such as the ‘somatization’ model. At the risk of flippancy, the somatization explanation for ME/CFS seems in many ways like a “demonic possession” explanation for symptoms: it cannot be verified, there are elements of moral judgement within it, and it does depend on the subjective beliefs of he or she making the diagnosis, which will be subject to complex cultural assumptions. To expect patients to accept without question such explanations is actually quite unfair, and unrealistic. This may be a major reason why doctors get such a sceptical response from patients when delivering the ‘psychosomatic’ explanation. Often the explanations of ‘psychosomatic’, somatizing’ or other terms used to describe biophysical health problems becomes a cruel distortion of a holistic approach (1) , and, specifically, nearly always accompanied by a belief that the sufferer of an illness diagnosed as such is the author of her own illness, (2) even if, in good old Freudian terminology, ‘unconsciously’ so. Many doctors do not seem to be aware of the theoretical and epistemological problems associated with the idea of ‘hysteria’ and ‘somatization’ (terms often used interchangeably with other terms such as “psychosomatic”, or “psychogenic”) of which there are many, but my guess is that at least some of them will have exercised their critical faculties and found the ’bio-psychosocial model wanting’ (3) So, as I understand it, GP’s in particular, across the land, are being told, incorrectly, that ME/CFS is a ‘psychosomatic’ illness caused by behavioural problems, by key figures in British ME/CFS practice, a powerful psychiatric lobby who have persistently socially constructed ME/CFS sufferers as mentally ill and also socially deviant, (4, 5) rather than the seriously organically ill and disabled people they actually are. (6) Possibly against their own clinical judgements and critical faculties, many GP’s nevertheless attempt to convince patients presenting with symptoms that the illness is ‘psychosomatic’. Patients, exercising their own critical faculties, often inevitably find such explanations inadequate and possibly downright irrational. This presents a major conflict for both patients and doctors. The situation can then become extremely tense at best, and lead to frequent breakdowns in the patient- doctor relationship. 4. Doctors need a sensible model of care for ME/CFS patients, a conceptual framework that allows them to plan a model of care with their patients, that will help them address the underlying seriously biomedical problems that CAN be addressed, even if the full aetiology of ME/CFS is still uncertain, provide the support needed to help sufferers cope with a serious illness such as financial and psycho-social (NOT a CBT approach that aims to change the sufferer’s belief that they are ill, which many current CBT programmes appear to be doing), and help to prevent further disability and, where possible, decrease levels of disability. The Canada Case Definition and Treatment Protocols provide just such an up-to-date framework. (7) I would recommend, if I may, to Dr Burton, and indeed, any doctor caring for ME/CFS sufferers, that he reads these guidelines, as they provide a model of care that doctors can use. He may already have done so. He can judge for himself whether they seem robust enough, but the important thing is that he would be engaging with them. At present, key players in British psychiatric approaches to ME/CFS appear to be ignoring them. This is possibly because many of their own psychiatric assumptions about ME/CFS are critically analysed in this document, and found wanting. The “bio- psychosocial” approach to ME/CFS, as it currently stands, has been causing enormous problems for GPs and other doctors presented with ME/CFS patients: but the profound devastation caused to ME/CFS suffers by the approach has been unconscionable. A critical appraisal of this approach is now due. REFERENCES 1.Kennedy, A. (2004) “The distortion of holistic approaches to health care in ME.doc”: http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/ 2. McWhinney, I.R. Epstein, R.M. Freeman, T.R. “Rethinking Somatization” January, 1997. http://www.uwo.ca/fammed/ian/somatizationmain.htm 3. Butler CC, Evans M, Greaves D, Simpson S. “Medically Unexplained Symptoms: the biopsychosocial model found wanting.” J R Soc Med 2004;97:219 -222 4. Kennedy, A. (2004) “The Doctors Say Psychosomatic, What Do They Mean?”: http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/ 5 Williams, M. “Denigration by Design: Update: 1996 - 1999: (2000). http://www.25megroup.org/denigration%20by%20design/denigration%201.htm 6. Marshall, E.P., Williams, M. Hooper, M. “What is ME? What is CFS? Information for Clinicians and Lawyers”, December 2001. http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm 7. Carruthers et al (2003) “ Myalgic Encephalomyelitis/chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” Journal of Chronic Fatigue Syndrome, VO. 11 (1) 2003. http://www.theoneclickgroup.co.uk/documents/ME-CFS_res/ Competing interests: Carer, Social Science Lecturer and Researcher, Director of the One Click Group
The emperor's new clothes 18 June 2004
David W Jameson, former patient Belfast, BT4 Send response to journal: Re: The emperor's new clothes	Sir, While Mr Culdrose and Mr Johnson accuse people of ignoring the research, they themselves are just as guilty of this, by ignoring the patients who have recovered due to what might be called psycho-social treatments and relegating them to some illness other than ME without actually bothering to check the facts. If they did look at the reports of these patients they would see that the symptoms and diagnoses of these patients are indistinguishable from those patients who have not recovered. Many of these patients were severely affected and some bed-bound, and yet they managed to recover through a change of lifestyle (1). While I am open to the idea that there are two different illnesses here, if there are then it is impossible to distinguish them from symptoms alone, and it is dangerous and unwise to steer patients away from such treatments simply because one cannot comprehend how such treatments could cure a "physical" illness such as ME (even though they can). It is also interesting that Mr Heptonstall is so against any psychological explanation for the illness, even though his own field of medicine (acupuncture) is almost certainly entirely based on the placebo effect. The largest-ever clinical trial into the effectiveness of acupuncture is underway, and leaked preliminary reports show that it is no better than placebo (2). Perhaps if Mr Heptonstall and other alternative practitioners were more open-minded to the way their "treatments" worked, they would actually be able to come up with truly effective therapies for functional illnesses that work on all patients. (1) http://www.mind-body-health.net/cfs_recovery.html (2) http://www.guardian.co.uk/health/story/0,3605,1170061,00.html Competing interests: None declared
Professor Wessely and Dr White's views 18 June 2004
Erik R Johnson, n/a Incline Village NV 89450, Prof. Wessely - Dr Peter White Send response to journal: Re: Professor Wessely and Dr White's views	Professor Wessely and Dr Peter White were kind enough to send me messages of clarification on their views. "Dear Mr. Johnson People only need to read my papers to know that I do not think CFS/ME is primarily psychological." Dr Peter D White Reader in Psychological Medicine Barts and the London Queen Mary School of Medicine and Dentistry, St Bartholomew's Hospital, London EC1A 7BE, UK Message from Professor Wessely: "I agree that excessive exercise is counter productive, and that activity needs to be carefully managed to avoid symptom exacerbations you mention inflammatory changes - whilst there is little evidence of inflammation in the usual sense of the word, there is evidence of immune activation in CFS" "I am afraid that contrary to the view that our research group is exclusively concerned with promoting psychological research on CFS, we take a broad view." "I hope things improve for you one day" Professor Simon Wessely Subject: High levels of type 2 cytokine-producing cells in chronic fatigue syndrome Both sections as posted by Fred Springfield to the Co-Cure list: High levels of type 2 cytokine-producing cells in chronic fatigue syndrome. Journal: Clin Exp Immunol. 2004 Feb; 135(2): 294-302. Authors: Skowera A, Cleare A, Blair D, Bevis L, Wessely SC, Peakman M. Affiliations: Departments of Immunology and Psychological Medicine, Guy's, King's & St Thomas's School of Medicine, King's College London, London, UK. NLM Citation: PMID: 14738459 The aetiology of chronic fatigue syndrome (CFS) is not known. However, it has been suggested that CFS may be associated with underlying immune activation resulting in a Th2-type response. We measured intracellular production of interferon (IFN)-gamma and interleukin (IL)-2; type 1 cytokines), IL-4 (type 2) and IL-10 (regulatory) by both polyclonally stimulated and non-stimulated CD4 and CD8 lymphocytes from patients with CFS and control subjects by flow cytometry. After polyclonal activation we found evidence of a significant bias towards Th2- and Tc2-type immune responses in CFS compared to controls. In contrast, levels of IFN-gamma, IL-2 and IL-10-producing cells were similar in both study groups. Non-stimulated cultures revealed significantly higher levels of T cells producing IFN-gamma or IL-4 in CFS patients. Concluding, we show evidence for an effector memory cell bias towards type 2 responsiveness in patients with CFS, as well as ongoing type 0 immune activation in unstimulated cultures of peripheral blood cells. __________________________________________________________ I would like to thank both Professor Wessely and Dr. White for their responses and clarification of their views that CFS is not primarily a psychological illness. This implies that GET aimed at "Deconditioning" and CBT to correct illness behaviors may be therapies that are not directly concerned with addressing the primary dysregulation that underlies the physiological exercise intolerance and psychological consequences from having the illness. Since Professor Wessely and Dr White share the belief that CFS/ME is not primarily a psychological illness then I trust that research and therapy will be directed at the primary physiological origins of CFS/ME in accordance with these views. Again, I wish to thank Professor Wessely and Dr White for their responses to my concerns. -Erik Johnson Competing interests: None declared
Re: The emperor's new clothes 19 June 2004
John P Heptonstall, Director of The Morley Acupuncture Clinic and Complementary Therapy Centre Leeds LS27 8EG Send response to journal: Re: Re: The emperor's new clothes	Sir David Jameson makes a number of sweeping statements that are at least wrong, at most crass, and show little knowledge about the medicine I and hundreds of thousands of other practioners practice worldwide. His concept of acupuncture as only placebo would be of little consequence or interest in China where it has been used for millennia, and 'scientifically' researched for decades, such that we are left in no doubt that placebo is as much a part of TCM modalities as it is western medical modalities. The Guardian interim report on the study he cites was easily discredited and, were this the forum for that debate I would update David on it but clearly we are discussing ME/CFS. Nor am I 'so against any psychological explanation for the illness' although my own experience tends to have me believe that the 'psychology' is part of the illness (as part of any illness - mind, body, spirit being a continuum)not the cause. I am happy to be proved wrong. Most patients who have improved and recovered with my interventions have shown ranges of physical and psychological symptoms we would expect in Traditional Chinese Medicine and they disappear as patients improve with a combination of 'acupuncture & moxibustion', dietary and lifestyle - especially dietary - and graded exercise advice at appropriate periods. Our therapies generally do 'work on all patients' (including animals which tends to discount placebo excuses made by cynics like David) as they are individualised. TCM therapies, such as acupuncture & moxibustion, are analogous to the manipulation of electronic circuitry - the human body 'bioelectric and biochemical' is manipulated through ages old technqiues in the same way an electronics engineer manipulates and tunes circuitry; in our case human 'cicuitry' has a finite life but also has an ability to reproduce itself and all these aspects can be tuned. Hence everyone can be retuned and circuitry enhanced through appropriate treatments by TCM specialists working with the TCM model. How effective a treatment is therefore depends on the state of the circuitry, its capability to retune and reproduce, and external factors affecting it such as lifestyle, relationships, environment etc. all of which according to TCM are important for assessment as they may have pathogenic effects on the 'human circuit'. Unlike a western drug pill, we do not expect the same result for most people as long as they 'keep taking the medicine daily'; we expect each person to react individually to treatments at a pace their state requires, the more chronic take longer to respond, the more acute more quickly. This reality is often mistaken as 'some not responding' and 'others responding' as the western expectation is that of being prescribed a 'pill' that works by tomorrow or it's no good (despite most pills requiring daily administration and being unlikely to cure and withdrawal causing relapse). If David reads around the subject, and hesitates before believing media-driven sensationalism rather than objective in-depth analysis from qualified and experienced persons, he might not write-off therapies that have stood the tests of time and are used by people whose pragmatic nature is second to none. With ME/CFS I may typically find that my treatments work at varying rates with various persons for whom I have to try assess the external and internal influences on the patient with the disorder and advise towards changes TCM suggests are important (eg. reduced computer use, reduced chemical exposure, changes in diet, reduced types of exercise and increased types, alterations in work or play scehdules etc. as treatments progress and symptoms subside). The acupuncture & moxibustion provides the stimulant that adjusts body mechanisms towards healing, the advice helps the patient adjust daily activities and pathogenic stressors to minmise their impact during healing. Psychology is always an important part of the human condition and this varies per patient type, time and life experience; it usually 'improves' with proper healing and ironically is often, as I tell all my patients, the last thing to heal as one got into the habit of focussing on ME/CFS first thing every morning. With healing it then becomes - like everyone who never suffered from ME/CFS - one of the last things one thinks about first thing in the morning. It remained because of conditioning, months or years of debility made it a condition of waking and considering how the day might go. Regards John H. Competing interests: Traditional Chinese Medicine Practitioner - acupuncture & moxibustion
Re: Professor Wessely and Dr White's views 19 June 2004
Douglas T Fraser, ex-violinist London W6 Send response to journal: Re: Re: Professor Wessely and Dr White's views	Editor- Dr White stated (18th June) - "People only need to read my papers to know that I do not think CFS/ME is primarily psychological." In "Physical or mental? A perspective on chronic fatigue syndrome" (1) Richard Sykes "..... examines the question of whether chronic fatigue syndrome (CFS), often known as myalgic encephalomyelitis (ME), should be classified as a physical or mental illness. Medically unexplained somatic syndromes are difficult to classify as either physical or mental illnesses. I will take CFS as an example (for a recent review of CFS see Pinching, 2000). The problem is that many patients experience CFS as a physical illness – they often say that they had something like bad influenza or a viral attack from which they have never properly recovered. Komaroff (2000) reviews the biology of CFS, citing evidence of biological abnormalities of the central nervous system and the immune system. However, medical scientists have not yet been able to establish an undisputed physical basis for the continuing symptoms and some people therefore conclude that the illness must be a mental one, caused by mental or psychological problems and hence it should be classified as a mental illness. I will argue that, even taking a sympathetic stance on psychological causation, there are no good grounds for saying that CFS is generally due to psychological problems. It should therefore not be classified as a mental illness" Included in a response (2) to Sykes, Dr. Peter White states: "Sykes is correct in pointing out that many of the symptoms of CFS are somatic. These include a sensation of physical fatigue or exhaustion, weakness, heaviness in the limbs, muscle and joint pain, headache and even transient sore throat and tender lymph nodes (Fukuda et al, 1994; Wessely et al, 1998). However, a conversion disorder can similarly cause entirely physical sensations and the corollary is that a frontal brain tumour can present with wholly ‘psychological’ symptoms and signs. So, the presence of physical symptoms proves nothing. We then turn to aetiology. Certain viruses have been shown to trigger CFS (White et al, 2001), but there is no replicated evidence of a persistent viral infection (Wessely et al, 1998). Immunological findings are inconsistent and have no established relationship with clinical findings (Peakman et al, 1997). A down-regulated hypothalamic–pituitary–adrenal axis is found in most studies (Cleare et al, 2001), but this could be the consequence of prolonged inactivity, rather than a primary event (White, 2000). The same finding is also evident in several psychiatric disorders (Wessely et al, 1998). Physical deconditioning is a reasonably reliable finding (Fulcher & White, 2000; White et al, 2001), but it would be expected to be due to the inactivity associated with CFS (White, 2000). The most consistent findings regarding the aetiology of CFS are ‘psychosocial’ (Wessely et al, 1998). These include higher prevalence rates of both current and past mood disorders, compared with other chronic medical disorders (Wessely et al, 1998). Somatic illness perceptions and consequent avoidant behaviour are equally established findings (Deale et al, 1998; Vercoulen et al, 1998). ‘Psychosocial’ factors predict slower recovery and are associated with greater disability (Wessely et al, 1998). The quotation marks around the word ‘psychosocial’ are an important reminder of the need for a deeper understanding of how biological factors are determined by, and themselves determine, psychosocial phenomena. Sykes’s suggestion that either a psychiatric diagnosis or a psychological problem can be considered as an additional diagnosis to CFS misses this point and bypasses the possibility that such factors may be central to fatigue" Dr White concludes : "The most effective treatments of CFS are based on an integrated, biopsychosocial understanding of the illness. To regard CFS as a physical disease would be as great an error as to regard it as a psychological illness" In response (3), Richard Sykes points out: "As regards the classification of CFS/ME, neither Kendell nor White addresses the crucial question that is posed by my paper. This is, ‘Given that currently all illnesses are classified as physical or as mental ones, how should CFS/ME be classified?’ Although criticising my view that, in this situation, CFS/ME should be classified as a physical illness, neither of them is prepared to advocate the only alternative, that it should be classified as a mental illness. White, for example, says that ‘to regard CFS as a physical disease would be as great an error as to regard it as a psychological illness’. In failing to address this crucial question, they have failed to address the situation faced by patients with CFS/ME whose illness will be classified in the real situations in which they are placed. White states that ‘the most consistent findings regarding the aetiology of CFS are "psychosocial"’. But both the findings and their significance are strongly debated. In reality, research findings give no clear answers as to how CFS/ME should be classified" Richard Sykes goes on to point out: "As regards the distinction between physical and mental illness, some psychiatrists today would have us believe that any distinction between body and mind, and with it any distinction between mental and physical factors, is just a relic of Cartesian dualism and is incompatible with a modern biopsychosocial model. But this, as Fulford forcibly points out, is ‘plainly nonsense. The "biopsycho-" part of the model directly depends on the body/mind distinction’. The reality is that the distinction between mind and body, between mental and physical factors, is a fundamental one which has not yet been replaced. The difficulties in drawing the distinction precisely cannot be disposed of simply by declaring the distinction out of date and ignoring the difficulties. Final comments The misperception of CFS/ME as a mental illness or as generally due to psychological problems, has led to much mistreatment of patients in the National Health Service and to much unnecessary suffering. This is well documented in the recent Government-commissioned report (Department of Health, 2002). At Westcare UK, we have specialised in providing psychological help to patients with CFS/ME for the past 13 years. In our view, in the current situation, CFS/ME is generally best classified as a physical illness, which like other physical illnesses has psychological and social dimensions (Sykes & Campion, 2002a,b). This view is supported by a large majority of patients. Is it now time to take this shared perspective seriously? More generally, confusion about basic concepts associated with illnesses that are currently called ‘mental’ illnesses creates unnecessary problems. The task of finding and agreeing a clear conceptual structure within which to describe and classify these illnesses is both important and urgent. My hope is that this task will be undertaken soon in an open, collaborative and cooperative way, with contributors from many fields. Linguistic philosophy, as Fulford (1990) has demonstrated, could have a valuable contribution to make" The following information contained within "THE PACE TRIAL IDENTIFIER" (4) clearly infers that White, Wessely, Sharpe et al believe in ME/CFS as primarily psychological, leading to deconditioning : "The chronic fatigue syndrome (CFS) is a condition characterised by chronic disabling fatigue and other symptoms, which is not associated with either an identifiable disease process or a major psychiatric illness.1-3" "CBT will be based on the illness model of fear avoidance, used in the three positive trials of CBT.15,17,18 There are three essential elements: (a) Assessment of illness beliefs and coping strategies, (b) Structuring of daily rest, sleep and activity, with a graduated return to normal activity, (c) Challenging of unhelpful beliefs about symptoms and activity (see appendices 2 & 6). GET will be based on the illness model of both deconditioning and exercise avoidance, used in the previous trials.19,20,22 Therapy involves an assessment of physical capacity, negotiation of an individually designed home aerobic exercise programme with set target heart rates and times, and sessional feedback with mutual planning of the next fortnight's home exercise programme" "Inclusion criteria: Subjects will be required to meet operationalised Oxford criteria for CFS.2 This means 6 months or more of medically unexplained, severe, disabling fatigue affecting physical and mental functions" "The trial will be run by the trial co-ordinator who will be based at Barts and the London , with the principal investigator (PI), and alongside two of the six clinical centres. He/she will liaise regularly with staff at the Clinical Trials Unit (CTU) who themselves will be primarily responsible for randomisation and database design and management (overseen by the centre statistician Dr Tony Johnson), directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU" "Drs. Peter White (PW), Michael Sharpe (MS) and Trudie Chalder (TC) will be centre leaders. PW will be the co-trainer and co-supervisor of GET (with Ms Lucy Darbishire) and will supervise the trial coordinator. MS and TC will oversee training and supervision of CBT (with Mr Vincent Deary). TC will oversee training and co-supervise APT (with Dr Diane Cox). PW, MS, and TC will oversee treatment adherence" 1. Fukuda K et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994; 121: 953-959. 2. Sharpe MC, et al. A report – chronic fatigue syndrome. JR Soc Med 1991; 84: 118-121. 3. Wessely SC et al. Chronic fatigue and its syndromes. Oxford, Oxford University Press, 1998. 15. Priiis JB et al. Cognitive behaviour therapy for chronic fatigue syndrome. Lancet 2001; 357: 841-7. 16. Ridsdale L et al. Chronic fatigue in general practice: is counselling as good as cognitive behaviour therapy? A UK randomised trial. Br J Gen Pract 2001; 51: 19-24. 17. Sharpe M et al. Cognitive behaviour therapy for the chronic fatigue syndrome: a randomised controlled trial. 5M/1996; 312: 22-26. 18. Deale A et al. Cognitive behavior therapy for chronic fatigue syndrome: a randomized controlled trial. Am J Psychiatry 1997; 154: 408- 414. 19. Fulcher KY & White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ 1997; 314: 1647-52. 20. Wearden A et al. A randomised, double-blind, placebo controlled treatment trial of fluoxetine and a graded exercise programme for chronic fatigue syndrome. Br J Psychiatry 1998; 172: 485-90. 21. Lloyd A et al. Immunologic and psychologic therapy for patients with chronic fatigue syndrome: A double-blind, placebo-controlled trial. Am J Med 1993; 94: 197-203. 22. Powell P et al. Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome. 5M/2001; 322: 387-92. Included in The Canadian Guidelines- "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" by Carruthers et al (5), the following commentary and critique of these views is offered: "Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET) Two hypotheses have been presented as underlying the CBT model of chronic fatigue syndrome (105). The first hypothesis "assumes that the pathophysiology of CFS is largely irreversible, but considers that a fine- tuning of the patient's understanding and coping behavior may achieve some improvement in his or her quality of life." The second hypothesis is based on the premise that the patient's impairments are learned due to wrong thinking, and "considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behavior, and emotional processes. According to this model, CBT should not only improve the quality of the patient's life, but could be potentially curative" (105). Some proponents suggest that "ideally general practitioners should diagnose CFS and refer patients to a psychotherapist for CBT without detours to medical specialists as in other functional somatic syndromes" (106,107). The first hypothesis seems reasonable within the multi causal biopsychosocial model of disease and illness, however a cure may be found. But there is much that is objectionable in the very value-laden second hypothesis, with its implied primary causal role of cognitive, behavioral and emotional processes in the genesis of ME/CFS. This hypothesis is far from being confirmed, either on the basis of research findings or from its empirical results. Nevertheless, the assumption of its truth by some has been used to influence attitudes and decisions within the medical community and the general cultural and social milieu of ME/CFS. To ignore the demonstrated biological pathology of this illness, to disregard the patient's autonomy and experience and tell them to ignore their symptoms, all too often leads to blaming patients for their illness and withholding medical support and treatment. It is unlikely that the CBT and GET studies that were included in the recent review of treatments (108) dealt with comparable homogeneous groups since different inclusion and exclusion criteria were used in selecting the test patients and control groups. For example, in the Prins et al. (106) CBT study on ME/CFS, patients had to meet the CDC criteria "with the exception of the criterion requiring four of eight additional symptoms to be present." If the sole CDC criterion that patients had to meet was prolonged fatigue, is not this study on chronic fatigue, rather than ME/CFS? In a study by Fulcher and White (109), comparing graded aerobic exercise to flexibility therapy, ME/CFS patients who had an appreciable sleep disturbance were excluded because of the effect that poor sleep has on fatigue. This is puzzling as in a study of symptom prevalence and severity by De Becker et al. (45), 94.8% of 951 patients meeting the Holmes criteria, and 91.9% of 1,578 patients meeting the Fukuda criteria, reported sleep disturbance with an average severity of 2.5 and 2.4, respectively, out of 3. When sleep disturbance is such an integral part of ME/CFS, do the findings in the Fulcher and White study (109) apply to ME/CFS? A systematic review of prognosis studies show that the less stringent the clinical criteria, the better the prognosis (74). In two of the studies reviewed (110,37), 22% and 26% of patients with chronic fatigue reported recovery, respectively, whereas none and 6% of the ME/CFS patients recovered from fatigue. Therefore, care must be taken not to classify patients experiencing chronic fatigue as ME/CFS patients unless they meet all the criteria for ME/CFS, as the outcomes for these two patient groups are substantially different. It is interesting to note that in the treatment review (108), all the CBT and GET studies that indicated improvement used the less restrictive Oxford criteria with the exception of the Prins study (106) that used the CDC criteria for prolonged fatigue but eliminated the other CDC criteria. All studies excluded ME/CFS patients who were too ill to regularly attend treatment sessions. The complexity of CBT studies, their varied inclusion and exclusion criteria, the very limited portions that can be properly blinded, and the subjective means used for most evaluations, puts in question the validity of their results. In addition, the numerous variables between the CBT studies, the CBTs and control programs, the different comparison therapies, and the varied frequency and duration of therapy, make it very challenging to determine which parts are responsible for any perceived improvement. Are any effects due to the shift in cognitive beliefs, the exercise involved, the amount and quality of the attention and counselling, the discontinuance of other medical therapies during the test period, etc.? Thus the Powell et al. study (111) found GET alone to be as effective as CBT, and the Risdale et al. study (112) found CBT to be no more effective than counseling. The GETs included in the review (108) generally involved graded aerobic activities with variable amounts of supervision. These three studies (109,111,113) showed positive effects but the results were modest. Although the more carefully supervised study of Fulcher and White (109) found that 55% of the patients improved over a three month period compared to 27% of patients given flexibility and relaxation exercises, the most common result in both groups was "feeling a little better." Since "graded aerobic exercises programs can help reduce incapacity and symptoms in many chronic and painful conditions" (109), one wonders about the specificity of any effects in ME/CFS patients. Do study results represent a true reflection of the ME/CFS population when there is a high dropout rate? The Prins et al. study (106) on CBT reported significant improvement in fatigue severity in 35% (20 of 58) of the patients. However, these figures do not reflect that 26% (99 of 377) of the patients who were eligible for the study "refused to take part," and of the 93 patients who were assigned to CBT, 41% (38) did not complete the trial. In a British study (100), 1,214 of 2,338 patients had tried graded exercise. Of these 417 found it to be helpful, 197 reported no change and 610 (50%) indicated that it made their condition worse. This was the highest negative rating of any of the pharmacological, non- pharmacological and alternate approaches of management covered in the questionnaire and may help explain the high drop out rates noted in some of these programs. The question arises whether a formal CBT or GET program adds anything to what is available in the ordinary medical setting. A well informed physician empowers the patient by respecting their experiences, counsels the patients in coping strategies, and helps them achieve optimal exercise and activity levels within their limits in a common sense, non-ideological manner, which is not tied to deadlines or other hidden agenda. Physicians must take as much care in prescribing appropriate exercise as in prescribing medications to ME/CFS patients (100). Attending physicians should only approve of exercise programs in which the patient's autonomy is respected, appropriate pacing is encouraged, fluctuations in severity of symptoms are taken into account, and adequate rest periods are incorporated. Patients should be monitored frequently but unobtrusively for signs of relapse" 37. Bates DW, Schmitt W, Buchwald D, Ware NC, Lee J, Thoyer E, Kornish RJ, Komaroff AL. Prevalence of fatigue and Chronic Fatigue Syndrome in a primary care practice, Arch of Intern Med 1993 Dec;153:2759- 2765. 38. Lloyd AR, Hickie I, Boughton CR, Spencer O, Wakefield D. Prevalence of chronic fatigue syndrome in an Australian population. Med. J. Aust. 1990;153:522-528. 45. De Becker P, McGregor N, De Meirleir K. A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome. J Intern Med 2001;250:234-240. 74. Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue and chronic fatigue syndromes: a systematic review. QJ Med 1997;90:223- 233. 100. Sheperd C. Pacing and exercise in chronic fatigue syndrome. Physiother 2001 Aug;87(8):395-396. 101. White PD, Naish V. Graded exercise therapy for chronic fatigue syndrome. Physiother 2001;87:285-288. 102. Jones KD, Clark SR. Individualizing the exercise prescription for persons with fibromyalgia. Rheum Dis Clin of NA 2002;28:1-18. 103. DeBecker P, Roeykens J, Reynders M, McGregor N, De Meirleir K. Exercise capacity in chronic fatigue syndrome. Arch of Intern Med 2000, Nov 27;160(21): 3270-3277. 104. Clapp LL, Richardson MT, Smith JF, Wang M, Clapp AJ, Pieroni RE. Acute effects of thirty minutes of light-intensity, intermittent exercise on patients with chronic fatigue syndrome. Phys Ther 1999 Aug;79:749-56. 105. Sharpe MC, in Demitrak MA, Abbey SE (editors). Chronic Fatigue Syndrome. Guilford Press, NY. 1996, pp. 248. 106. Prins JB, Bleijenberg G, Bazelmans E, Elving L, de Boo TM, et al. Cognitive behaviour therapy for chronic fatigue syndrome; a multicentre randomised controlled trial. Lancet Mar 17, 2001;357:841-847. 107. Wessley S, Nimnuan C, Sharpe M. Functional somatic syndromes: one or many? Lancet 1999 Sept 11;354(9182): 936-939. 108. Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Pamirez G. Interventions for the treatment and management of chronic fatigue syndrome. A systematic review. JAMA 2001Sep 19;286(11):1360-1368. 109. Fulcher KY, White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ June 7, 1997;314:1647-1662. 110. Buchwald D, Umali P, Umali J, Kith P, Pearlman T, Kormaroff AL. Chronic fatigue and the chronic fatigue syndrome: prevalence in a Pacific Northwest Health Care System. Ann Intern Med 1995;123:81-88. 111. Powell P, Bentall RP, Nye FJ, Edwards RH. Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome. BMJ 2001;322:387-392. 112. Ridsdale L, Godfrey E, Chalder T, Seed P, King M, et al. Chronic fatigue in general practice: is counseling as good as cognitive behaviour therapy? A UK randomised trial. Br J Gener Pract, Jan. 2001;51:19-24. 113. Wearden AJ, Morris RK, Mullis R, Strickland PL, Pearson DJ, et al. Randomised, double-blind, placebo-controlled treatment trial of fluoxetine and graded exercise for chronic fatigue syndrome. Br J Psychiat 1998;172:485-490." It seems to me that Dr. Peter White`s statement- "People only need to read my papers to know that I do not think CFS/ME is primarily psychological"- may contain a typographical error. Douglas T Fraser 1.Advances in Psychiatric Treatment (2002) 8: 351-358 http://apt.rcpsych.org/cgi/content/full/8/5/351?ijkey=380885f4978437b17a37de1d106f9415108223e3&keytype2=tf_ipsecsha 2.Advances in Psychiatric Treatment (2002) 8: 363-365 http://apt.rcpsych.org/cgi/content/full/8/5/363 3.Advances in Psychiatric Treatment (2003) 9: 78-79 http://apt.rcpsych.org/cgi/content/full/9/1/78 4.Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115 http://www.cfids-cab.org/MESA/ccpc-1.html For an analysis of the "biopsychosocial model" underpinning the beliefs of White, Wessely, Sharpe et al, see the work of Dr. Niall McLaren at : http://www.futurepsychiatry.com/Chap7.html Competing interests: None declared
Re: Re: Professor Wessely and Dr White's views 19 June 2004
Peter Culdrose, Severe M.E. sufferer, previously television director SW1 Send response to journal: Re: Re: Re: Professor Wessely and Dr White's views	Sir, I am confused at the statements from White and Wessley in their personal emails to Erik Johnson published by the BMJ and the seemingly contradictory statements made in their featured papers posted by Douglas Fraser. Could Prof. Wessley and Dr. White (OBE) tell us which version is correct. May I also take this opportunity to congratulate Dr. White on his forthcoming OBE. I know that many ME sufferers were upset to hear of this award being given at such a sensitive time as this. Would Dr White like to comment on how he feels about this and whether he feels it right at this time to accept such an honour. Peter Culdrose Severe ME sufferer, previously Television Director Competing interests: None declared
Re: Re: Re: Professor Wessely and Dr White's views 20 June 2004
Stephen E Ralph, Retired diagnostic radiographer and patient with Ankylosing Spondylitis since 1979 and ME since 1996 LN11 8BT Send response to journal: Re: Re: Re: Re: Professor Wessely and Dr White's views	Sir, I read with incredulity that Professor Simon Wessely now states in his correspondence that he takes “a broad view” of CFS and denies that he is exclusively concerned with promoting psychological research into the disorder. This must surely raise important issues as he and his colleagues are about to receive additional funding amounting to £11.1million from both MRC and Government for such psychological research, to the consequential exclusion of urgently needed biomedical research such as that discussed by Spence and Stewart in the current issue of the Biologist (Standing up for ME. Vance Spence and Julian Stewart. Biologist: 2004:51:(2):65-70), which sets out the convincing evidence for vascular dysfunction in ME/CFS. Those of us who are well-acquainted with the literature wonder how Wessely’s apparent present position accords with his published position, which is that ME does not exist other than as an aberrant belief, and that CFS is a functional somatic syndrome that is amenable to cognitive modification techniques and graded (but compulsory) exercise regimes. Wessely is well-known for his beliefs about ME/CFS and those beliefs include the following: “Neurasthenia would readily suffice for ME”; patients are displaying “learned helplessness”; “ME is not a diagnosis”; prognosis “may depend on maladaptive coping strategies and the attitude of the medical profession”; “Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time off work, benefits etc)”; the symptoms seen in ME/CFS “have no anatomical or physiological basis”; symptoms are perpetuated by “inactivity, illness beliefs, symptom focusing and emotional state”; “The majority of patients typically believe that their symptoms are the result of an organic disease process and resent any suggestion that they are psychological in origin and psychiatric in nature. Many doctors believe the converse”; disorders like ME/CFS should not be “dignified by their own formal case definition and body of research”. Readers may wish to see for themselves more comprehensive compilations of Wessely’s published views on ME/CFS, for example “Denigration by Design: A review, with references, of the role of Dr (now Professor) Simon Wessely in the perception of Myalgic Encephalomyelitis” 1987-1996 (Volume I) and 1996-1999 (Volume II); “Consideration of some issues relating to the published views of psychiatrists of the “Wessely School”; “What is ME? What is CFS? Information for Clinicians and Lawyers” and “The Mental Health Movement: A consideration of the role of Professor Simon Wessely and other members of the “Wessely School” in the perception of Myalgic Encephalomyelitis (ME) in the UK”. The latter document was prepared for the Countess of Mar as background briefing for the House of Commons Select Health Committee and contains an appendix of quotations from the published works on ME/CFS of both Wessely and also of psychiatrist Michael Sharpe. All these documents are available online and can be accessed through... http://www.meactionuk.org.uk/Documents_of_importance.htm Given the extent and apparent certainty of the psychiatrists’ published views, is it any wonder that Spence and Stewart point out “Data, data everywhere and no-one stops to think; Data, data everywhere and we need to stop and think”. Competing interests: None declared
mote and beam 21 June 2004
Richard L Ensor, convalescent BA(Oxon) CertEdFE Northants NN10 Send response to journal: Re: mote and beam	I am glad that the study on General Practioners' (GPs') perceptions concludes that Chronic Fatigue Syndrome (CFS) patients do encounter negative stereotyping from those they turn to for help. I think this is a very significant statement and opens the way to acknowledging the difficulties between doctor and CFS patient from the doctor's end. I hope it will serve to help those who counsel doctors and doctors who seek counsel or who wish to contemplate their own perceptions of patients. There are no doubt improvements which could be made on the study and methodology but would not like that which is of value to be missed amid helpful criticisms and hope that this kind of work may progress. I believe that a culture of expedience is at the root of negative attitudes towards CFS and this itself partly created by an abusive culture of masochistic overwork which pervades British society and which is currently pressurising people in all walks of life especially medical professionals employed by the NHS. As a point of interest the TUC have recently scrutinised this issue and suggest that ironically this causes inefficiency as pushing to exhaustion will not yield as much productivity as adequate R&R, good motivation and a well structured use of available time. Given this climate it is easy to understand why Myalgic Encephalomyelitis (ME)/CFS diagnosis has attracted so much negativity and acted as a lightning rod for many frustrations besides the clinical difficulties. Despite inescapable parallels between the general condition of fatigue and ostensible CFS the condition of those with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) is not the same phenomenon and transference may be clouding the issue. I must point out that the evidence from Hokama et al (1) 2003 makes it more plausible than ever that many patients with apparent CFS have CFIDS and a profound neurological disease caused by channelopathy, a theory favoured by Dr A Chaudhuri of Glasgow University. http://www.ncf-net.org/library/Hokama3.pdf Which, if it follows the model of ciguatoxin, may allow ions to leak thus wasting energy in the CNS and lowering the threshold for action potential firing. In one stroke accounting for the hypersensitivity, fatigue and serious systemic neurological dysfunction in CFIDS/ME patients. * Coupled to this Dr P Cheney (who while collaborating with Dr R Suhadolnik developed the clinical model of TH1>TH2 immune shift discussed above) has stated that the illness he characterised as CFIDS results in a perturbation of dynamic hormone reponse including cortisol response meaning that... QUOTE Dr P Cheney "...you don't have a dynamic cortisol response, you cannot work; you cannot engage in the workplace; you cannot deal with complexity; you cannot deal with irritating people; you cannot deal with any stress whatsoever." As if this was not enough, people with this form of immunological CFS, ie CFIDS, have an unusual predisposition to IBS and other gut disease as mentioned above. As Pavlov discovered many decades ago, bowel disease increases the effects of stress by lowering the threshold stimulation required to produce certain stress related phenomena. So while I appreciate that medical doctors are under a lot of stress, I beg to point out that CFIDS/ME patients are apparently suffering from vastly more stress due to a triple whammy of stress magnification at different levels. Hence it is understandable that both parties may show signs of stress albeit in different ways. For this reason I am certain that empirical psychology can eventually benefit CFIDS patients but would comment that before that can happen patients' groups require evidence that the old habits of subjective introspective stereotypical psychology really are broken and that they can trust the judgement of those they turn to for help. As this study points out, at a grass roots level they cannot and still need to be discriminating. I would hope that the results of further study can help all parties to resolve their respective difficulties and develope a constructive outlook, but that is easier for some than it is for others. * Endogenous origin for the CFS ciguatera epitope has yet to be established to the best of my knowledge. I would be interested to know what funding has been made available for following up Hokama's work here in the UK. (1) Y Hokama et al: Chronic Phase Lipids in Sera of Chronic Fatigue Syndrome (CFS), Chronic Ciguatera Fish Poisoning (CCFP), Hepatitis B, and Cancer With Antigenic Epitope Resembling Ciguatoxin, as Assessed With MAb- CTX. : Journal of Clinical Laboratory Analysis 17:132–139 (2003) Competing interests: Diagnosed ME/CFS & require state benefit in order to live.
Re: Interesting coupling - IBS and CFS 21 June 2004
Peter Morrell, Hon Research Associate, History of Medicine Staffordshire University, UK Send response to journal: Re: Re: Interesting coupling - IBS and CFS	"This has led me to believe that 'leaky gut syndrome' is a common factor in both and IBS may be a limited aspect of what could become a more debilitating and chronic fatigue state with attendant symptoms not unlike post-encephalitis syndrome." [1] Could John Heptonstall be persuaded to expound in a little more detail what 'leaky gut syndrome' actually entails? many thanks [1] John Heptonstall, Interesting coupling - IBS and CFS, BMJ e- letter, 16 June 2004 Competing interests: None declared
Re: Re: Interesting coupling - IBS and CFS 22 June 2004
John P Heptonstall, Director of The Morley Acupuncture Clinic and Complementary Therapy Centre LS27 8EG Send response to journal: Re: Re: Re: Interesting coupling - IBS and CFS	Sir Perhaps the best way to respond to Peter Morrell is to provide a couple of references that explain 'leaky gut syndrome':- http://www.liverdoctor.com/04_leakygut_syndrome.asp http://www.afpafitness.com/articles/LEAKGUT4.HTM Kind regards John H. Competing interests: None declared
Re: Professor Wessely and Dr White's views 22 June 2004
Erik R Johnson, n/a Incline Village 89450 Send response to journal: Re: Re: Professor Wessely and Dr White's views	Professor Wessely's message of clarification of his views that included a citation of Dr Cheneys earlier TH1/TH2 immunological shift indicates to me that the psychiatric school is finally starting to notice the work of prominent CFS/ME researchers who have long recognized that this is a physiological illness.. Perhaps Professor Wessely who has said that he doesn't think much of Dr Cheneys concepts is now reversing his opinion of Dr Cheney. Professor Wessely's acknowledgment of measurable immune abnormalities which he can no longer ignore strike me as comparable to the "bargaining with the evidence" that Flat Earthers must have done. When a notorious Flat Earther surprises you by admitting that he has seen evidence of a curve, it only seems reasonable to me that you can ask him to throw away all of his maps and charts which were based on a faulty premise. If CBT and GET were developed using a "behavioral induced syndrome" model of illness, their applicability must be questioned if their illness model is changed to "Not primarily psychological". Professor Wessely can take a broad view, but not one so broad that it encompasses contradicting philosophies. He must promote the concept that CFS/ME is primarily psychologically induced or that it is not, but he cannot do both. -Erik Johnson Competing interests: None declared
Re: Re: Interesting coupling - IBS and CFS 22 June 2004
Erik R Johnson, n/a Incline Village 89450 Send response to journal: Re: Re: Re: Interesting coupling - IBS and CFS	http://news.biocompare.com/newsstory.asp?id=40849 Molecular Defect Found For The First Time In IBS Patients 6/9/2004 Source: Novartis New research published in the current issue of Gastroenterology identifies for the first time a molecular defect in the gastrointestinal (GI) tracts of patients with irritable bowel syndrome (IBS) that does not appear in those without the condition. "IBS has long been classified as a purely psychosomatic condition," says GI expert Michael Gershon, M.D., professor and chairman, Department of Anatomy and Cell Biology, College of Physicians & Surgeons, Columbia University, New York. "Patients may have been treated solely for a condition that was supposedly 'all in their heads.' However, IBS is now associated with a very real abnormality in the gut and one that is as biochemical as any other." ----------------------------------------------------------- The comparison between IBS and CFS is very interesting indeed. Especially the "It's All In Your Head" part. -Erik Johnson Competing interests: None declared
Renaming CFS : Neuro-Immuno-Myo-Endocrinopathy (NIME) 23 June 2004
Joseph . C . Obi, Professor Of Complementary and Alternative Medicine (CAM) Research ; School Of Natural Medicine , Larnarca , Cyprus , European Union . Send response to journal: Re: Renaming CFS : Neuro-Immuno-Myo-Endocrinopathy (NIME)	My 'Critical Problem' with the term 'Chronic Fatigue Syndrome (CFS)' has always been that the 'Dual Mention' of the highly negative words 'Chronic' and 'Fatigue' could possibly have an 'Alarming Overriding Potential' to 'Synergistically Reinforce' the 'Relative Helplessness' of both 'Patient' and 'Practitioner' alike. Neuro-Immuno-Myo-Endocrinopathy (NIME) would hopefully be a much more appropriate Medical Phrase; and I very confidently pray that such an exceedingly simple intervention as Renaming (Or Reframing) CFS , will definitely go a refreshingly long way in consistently empowering both 'Clinicians' and 'Sufferers' accordingly. Please note that neither 'Neuro-Immuno-Myo-Endocrinopathy (NIME)' nor 'Chronic Fatigue Syndrome (CFS)' should still professionally be regarded as 'Complex Diagnoses Of Exclusion' any longer ; as Viral Protein 1 (VP1) and a few other 'Pseudo-Scientific Molecules' have ethically been either observed or isolated , in well over 60% of NIME (CFS) cases. Competing interests: Professor Joseph Chikelue Obi MBBS MD MPH DSc FRIPH FACAM is also the Chairman of the General Wellness Assembly (GWA); an International Professional Body for Independent Wellness Consultants . He humbly invented the 'Omnipill'.
Re: Re: Professor Wessely and Dr White's views 23 June 2004
Peter Culdrose, Severe M.E. sufferer, previously television director SW1 Send response to journal: Re: Re: Re: Professor Wessely and Dr White's views	"Professor Wessely can take a broad view, but not one so broad that it encompasses contradicting philosophies. He must promote the concept that CFS/ME is primarily psychologically induced or that it is not, but he cannot do both. -Erik Johnson " This indeed is a serious issue, Can Professor Wessely enlighten us? I feel the ME community derserves an answer. Peter Culdrose Severe ME Sufferer Previous Television Director Competing interests: None declared
Re: Interesting coupling - IBS and CFS 23 June 2004
Erik R Johnson, n/a Incline Village NV 89450 Send response to journal: Re: Re: Interesting coupling - IBS and CFS	Perspectives can change in a moment. The abstract on general practitioners perceptions perceptions of CFS compared to IBS has an entirely new meaning when read with the knowledge of the molecular defect found in IBS. Suddenly it is the general practitioners who are the obstinate ones. No wonder their patients challenged their authority and refused referral for mental health interventions. Now that psychotheorists have had another one of their "behavioral illnesses" stolen from them by science, will there be any apology to the patients who only insisted that their suffering was as real as they claimed? Will the psychotheorists now be any less resolute in trying to fit CFS into their psychological framework? How many more illnesses must go through this psychoprocess before theories of psychological causality are removed from phsyicians front line of defense against their patients insistence that they are truly ill? -Erik Johnson Competing interests: None declared
Re: Renaming CFS : Neuro-Immuno-Myo-Endocrinopathy (NIME) 23 June 2004
Erik R Johnson, n/a Incline Village NV 89450 Send response to journal: Re: Re: Renaming CFS : Neuro-Immuno-Myo-Endocrinopathy (NIME)	Professor Leonard Jasons DePaul University study of medical students attributions of illness severity corresponding to different illness names for the same symptom set indicates that selection of illness names does indeed influence the perceptions of practitioners. http://www.cfids.org/archives/1999/1999-4-article04.asp This is taken as evidence of the necessity to abandon the trivializing "CFS" in order to induce a serious response from physicians. Many CFS patients in the USA had hoped that the medical name of Myalgic Encephalomyelitis would inspire the appropriate response from doctors as it had induced a more serious illness attribution in Prof. Jasons study. The difficulties ME patients are having indicates that even this "serious sounding medical name" has not had the desired effect. The variability in the medical students response to the same illness presentation described in Prof. Jasons study and the general practitioners psychological misperceptions of IBS, which are only now being corrected, point to the source of the more fundamental problem; General Practitioners are influenced more by belief systems than symptoms. If the medical students in Prof. Jasons study assessed severity according to the illness presentation rather than correlating the severity to the name, the symptoms presented under the different names should have resulted in the same diagnosis. While I agree that changing to a more "serious sounding medical name" may indeed influence suggestible doctors, I would like to point out that people seeking the cause of their pain don't bring medical names along to convince the doctors of the illness severity - they bring their symptoms. If the physicians were responding in an objective manner to the illness presentation, the name should not have made a difference. -Erik Johnson Competing interests: None declared
Can't see the wood for the trees 24 June 2004
David W Jameson, former patient Belfast, BT4 Send response to journal: Re: Can't see the wood for the trees	Sir, Readers may be interested to know that Erik Johnson has written publicly about his own recovery from CFS in a number of internet discussion groups. "I discovered years ago that I have an extreme neurological reaction to unbelievably slight amounts of specific mold toxins." "I found that my depression had a perfect correlation to cytokine storm from exposure to my MCS irritants." "My perception of exposure was the best indicator - not any tests. I trained myself to recognized subtle symptoms of exposure by deliberately testing myself against various mold colonies." "Soon, thanks to my ability to perceive it, I could feel that a vast number of people in CFS support groups carried either this mold or a lesser mold of higher toxin concentration on their clothing and were probably suffering a long term inflammatory response in the same way I was." "By avoiding this long term inflammatory response I have exerted more control over my CFS symptoms than anything else I've tried." "Within six months of following a strategy of extreme mycotoxin avoidance, I returned to Dr Petersons office with pictures of myself after climbing Mt. Whitney, the highest mountain within the contiguous 48 states in the USA. I have spent the years since then controlling my symptoms through extreme mycotoxin avoidance and being discounted by every researcher, doctor and PWC I tell my story to." For someone who is so against psycho-social theories of CFS, it is interesting to see that his own recovery is clearly psycho-social in nature. In fact, it is as good an example of the placebo effect in action as you are likely to find anywhere. David Jameson http://www.cfs-fm-sandiego.org/Lyme/extreme_mold_avoidance.htm http://health.groups.yahoo.com/group/cfs_research/message/14128 http://health.groups.yahoo.com/group/cfs_research/message/14182 Competing interests: None declared
General Practitioners and Hospital Specialists Have Different Perceptions of Irritable Bowel Syndrome 24 June 2004
Peter J Whorwell, Consultant Physician and Senior Lecturer South Manchester University Hospitals, M23 9LT, Richard Lea, Lesley A Houghton, Jonathon Hasleton Send response to journal: Re: General Practitioners and Hospital Specialists Have Different Perceptions of Irritable Bowel Syndrome	Editor –The study by Raine et al provides us with a rare insight in to general practitioners’ (GPs) perceptions concerning chronic fatigue syndrome and irritable bowel syndrome (IBS) and the implications that these opinions have on treatment preferences [1]. We collected similar data regarding IBS from GPs, but additionally compared this with opinions from hospital specialists (HS)[2]. Using a questionnaire employing a scoring system of 1 (strongly disagree) to 5 (strongly agree) we found that both groups of doctors had similar perceptions about patients levels of neuroticism (HS3,GP2.6), anxiety (HS3.8,GP3.6) and hysteria (HS2.1,GP1.9) although the specialists felt that patients were more depressed (HS3.4,GP2.8)* and demanding (HS3.1,GP2.4)* than GPs. In addition each physician group was asked to place the following possible pathophysiological mechanisms in order of decreasing importance. Specialists thought that hypersensitivity* was of paramount importance, followed by motility, stress, infection, and then diet*. GPs ranked stress as most important, followed by motility, hypersensitivity, diet and finally infection. (* Indicates a statistically significant difference between groups). Regarding treatment: GPs were significantly more likely to use dietary measures and antispasmodics where -as consultants were less likely to use laxatives. There were no significant differences in the use of antidiarrhoeals, or somewhat surprisingly, antidepressants. Despite the prevalence of IBS, relatively little is known about doctors’ perceptions of the illness. In the future, advances in basic science and clinical research may not only result in better treatments being developed, but should also advance our understanding of the underlying pathophysiology. Hopefully this will result in legitimisation of the illness and a reduction in some of the preconceptions and misconceptions that surround this condition. References [1] Raine R, Carter S, Sensky T, Black N. General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ, doi:10.1136/BMJ 38078.503819.EE (published 28th May 2004) [2] Lea R, Houghton LA, Hasleton J, Whorwell PJ. Different approaches to the management and understanding of pathophysiology of irritable bowel syndrome (IBS) in primary and secondary care. Gut 2002; 51: A248 [3] Lea R, Houghton LA, Hasleton J, Whorwell PJ. Diagnostic Criteria for Irritable Bowel Syndrome: Utility and Applicability in Clinical Practice. Digestion 2004. In press. Competing interests: None declared
Re: Can't see the wood for the trees 24 June 2004
Erik R Johnson, n/a Incline Village NV 89450 Send response to journal: Re: Re: Can't see the wood for the trees	I'd like to tell a story about the trees up at Incline Village. Huge stands of trees were all dying simultaneously and everyone was looking for the cause. Of course the trees right next to the road were the most visible and they were in terrible shape so the likliest culprit was the salt used to de-ice the roads and so people were pushing for a salt substitute and for federal funds to save the trees. But I pointed up to the trees thousands of feet above the roads and asked "If road salt was the cause, what about those trees?". Since people had already made up their minds that it was the salt, they proceded to come up with wild explanations that the salt must be blowing in the wind up to those trees, somehow without affecting the trees that were in between the road and the dead groves high above. So the trees up high were then found to have bark beetles and now there were opposing groups who applied for federal funds to address the "main cause" and fought each other to prove that their "cause" was the more primary. But next the trees were found to be dying that had no beetles and were nowhere near a road for any potential salt exposure. Surely it must be the drought we've been experiencing and it must be the lack of water that weakened the trees and caused them to succumb to these other factors. But it was rather odd that some trees were succumbing in areas that had plenty of water while others in drier areas were thriving. But still the focus on the drought shifted the debate again with all sides arguing for their favorite cause and trying to combine the factors in such a way that they could somehow make sense. Yet Lake Tahoe has been through droughts before without the trees dying like this. These proposals just didn't seem entirely satisfactory. None of these factors had come together before in such a way to create this effect. The theories, even when all combined simply didn't "fit the facts" yet this didn't stop most people from promoting their favorite cause as primary or even cause them to question why trees hadn't been subject to these factors before. Finally someone pointed out that Tahoe had been so heavily logged a hundred years ago that all of the old growth trees were virtually removed. The new growth that replaced them consisted of trees that were all the same age, and the weakness that caused them to succumb to all these other "stressors" was that they were all of the same age. This was the common denominator that tied the clusters together. It wasn't until the underlying situation was identified that the other theories could be incorporated in a way that all the previous factors presented could be seen as secondary even though the inconsistencies which should have inspired the quest for that explanation had been apparent all along. It was only identification of the primary etiology that reconciled factions of theorists who somehow never managed to agree that their theories did not fit all of the facts - exactly as had occurred between scientists and empiricists when confronted with the "Bumblebee paradox". Yes I improved my symptoms exactly as I described. Had I not, my mind would have been in no condition to engage in this debate. So I set out to use my energy and restored mental function to speak out for those who have not been so fortunate and to try and make sense of this phemonemon. I don't hide my accomplishment in finding something that helped me. I'm proud of it and I have offered my story to many others in the hope that it might help them too. But rather than ascribing my improvement to psycho social factors, would it not seem more reasonable to blame the powerful protein synthesis inhibitors and potent neurotoxic properties of Tricothecene mycotoxins as an exacerbating factor in a neurological inflammatory condition such as CFS/ME? In other words I am still looking for a fundamental reason why I acquired a susceptibility to neurotoxic chemicals while those who conclude that my level of recovery was due to a psycho social behavioral adjustment are still refusing to look at the incredibly long history that such social factors have of not resulting in illnesses such as CFS. They are still trying to blame factors that have no record of consistently causing these types of problems in the same way the the tree theorists fail to examine the exclusionary evidence which suggested that their concepts did not address all the facts. If you examine my story, you will see that I make no claims for deciphering the "cause" of CFS, only that I found a desperate means to control my symptoms. If a number of trees suddenly fall in the forest, but not in compliance with the factors that are being implicated - will anyone hear the significance? -Erik Johnson Competing interests: None declared
Re: Can't see the wood for the trees 25 June 2004
John P Heptonstall, Director of the Morley Acupuncture Clinic Leeds LS27 8EG Send response to journal: Re: Re: Can't see the wood for the trees	Sir I suggest that it is David Jameson who "Can't see the wood for the trees" - does he have something against people taking responsibilty for their health and its restoration as Erik Johnson proves is possible? It's happening everyday while the medical profession ties itself in knots with multifarious 'explanations' and ignores all patients whose recovery is self-based through studying all potential paths to health and finding the one that suits. I find the lack of interest, in researching 'non-medical' cures, by government abysmal. Daily, people from all walks of life 'spontaneously' recover from all manner of diseases without or despite 'medical assistance', yet the medical system treats them as lepers rather than primary subjects for investigation. Regards John H. Competing interests: None declared
CFS Mechanism 25 June 2004
Erik R Johnson, n/a Incline Village NV 89450 Send response to journal: Re: CFS Mechanism	The level of recovery I've experienced by extreme mycotoxin avoidance is based upon the premise that my illness shares components of the mechanism responsible for Sudden Infant Death Syndrome. I was surprised to hear that the psychotheorists attribution of "Cot Death" to parental "Munchausen by Proxy" syndrome has only recently been overwhelmed, since strong exclusionary evidence has been known for years. The "Richardson Hypothesis" and Dr Sprotts compelling demonstration of the reduction of SIDS prevalence by the BabeSafe impermeable membrane to isolate infants from the potentiated mycotoxins produced by molds in mattresses containing flame retardants has done far more than cast the psychological causality theories of SIDS into doubt. http://www.cotlife2000.com/ I'm presuming that the infants are not subject to the "placebo effect" and that their workplace stress may be considered minimal, though I'm sure that is open to debate. The Richardson Hypothesis and Dr. Sprotts measures may not provide the entire answer to SIDS but the results have been sufficiently positive that general practitioners ignorance of this effect almost certainly constitutes medical malfeasance. Despite the drastic reduction in SIDS, there are exceptions to the spectacular "BabeSafe Effect" are described by Dawn Winkler, former vice president of "Concerned Parents for Vaccine Safety" who has noted that Dr Sprotts hypothesis doesn't entirely explain SIDS. encephalopathy.http://poisonevercure.150m.com/sids_vaccines_play_a_role.htm My experience is that a major portion of the driving force in my CFS is the influence of specific mycotoxins as an inflammatory trigger combined with a demyelinating neuropathological illness, a combination of the effects described on these two websites. The level of recovery I demonstrated by acting in accordance with this concept has been dismissed by people who have applied this somewhat convoluted pseudological argument of, "Since everybody knows that nobody knows of anything that helps CFS, if you found something that helped you, then your illness can't possibly be CFS". This argument has been used so often that I would like to warn people that applying this sort of logic means that no therapy can ever be found since as soon one is discovered, the very fact that it had an effect dismisses the therapy from consideration. The other commonly used opposing argument is flawed by presupposing a premise that is far from proven; "You cannot develope a physiological strategy for dealing with a psychological illness. Therefore any effect you experienced must have been placebo effect". It scarcely seems believable that the mindset of physicians in general have been such that we have in recent history the rejection of Dr Barry Marshalls H Pylori concepts and the failure to examine Dr Sprotts demonstrable SIDS reduction results as examples of medical intransigence. Yet such has been the case. I can only hope that the repeated demonstrations of this phenomenon will draw public attention to the damage and patient abuse created by the psychotheorists dismissive "unexplained medical beliefs". Society has suffered far too much from the application of these obstreperous and obstructionist behaviors. I set out to act in accordance with a concept that appeared to me as having a logical basis and demonstrated the results. My experience indicates that my case of CFS may be a variant of the mechanism responsible for SIDS. -Erik Johnson Competing interests: None declared
Prof Wessely, Dr Whites Views - Courtesy 26 June 2004
Erik R Johnson, n/a Incline Village NV 89450 Send response to journal: Re: Prof Wessely, Dr Whites Views - Courtesy	Dr White contacted me to ask that I show the common courtesy of not releasing any of his statements from our personel correspondence without asking permission. I sincerely apologize for my lack of etiquette and I hope my reply to Dr White makes my position clear. __________________________________________________________ Dr White. I beg your pardon for quoting from your personal correspondence. I thought the statement was general enough that if your papers reflect this stance, your position on CFS was in the public realm. I wish I could say I meant no harm, but I have been forced to experience CFS in a way that brooks no compromise with psychological views or certain specific recommendations of therapy, and I wish to stop these views and therapies from being inflicted on myself and others in a similar condition. I am not against graded exercise or I wouldn't have undertaken the proposition myself. But my own experience and that of others I know is that graded exercise in no way corresponded to an increased ability from rehabilitation. The exercise intolerance was totally dictated by the inflammatory response as modulated by some unknown immunological upregulation. Trying to overcome this by overexertion and attempting to make progress through strength of will without taking this factor into account was devastating. So much so that I feel it is of vital importance that this inflammatory factor be made the principle issue of investigation and that GET conducted without knowledge of this is just a shot in the dark. I remember the story of a schoolgirl with this illness who was forced by her family to shake off her "negative attitude" and go to school despite her hysterical sounding insistence that she was deathly tired. The school called to say that she hadn't shown up for her classes and when they went to retrace her steps, she was found laying on the sidewalk fast asleep in the pouring rain. Only then did her family believe her. Trying to induce someone to shake off their attitude and do GET without realizing that at any moment someone who had been doing somewhat better could suddenly lose their capacity again and collapse is like that family pushing that little girl out in the rain. We need answers for what is causing that. Not a push in the back to buck up and show a little more attitude. -Erik Johnson ___________________________________________________________ Again I make my appeal to Professor Wessely and Dr White that if you truly consider CFS/ME to be a physiological illness, to act in accordance with that view and address the immunological abnormalities or recuse yourselves from this investigation. Competing interests: None declared
Re: Medical correctness and evidence based medicine 26 June 2004
Douglas T Fraser, ex-violinist London W6 Send response to journal: Re: Re: Medical correctness and evidence based medicine	Editor - "Several randomised controlled trials, confirmed by four systematic reviews, have shown that the benefits of both cognitive behaviour therapy and graded exercise therapy considerably outweigh the risks in ambulant adult patients" (White, Wessely & Sharpe, 7th June 2004) Given the high drop out rates from these psychological/behavioural trials of GET/CBT, the methodological inadequacies referred to in one of these systematic reviews (1), the use of the confounding "Oxford criteria", and the fact that these interventions are not "remotely curative" (2) but only "modestly effective"(2), I am intrigued to know what the authors are implying when appealing to "evidence based medicine" (EBM). It would appear that very few outside the particular field of psychiatry promoting GET/CBT feel even remotely enthused over these rather dismal results, and seem not to be persuaded that merely invoking "evidence based medicine" (Randomised Controlled Trials) and "systematic reviews" will magically transform this lack of enthusiasm. If the results of these now rather aged "treatment approaches" are in fact so modest and non-curative, then presumably, after all this cooking time, there must be something quite wrong with the Basic Science supporting these "treatment approaches" (see below). Since reading Sehon and Stanley`s "Philosophical analysis of the evidence-based medicine debate" (3) which reframes EBM`s alleged "paradigm shift" within the more reasonable and less sensational Quinean "web of belief" metaphor, I am rather more cautious when observing an appeal about "treatment approaches" where the invocation of "EBM" (RCT`s, reviews etc) appears to be rather hopefully backing up that appeal. To illustrate something of the issues involved, a few passages from that essay may be worth considering: ------------------------ Over the past decade, the term "evidence-based medicine" (or EBM) has gained considerable currency. EBM has been described as a "paradigm shift" [1] that will "change medical practice in the years ahead."[2] Some suggest that the principles of EBM should be part of the standard training of all physicians and that those physicians who violate its precepts should ultimately face license suspension.[3] Critics of EBM claim that "there is no evidence (and unlikely ever to be) that EBM provides better medical care," and that EBM is simply "following its own political agenda."[4] Other critics use even harsher rhetoric, claiming that EBM's assumptions are "absurd" and "irrational".[5] Some commentators claim a middle ground by saying that EBM and other approaches should be "harmonized".[6] The critics argue that EBM proponents overemphasize the value of clinical trials. These critics suggest that there are other aspects to medicine. Some note the fundamental role of basic science in understanding the physiologic mechanisms of the body, the biology of disease, and the cellular targets of drugs.[5,7] There are also critics who emphasize the value of clinical experience and the judgment of individual physicians; [7 -10] these critics sometimes emphasize the art of medicine, [10] and contrast this with the science of medicine, or they speak of techne vs. theory or compassion vs. reason. And other critics might argue that there are circumstances in which observational studies (or outcome studies)are a better choice than clinical trials [11]. ---------------------------- As has been noticed by others [7,13], the debate about the value of EBM has been muddied by an unfortunate tendency to define the term "evidence-based medicine" in an overly broad manner. For example, here is one definition of EBM that has some claim to being authoritative: "The conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients" [14]. In a similar vein, Brian Haynes writes "Advocates of evidence-based medicine want clinicians and consumers to pay attention to the best findings from health care research that are both valid and ready for clinical application".[15] Taken at face value, these definitions seem merely to say that EBM is the wise use of the best evidence available. Given that characterization alone, it would be astonishing that there is any dispute about EBM. It would be equally astonishing that anyone could think EBM, defined in this manner, revolutionary or even useful. After all, who could possibly be opposed to using the best evidence wisely? The very term "evidence-based medicine" seems similarly vacuous – as if any alternative to EBM means doing medicine based on something other than evidence. Even homeopaths base their treatments on evidence of a sort, and we suspect that homeopaths would even claim that they are conscientiously and explicitly using the best evidence available. Of course they are wrong about the latter claim, but nothing in these standard definitions of EBM tells us why homeopathy fails to be evidence- based medicine. Furthermore, few would suggest that the very idea of using evidence in medicine constitutes a revolutionary paradigm shift. Perhaps advocates of the term "evidence-based medicine" have a philosophical theory of evidence, a theory according to which everything that has passed for evidence prior to the EBM movement was not evidence at all. However, if they have such a theory, we have not seen it expressed. ----------------------------- At the same time, Brian Haynes acknowledges that"most scientists and EBM advocates are ignorant of the philosophy of science and give little or no thought to constructing a philosophical basis for their activities."[15] ----------------------------- It seems to us that when proponents grandly describe EBM as a paradigm shift, they not only make a philosophical mistake, but they inadvertently have an unfortunate effect on the debate about the first order questions, for talk of paradigm shifts unduly polarizes the debate about the value of EBM.[23] Recall that Kuhn describes a paradigm as the "entire constellation of beliefs, values, techniques, and so on shared by the members of a given community".[19] When proponents of EBM suggest that it is a new paradigm, this certainly fosters the impression that an entire set of beliefs, values, and techniques is to be left behind, and that the whole world of medical research and clinical practice is completely different than it was in the days before EBM was recognized. This in turn strongly suggests that physicians have a stark choice: accept the new regime and completely reject the old, or defensively hold on to the old and reject EBM entirely. If something as grand as a complete shift of paradigm is in the offing, then the old physicians, with their old understandings, training, and paradigm, are relics to be removed as soon as possible. The prospect of this kind of consequence would certainly lead to a defensive retrenchment and even anxiety. If you exaggerate the claims for EBM, you intensify the natural defensiveness of those who feel themselves not to be completely in line with the new regime. This is not a productive atmosphere in which to hold a debate about the merits of EBM. ---------------------------- EBM and Basic Science From our knowledge of human physiology, disease, and pharmacology we might be able to infer whether a particular drug would be effective in treating a given condition. With the basic science approach, we work up from our knowledge of physiology and biochemistry to a prediction of what will happen. Clinical trials essentially ignore, or suspend temporarily, all of that and determine whether a treatment works by trying the treatment in a large number of cases under controlled conditions. Basic science and RCTs thus represent two different paths to answering intervention questions. Seen explicitly in terms of the web metaphor, RCTs seem to take the shortest path possible from the periphery of the web towards the mid-web space where clinical decisions are made. Within the course of a clinical trial, we will make observation statements that seem very directly relevant to our original treatment question, for we will be observing clinical endpoints for other patients with condition Y when given treatment X. The basic science approach, on the other hand, looks rather different. On the basis of biochemistry and physiology, we might predict certain clinical endpoints for patients with condition Y when given treatment X. These predictions will be based on a very different set of observation statements than those involved in RCTs. The observation statements that ultimately support the basic science approach will be those that support our knowledge of biochemistry and physiology. Although EBM and the basic sciences embody different approaches, this does not mean that they are competitors. In fact, the two approaches need each other; neither can stand alone. This is perhaps easiest to see with basic science. If basic science could give us perfect confidence in the safety and efficacy of an intervention, then clinical trials would indeed be theoretically superfluous. However, we rarely, if ever, can be certain of both the safety and efficacy of a treatment without clinical testing, for our knowledge of the human body and how it interacts with the environment is far from complete. While it is perhaps less obvious, the method of clinical trials is also not able to stand alone. RCTs can sometimes give us confident answers to intervention questions even when our basic scientific knowledge is insufficient for this purpose (e.g., on many questions concerning diet and exercise); however, this does not mean that RCTs are completely independent of basic science. If nothing else, a controlled trial needs a hypothesis to test. Typically, treatments will be suggested as candidates because of other more basic scientific research. A classic case of this is the accidental discovery of penicillin by Alexander Fleming, though Fleming himself initially paid little attention to the possible therapeutic uses of the mold.[26] Contemporary basic scientific work on thalidomide provides another example.[27] But there is also a more fundamental way in which RCTs cannot stand apart from basic science. Even when a clinical trial returns positive results in the treatment arm that satisfy tests of statistical significance, we will have more confidence in these results when they have some antecedent biological plausibility.[28,29] Put more generally, we would suggest that the degree of confidence appropriate for a clinically tested claim is a function of both the strength of the clinical result and the claim's antecedent biological plausibility. This relationship is perhaps obscured by cases in which we understand very little about the pharmacology of a drug (e.g., treatment of ulcerative colitis with sulfasalazine). In such cases, it is perfectly appropriate that strong clinical results yield a reasonably high degree of confidence. But we shouldn't forget that we would be even more confident if the results were exactly what biochemistry and physiology would lead us to expect. More importantly yet, if the basic sciences gave us very strong reason to believe that a drug would not be effective, then it is appropriate to be very cautious when interpreting apparently positive clinical results. For example, there have been some RCTs of homeopathic remedies according to which subjects receiving the homeopathic remedy did better than those receiving a placebo, and where the P-values are less than .05 or even less than .001.[30] However, given that homeopathic remedies are typically composed of nothing more than water, accepted basic science should lead us to seriously doubt that these 'drugs' can be effective. In any event, we cannot simply accept that pure water (in the form of a homeopathic medicine) is medically effective unless we are also willing to revise much of our basic scientific conception of chemistry and the body. The interior of the web acts as a compass we use to interpret the direction we should take from signals from a new RCT. Statistical information from an RCT is virtually uninterpretable and meaningless if stripped away from the backdrop of our basic understanding of physiology and biochemistry. The dependence of RCTs upon the backdrop of basic science is unsurprising from the Quinean perspective. The point is essentially an application of the Quinean doctrine of holism, the claim that our theories are put to the test as whole bodies rather than being tested sentence by sentence. (Tonelli and Callahan [31] make a similar point about the need for theory in interpreting empirical results. However, they suggest that evidence concerning alternative medicine should be weighed and interpreted in terms of its theory of disease, e.g., theories involving undetectable spirit essences or the like. This does not follow at all. If we are judging the effectiveness of alternative medicinal therapies, then we evaluate the evidence in light of the theory about disease that we believe to be true. It would be a silly and pointless exercise to evaluate evidence in light of a theory we believe to be false.) The dependence of RCTs on basic science appears not always to have been fully appreciated by some EBM proponents. In some discussions of hierarchies of medical evidence, basic physiology and biochemistry is put at the very bottom or is ignored altogether.[14,32] Thus, these proponents of EBM seem to say that we should only look at evidence from RCTs (when we have it), and that medical practice is conducted in isolation of our understanding of physiology and biochemistry. We claim that such views are wrong. On the other hand, this is not to say that if a clinical result flies in the face of our physiological understanding that we should just reject it out of hand, as suggested by Couto [5]. In general, given the complexity of the human body and our nascent knowledge of it, if we use basic science alone to judge the safety or efficacy of an intervention, then our judgment will be fraught with a high degree of uncertainty. For example, some laboratory evidence suggests that estrogen might have a positive effect on brain cells, and thus suggesting that hormone therapy might help to ward off dementia. However, a recent controlled trial strongly suggests that whatever positive effect such hormones have, these effects are outweighed by negative effects.[33] On the other hand, in an extreme case like homeopathy, where the biological plausibility is so low, our background biological knowledge does and should affect our interpretation of the evidence from RCTs. ------------------------------- If there are EBM proponents who think that medical practice can be reduced to an algorithmic application of evidence from RCTs, they are certainly mistaken.[37] ________________________ Sincerely Douglas T Fraser 1.Interventions for the Treatment and Management of Chronic Fatigue Syndrome A Systematic Review Penny Whiting, MSc; Anne-Marie Bagnall, PhD; Amanda J. Sowden, PhD; John E. Cornell, PhD; Cynthia D. Mulrow, MD, MSc; Gilbert Ramirez, DrPH Journal of the American Medical Association Vol. 286, #11, pp. 1360-1368 2. Chronic Fatigue Syndrome - Trials and Tribulations Simon Wessely, MD, MSc, FRCP, FRCPsych, FMedSci Journal of the American Medical Association Vol. 286, #11 September 19, 2001 3.A philosophical analysis of the evidence-based medicine debate Scott R Sehon and Donald E Stanley BMC Health Services Research 2003, 3:14 doi:10.1186/1472-6963-3-14 http://www.biomedcentral.com/1472-6963/3/14 Competing interests: None declared
General practitioners' perceptions of ME/CFS and beliefs about its management, as laid out by members of the Wessely school: qualitative study of subversion (Abstract) 27 June 2004
Paul Lynch, Housebound Unable to work , Swansea Send response to journal: Re: General practitioners' perceptions of ME/CFS and beliefs about its management, as laid out by members of the Wessely school: qualitative study of subversion (Abstract)	Objectives - To compare general practitioners' perceptions of ME/CFS and to consider the implications for patients. Design - Qualitative analysis of transcripts of BMJ Rapid Responses. Participants and setting - A randomly selected sample of Rapid Responses in the BMJ Results - Doctors who favour the Wessely schools' functional somatic theory tended to stereotype patients with ME/CFS as having certain undesirable traits. This stereotyping was due to a lack of empathy for sufferers and contempt for the Hippocratic oath; ignorance of the neurological classification (G93.3): a systematic denigration of a neurological disease by those with a clear conflict of interest: the (F48.0) mis-classification of ME/CFS by members of the Wessely school, and a subsequent 'non-disease' poll in the BMJ. These factors have led to difficulties for many general practitioners in managing patients with ME/CFS. Conclusions - Barriers to the sound research and clinical management of patients with ME/CFS are partly due to doctors' faulty illness beliefs, which result in negative stereotyping of patients with ME/CFS, and partly the BMJ for not taking into account the best available evidence. The consequence of these barriers have led to a contempt for sufferers which can only be described as being tantamount to abuse. Competing interests: Struggling to survive on £43 per week since September after being refused Incapacity Benefit because of doctors' faulty illness beliefs - currently waiting an appeal.
Re: Re: Can't see the wood for the trees 27 June 2004
David W Jameson, former patient Belfast, BT4 Send response to journal: Re: Re: Re: Can't see the wood for the trees	Sir, Mr Heptonstall thinks I have "something against" people taking responsiblity for restoring their health. That is certainly not the case, and if he looks back at my message he will see this. I simply pointed out that Erik Johnson's reason for why he recovered is probably incorrect. Mr Heptonstall appears to have an irrational, negative attitude to the idea that someone might recover from CFS due to the placebo effect. I would suggest that it is because of attitudes like his that the state of CFS research is in such a poor state. If Mr Heptonstall is really as open-minded as he claimed in a previous message, he is welcome to contact me by email and I will be happy to have a discussion with him. David Jameson Competing interests: None declared
A Crisis in Confidence, The Widening Circle 27 June 2004
Erik R Johnson, n/a Incline Village NV 89450 Send response to journal: Re: A Crisis in Confidence, The Widening Circle	Why did it take a housewife to discover the Lyme epidemic? What lack of scientific method, behavioral problem or mental flaw made doctors oblivious to what a Polly Murray, a housewife armed only with an arsenal of common sense could see so clearly?; That the "genetically induced Juvenile Rheumatoid Arthritis" that doctors were diagnosing in Lyme Connecticut occurred at a rate of increasing prevalence distinctly uncharacteristic of a "genetic" illness. Polly Murrays book "The Widening Circle" describes her battle against doctors who insisted that the Lyme epidemic was "All In Your Head" despite unimpeachable evidence to the contrary. Even after the contradiction of the "statistically almost impossible" increasing prevalence was pointed out to doctors, they still failed to respond in a scientific manner. Physicians have the audacity to produce "scholarly" papers on the mental behaviors of obstinate patients who refuse their recommendations for mental health interventions while evidence continues to mount that the entire crisis of patient confidence is being created by the inexplicable behaviors of the physicians themselves. Where are the studies that explain these repetitive failures of a "common sense" approach in doctors? No patient expects all doctors to be all knowing, but at the same time, denial of incontrovertible evidence and skepticism in the face of obvious abnormalities by a significant number of doctors is undermining the credibility of an institution whose function absolutely demands it. The errors of omission that are so consistently being made were the point of a lesson by the renowned physician, Sir William Osler who taught his medical students the importance of keen observation. A memorable example occurred one day when he showed his students a small bottle of a patient's urine and told them that "this bottle contains a sample for analysis. It is often possible by tasting it to determine the disease from which the patient suffers." He demonstrated this by dipping his finger into the bottle and tasting it, after which he instructed his students to do exactly as he had just done. The students, with some trepidation and each in turn, dipped their finger and sampled the bottle's contents, trying to determine what important lesson they were about to learn. Osler surprised his students by holding up the bottle and saying, "Now you will understand what I mean when I speak about details. Had you been observant, you would have seen that I put my index finger in the bottle but my middle finger into my mouth!" I believe that any physician who survived a course of study under Sir William would have seized upon the clues that modern day doctors overlook in favor of total reliance on their catalog of lab tests. It is the power of observation that distinguishes a diagnostician from a pill purveyor. It is training of the sort that Sir William Osler conducted which is required to stem the crisis in confidence created by those doctors whose practice includes medical malfeasance. -Erik Johnson Competing interests: None declared
More on leaky gut syndrome LGS 28 June 2004
Peter Morrell, Hon Research Associate, History of Medicine Staffordshire University, UK Send response to journal: Re: More on leaky gut syndrome LGS	My apologies to John Heptonstall for not being clearer. What I really wanted to know was whether LGS is a real entity or whether it is some 'idealised fiction.' I will try to make this a little clearer. We human beings tend to arrange the contents of our experience along a spectrum of real at one end—familiar and undisputed things like dogs and telegraph poles—to nebulous at the other end, such as electrons, God, the Milky Way. These often key concepts are at bottom essentially intangibles, unknowables and nebulosities, the existence of which can only ever be inferred at best, and which can never be confirmed directly through personal experience; we take them very largely on trust, or reject them as our personal experience dictates. And in between these extremes, reside those things of an intermediate nature being either real but never experienced or experienceable but not tangible...etc. Many of these can be justly regarded as, "idealised entities,” fictions compounded out of observed uniformities,” concepts and categories” conditioned by human aims.” [Berlin, 301] Ultimately, all such concepts comprise “a set of formulas, of imaginary entities and mathematical relationships,” [Berlin, 302] that is, things made rather than found. Therefore, when someone says: "can Flegg show me visual evidence...[for HIV] if Flegg can produce such evidence then I will be convinced. To say that 'HIV' exists even though we cannot see it with all the resources of modern technology is a bit like asking us to believe in the Holy Ghost! Flegg would do well to distinguish between science and theology," [Russell] then the answer is often no, one cannot always observe the actual thing because it is an inferred entity, more strictly a fiction that evidence points to as a probability, but which nobody has actually seen. Likewise when someone says, “your body is the temple of the Holy Ghost,” [Corinthians Ch 5, v7] these are inferred entities, disputed things, fictions, and concepts, apparently very different from dogs and telegraph poles. Perhaps the 'distinction between science and theology' that Russell requests, is far more subtle, blurred and, ahem, leaky than we suppose. Although there are fictional entities, we might consider why human reasoning cannot proceed very far without them. I will use some quotes from a book about medicine 500 years ago, but the points still remain remarkably valid. The "rational doctor breaks down the composite and confusing reality with which he is faced, and proceeds to inferences about it." [Maclean, 204] Medicine is "an art relying on probabilities, facts and inference...from effects to cause." [Maclean, 231] Medical knowledge, just like any other, "has to be translated out of the order of sense into the order of intellect...[including] intelligibilia which are not part of the perceivable natural realm [such as privation, or infinity, or the vacuum]," [Maclean, 235] but which nevertheless possess "coherence and explanatory force." [Maclean, 35] While some things clearly are "totally obvious of themselves," [Maclean, 235] others are "so hidden that man cannot understand them." [Maclean, 235] Some things "in themselves are beyond mankind's grasp; the mind of humans has to reduce everything to its own limitations." [Maclean, 235] In other words, we automatically construct external reality in our own terms, just as mice, eagles and elephants must do the same, each extracting the parts relevant to its own "station o' life," [Dickens, 375] while ignoring or not even seeing the rest. Nature in the form of "external reality is thus paradoxically both self-evident and hidden...[and] the ability of man's mind to capture it either fully or accurately through the senses or through the intellect can be doubted." [Maclean, 236] My guess therefore is that LGS is an intermediate concept, being more inferred than observed, made rather than found. Perhaps I am wrong; perhaps the gut wall has been shown to be leaky? In any case, in nature cure and in herbal medicine the concept of auto-toxication does not involve the ileum, as the LGS theory seems to claim [correct me if I am wrong], it involves the colon and it is through the colon that 'decomposing food wastes' are presumed to enter the blood stream to cause bad breath, pimples, smelly armpits and a host of other symptoms. When you consider the health effects of enemas, colonic irrigation, and the views of many naturopaths and herbalists, then it is the colon, which is implicated in auto-toxication, rather than the ileum. My question therefore is this: is John Heptonstall, or anyone else, saying that LGS definitely involves the ileum and is not the same as the naturopathic concept of auto-toxication involving the colon? If so, where is the evidence for it? Hopefully, that is now a little clearer. Sources Isaiah Berlin, Georges Sorel, in Against the Current: Essays in the History of Ideas, London: Pimlico, 1997, pp.298-302 Charles Dickens, The Pickwick Papers, 1836 Ian Maclean, Logic, Signs and Nature and in the Renaissance, the Case of Learned Medicine, Cambridge: Cambridge University Press, 2002 Alexander H Russell, Response to Peter Flegg, 21 Apr 2004 http://bmj.com/cgi/eletters/328/7438/523-b#57276, Competing interests: None declared
Re: Re: Re: Can't see the wood for the trees 28 June 2004
John P Heptonstall, Director of The Morley Acupuncture Clinic and Complementary Therapy Centre LS27 8EG Send response to journal: Re: Re: Re: Re: Can't see the wood for the trees	Sir In response to David Jameson's "Mr Heptonstall appears to have an irrational, negative attitude to the idea that someone might recover from CFS due to the placebo effect. I would suggest that it is because of attitudes like his that the state of CFS research is in such a poor state" I can assure David that I do not have a negative attitude to the idea of placebo 'cures' for any condition, but I do have a negative attitude to the idea that everyone who declares themselves 'cured' of CFS achieved their cure by placebo. I can also inform David that about 7 or 8 years ago I put a case to several bodies that funded 'research into ME/CFS' as my Clinic has a good response for ME/CFS sufferers - 'cures' and 'much improveds'. However, I was surprised to find that curing and much improving ME/CFS was not of high priority for research funds, one had to be researching biochemical aspects of the conditions to gain funding - ie. be lab-based and not 'successful' Clinic-based much to my surprise and that of a number of patients, and practitioners who had agreed to assist the project designed to cost little for the patients and for which all staff had agreed to work for little reward and to put a great deal of time in - we are that committed. Some of the staff had 'recovered' from ME at my Clinic and thereafter studied with me to become practitioners. No doubt CFS research suffers from a variety of difficulties, I suspect my attitude to placebo interventions is not one of them , not least that the main 'cures' appear to emanate from the alternative & complementary field which does not feature highly for research funds, especially as most funding is pharmaceutical company derived nowadays; with all the tax and subsidy pleasures those companies aspire to the government obviously thinks that's a better way to spend our taxes than fund research into treatments that cure disease. Regards John H. Competing interests: None declared
Re: More on leaky gut syndrome LGS 28 June 2004
John P Heptonstall, Director of The Morley Acupuncture Clinic and Complementary Therapy Centre LS27 8EG Send response to journal: Re: Re: More on leaky gut syndrome LGS	Sir In response to Peter Morrells' question re. LGS:- You could say all reality is nebulous, even dogs and telegraph poles, depending on how you wish to represent them - do we not live an illusion? Certainly disease tends to be nebulous, even the most widely researched eg. HIV-AIDS remains nebulous since it is dependent on the isolation of, and thence description of, a virus which (even after isolation) remains nebulous at certain levels due to investigatory limitation. The references I gave already in my previous response suggest that scientists have already investigated the concept of LGS and have produced a working description - as 'working' as so many medical concepts and models. From my TCM perspective and experience with ME/CFS sufferers I agree with the viability of LGS because most, if not all, ME/CFS sufferers I have treated this past 15 to 20 years show signs of 'small intestinal (SI) dysfunction' - I won't go into detail of how that is diagnosed in TCM. Food intolerances, and IBS, seem at times to create SI rather than LI dysfunction (hence medics define IBS as 'irritable' suggesting unidentifiable, guessing dysfunctional, without obvious physically identifiable signs in the LI) in my ME/CFS patients who respond rapidly to dietary change and acupuncture & moxibustion treatments involving SI 'manipulation'. People have described their IBS as feeling 'poisoned' after certain foods, distended gut, much flatulence, tending to be reversed by avoidiong certain foods (often cereals) with which they never had a problem before developing IBS/CFS/ME. They may suffer several days 'fluiness', as though having a systemic infection which relieves within 4 to 7 days, from those foods and as the food would be expected to leave their system and their immune systems restore order. Their symptoms are often like those of 'infection', but in this case (LGS like) are caused by specific dietary triggers (individualised to the person); they are not unlike the kind of symptoms experienced by a person who is found to have a physical lesion in the colon, but in many of these IBS/CFS/ME sufferers the colon shows no abnormality by endoscopy plus many IBS sufferers have normal regular stools, but have recurrent discomfort bloating and wind which seems to affect the SI mainly and at times the LI. Many of these IBS/ME/CFS sufferers appear to have contracted their condition from a vaccination - typically Hep B or Anti-Tetanus which research tends to support. Others have been prescribed anti-biotics during a viral illness and found that their recoverey was suddenly halted on taking anti-biotics leading to a downward spiral until CFS/ME is diagnosed months later. Quite a number of my ME/CFS patients were able to check dates of origin of their first taste of 'strong and unusual fatigue' early in the illness and on checking vaccination dates found either Hep B (medical workers) or anti-tetanus vaccinations were received within a week or so of the onset of a downward spiral in health to what became ME/CFS. To sum up, the idea of a damaged SI 'leaking' contents into the blood stream is not new, it is supported by research, by scientific plausibility, by signs and symptoms and patient histories, by lack of other medical explanations for IBS as defined by Western Medicine; and for me also by TCM diagnostic practices and concepts. Which part of the spectrum from 'real' to 'nebulous' LGS lies must ultimately depend on a sufferer's experience - it's 'real' enough to them. Regards John H. Competing interests: None declared
Is it any wonder GPs are confused, and are seen to have questionable perceptions of ME? 29 June 2004
Jean E Long, ME survivor unable to work PO4 9AA Send response to journal: Re: Is it any wonder GPs are confused, and are seen to have questionable perceptions of ME?	On one hand we have the ME patient community trying their best to bring doctors’ attentions to the worldwide sound and scientific research confirming the physiological aetiology of ME, and on the other hand a group of psychiatrists ignoring most of this research in order to claim ME as belonging to their own speciality. Their insistence upon the use of the term CFS and the Oxford Criteria is further proof of the lengths these psychiatrists will go to in an attempt to sell what is nothing more than an untenable theory. Whilst all this is going on ME patients are losing hope that this dire situation in the UK will change, that the games and tactics will finally come to an end, and that common sense will finally prevail. To add to their frustrations tax payers money is being spent on PACE, which by this stage in the debate must be recognised as a complete waste of such valuable funds; whilst none of this tax payers money it would seem is being used for scientific research into the causes, or the effectiveness of more applicable treatment protocols being used outside the UK. Why? Many of us have asked that the internationally recognised Canadian Definition and Guidelines on treatment be put in place in the UK and there are very good reasons for our doing so. The definition is more clear-cut and so would put an end to those patients with less specific forms of chronic fatigue being placed under the same diagnostic label as patients with ME. This would immediately invalidate the PACE trails as they stand now, so hence the reluctance on the part of Professor Simon Wessely, Dr Peter White et al. to adopt them. They would also provide our GPs with the information they need to treat us. So is refusing to adopt these guidelines fair on GPs? I think not. Lastly it would ensure that the small percentage of ME patients who have access to the new ME clinics and centres of excellence will be offered treatments that will actually help, rather than those which have already been proven potentially harmful. Competing interests: None declared
Taking responsibility for diagnosis and treatment 7 July 2004
Victoria M Loughlin, Early retirement from taeching due to illhealth PR1 0SY Send response to journal: Re: Taking responsibility for diagnosis and treatment	If there is one thing reading this debate has proved to me it is that at present the only way out of this maze is for people with CFS/ME to take responsibility for their own diagnosis and treatment. Sadly it is the nature of the illness and economic reality to make this an impossibility for many patients and so they are dependent upon what the medical profession and the NHS has to offer them. In my experience this falls far short of what may be desirable, with all investigations ceasing as soon as a diagnosis of CFS was pronounced and even routine prescriptions for symptomatic relief doled out on a strictly rationed basis. My own burgeoning health improvement after many years in a wilderness of pain, fatigue and confusion is the result of a great deal of reading, asking questions, a small number of relevent tests, a very few private medical consultations and self medication. The gentleman who suggests a new title for the illness NIME is bang right in my view. I am treating my immune system and at least one previously undiagnosed chronic infection with a herbal medicine, my hypoadrenia and hypothroidism with hormones and my pain and inflammation with herbs and simple detoxification methods. Unfortunately even these modest treatments would be out of the question without relatives who are willing to foot the bill. Victoria Loughlin http://health.groups.yahoo.com/group/ME-CFS-FMS_infections/ Competing interests: None declared
Possibility of more rapid recovery from CFS may change G.P.'s attitudes 15 September 2004
Marilyn L. McNeill, Private Practitioner The Rowans Drem East Lothian EH39 5BN Send response to journal: Re: Possibility of more rapid recovery from CFS may change G.P.'s attitudes	Dear Sir/Madame I would like to comment on the article “General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study” that appeared in BMJ 328: 1354–1356 (5 June 2004). The article concerns barriers to the management of patients with chronic fatigue syndrome, and, as it suggests, if effective medications were available for the illness it would clearly help apart from the patient’s own efforts at self-help. Stereotyping is an almost insuperable obstacle otherwise. I am a doctor who developed severe symptoms of ME/CFS early in 2000, immediately after confirmed Influenza A. The illness lasted until April of this year. I then had a rapid recovery following the use of small doses of nimodipine (Nimotop, Bayer) prescribed by a North Berwick doctor who himself had had ME for 15 years. He had undertaken self- experimentation with the medication. My GP now prescribes it for my CFS but I need it only rarely. I attended a number of concerts at the recent at the recent Edinburgh Festival. I haven’t been able to do anything like this for 4½ years and I now have things that I only dreamed of coming true. I understand exactly what it is to be stereotyped but I believe effective medication can dramatically improve the health of a person with CFS for the better and change general practitioners’ perceptions of the patient as improvements occur. Everyone feels more positive. Something can be done now. Yours sincerely, Marilyn McNeill (Dr)marilynm@medix-uk.com Competing interests: None declared