Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
Regarding the PACE Trial
- Tom P Kindlon (2 September 2007)
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NICE Guidelines fail ME
- Sue Waddle (2 September 2007)
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"CFS Guidelines" Irrelevant to Actual ME Disease
- Helen Borel, RN,PhD (4 September 2007)
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Missed chance
- Andrew Ashley (6 September 2007)
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Survey data does not support their claims
- Annette L Barclay (7 September 2007)
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Re: Survey data does not support their claims
- Giuseppe Melecci (11 September 2007)
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PACE, NICE and FINE : Patients Perspective.
- R M Cox (12 September 2007)
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WHO is relieved by NICE?
- Douglas T Fraser (13 September 2007)
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Imprudent Neglect of CFS History
- Erik Johnson (15 September 2007)
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Re: WHO is relieved by NICE?
- Giuseppe Melecci (15 September 2007)
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Re: WHO is relieved by NICE?
- Dr Speedy (22 September 2007)
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ME and Psychiatry
- Michael Morris (23 September 2007)
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SORRY South Australia
- Dr Speedy (25 September 2007)
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Actometers or pedometers should be used in rehabilitation studies in the field to check whether the interventions are actually leading to (substantial) increases in activity levels
- Tom Kindlon (30 September 2007)
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PSYCHIATRISTS SAY: CBT for ME does NOT work
- Tessa Vinicius (2 October 2007)
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ME as an inclusion of CFS
- Les O SIMPSON (3 October 2007)
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Miscommunications and Misunderstandings
- Douglas T Fraser (5 October 2007)
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Chlamydia pneumoniae infection a treatable cause of Chronic Fatigue Syndrome
- John E Tovey (24 October 2007)
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Tom P Kindlon, Unavailable for work due to ill-health Dublin, Rep. of Ireland
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A link could be added to the PACE Trial protocol reference: BMC Neurol 2007;7:6. i.e. http://www.biomedcentral.com/1471-2377/7/6 . Some comments on the trial are also available at that site. Competing interests: Assistant Chairperson (voluntary position), Irish ME/CFS Support Group |
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Sue Waddle, Spokesperson, ME Research UK ME Research UK PH1 5PP
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Only one thing is certain from the Guidelines issued last week on CFS/ME and that is that NICE have not defined what they are discussing. CFS/ME is an umbrella term which conveniently covers a host of fatigue states. What these guidelines have singularly failed to do is to address the very serious nature of the illness Myalgic Encephalomyelitis. On the issue of guidance about diagnosis,although it does recommend biomedical research and does recommend the need for informed discussion around diagnosis, there can be little doubt that the Guideline has failed those with ME/CFS. NICE ignored evidence from a significant published body of biomedical abnormalities when those abnormalities would clearly assist in diagnosis. This is indefensible, especially as that body of evidence would be invaluable in distinguishing between ME/CFS and behavioural disorders. Hard-pressed GPs will find little to make their task easier in this Guideline and much to further confuse the already confused. Competing interests: None declared |
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Helen Borel, RN,PhD, Psychoanalyst and Medical Writer 200 West 79th St., New York, New York 10024, USA
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I beg to differ with the "new" guidelines. In 1992, I wrote and published this book -- Living with and Recovering from Chronic Fatigue Syndrome: DEBILITATING IMMUNOPATHIC RELAPSING ENCEPHALOMYELITIS. (Note, this stands for DIRE.) I only used "CFS" in my title because this was the faulty (and therefore prejudicial) designation given this very serious disease that it was widely known as. THIS IS NOT A DISEASE ABOUT THE NEED FOR GRADUAL EXERCISE OR FOR TREATING A PSYCHIATRIC ILLNESS! This is a neuroimmune disorder and (just like multiple sclerosis and other multisystem diseases) you can't exercise your way out of it, nor are you mentally ill because you have it. It has been shown -- more than 15 years ago -- that probably some viral or bacterial or toxic event (most likely pesticide or other toxic chemical exposure) has caused the immune system to overactivate and to have difficulty recovering from this overactivation. Treatments must address this immune system dysregulation and the negative effects this immune chaos has on the brain and its neural branches. My book delineates these, which I discovered and detailed clearly. Nowhere does "exercise" have anything to do with getting well from this DIRE illness. The treatments are basic nursing and medical measures that seem to have been forgotten by physicians, maybe because they are not expensive. Finally, it's also important to note that any "mental illness" in people suffering with DIRE, such as depression ensues after months and years and often decades of progressively severe debilitation with pejorative diagnoses and insulting labelling. People are not first depressed, then strangely develop DIRE. (How then would one account for all the chronic depressives who do not develop this neuroimmune disease?) Progressive inability to work due to DIRE and its negative impact on finances, nutrition and socialization contributes to any sad mood states physicians may notice in these patients and to difficulty in recovering some degree of the life these patients enjoyed before being struck down with Debilitating Immunopathic Relapsing Encephalomyelitis. I hope this tired old "treatment" of "gradual exercise" and that very wrong label of "psychiatric illness" is finally dropped from characterizing these severely suffering patients -- some with long- standing symptoms akin to being endogenously chemotherapized, not for hours or days, but for months and years. Competing interests: None declared |
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Andrew Ashley, GP Bath
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Dear Editor, "NICE guidelines pave the way forward for patients and doctors." I'm afraid this is not true. They make it more difficult, instead of seperating ME from other illnesses with fatigue, NICE is just broadening the umbrella. If they would have just gone to see a few bedbound ME patients their guidelines would be helpful for me as a GP when dealing with fatigue. Now fatigue and sore throat is enough to have ME but we all know that this will mean that many patients who have something else will not receive the right treatment. I would advise GPs to use the Canadian guidelines so we can diagnose ME for which there is no cure at present and then help the others who are tired due to stress, depression and all sorts of other medical problems which we might actually be able to cure and do something about. And I can tell you know that this will make a big difference to the patients and their family. It is no wonder GPs are reluctant to diagnose ME if they are not given the proper tools to do so. A missed opportunity is all I can say, and ME patients, and especially patients who don't have ME, but will be labeled as ME patients, will suffer as a consequence. Competing interests: None declared |
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Annette L Barclay, too disabled to work but would like to very much w9 1dt
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I was disappointed to see Peter White et al trying to put a "spin" on a patient survey to cover up the very poor success rate of GET (Graded Exercise Therapy). The data from the second patient survey mentioned, simply doesn't back up their claims. White et al said that the GET failures reported in the first survey were down to “inappropriate advice or lack of therapeutic support". However, the survey shows that the 2nd group who reported positive experiences with GET were the group who had NO professional help at all. They also reported the least negative experiences. This shows that White argument about “inappropriate advice or lack of therapeutic support" to be without foundation. There were 2 patient surveys that reported that GET was harmful or negative for a large percentage of patients who tried this controversial therapy. The first survey was in 2000 and was carried out by an independent body. This was of patients from AFME the MEA, and local ME groups. The survey reported that GET made people worse or helped not at all in 61.3% of cases. Only 12.9% said that it was a “strongly positive” experience. In 2003 AFME surveyed 354 of their own subscribers using a random survey. They didn't ask the same questions as the earlier 2000/1 survey, and didn't use an independent survey company. 54 people said that they had undergone GET. They were asked if it was a negative, neutral or positive experience and given a choice of 5 types of professionals that had supervised the GET. There was also an option for "No professional". Of those who completed this survey 59% said that GET was a neutral or negative experience. Only 41% said that GET was positive. AFME did not ask them if it was "slightly or strongly positive" (as per the 2000/1 survey). In the first survey 2000 twice as many people found GET "slightly" helpful than "strongly" helpful. There is no evidence that this very weak “strongly helpful” score (2 “slightly” to every 1 "strongly”) would have changed from 2000 to 2003. AFME did not ask how well people undergoing GET were supported by the Professionals involved and what difference this support made. They were not asked about “inappropriate advice” It's wrong of White et al to blame GET failures on these factors, rather than GET itself or suitability for people with ME, over people with general fatigue. Trying a GET program with a Behavioural Specialist (i.e. like Peter White) had only the third highest percentage of positive effects. Less than the group with NO Professional involvement at all. Which knocks the “therapeutic help” argument out the window. The best percentage of positive results for GET were from people who tried a GET program with the help of a doctor (and what "doctor" means in this context isn't explained). At the time I assumed that this was their GP. In the 2003 survey, the worst type of professional for a person with M.E. to see was a Occupational Therapist, a Physiotherapist or at a Gym. ALL the respondents who tried GET with a Occupational Therapist or at a Gym reported it a negative experience. The Physio's had more mixed results but many negatives. Who trained the Occupational Therapists and Physio’s in GET and why were they allowed to do so much harm? We also don't know from the AFME survey how many people tried several different types of GET with repeated negative results and were only able to report on the latest one due to the poor design of the survey. As people with M.E. are desperate to get better they may have tried different approaches to GET over time as it has been well hyped. The questionnaire would only allow a report on one of these and I think people would put in the latest attempt. It could be argued that people with fatigue or M.E first tried the simple approach of a GET program that they devised themselves or with their GP. Then those people who could be helped by this approach (and didn't have anyone trying to push them to damaging levels of physical performance), found some benefit. Those who failed with their own program could have been referred on to see a "Professional" or a "Gym" where it was more likely that the program would be "negative" again. Those with obvious behavioural problems being referred to a Behavioural Therapist and the rest to a Physical Specialist. We simply do not know what happened and AFME didn't ask the right questions. We also don't know if what illness (ME, CFS, fatigue, TATT) the "positives" and "negatives" were even diagnosed with. The Oxford criteria for CFS was designed to cover as many people with idiopathic fatigue as possible, whilst the CDC CFS criteria and the ME description were trying to describe an illness that was not simple fatigue. The groups contain very different populations. AFME after all, wanted to change it’s name to "Action for M.E and FATIGUING ILLNESSES". Maybe the answer is that, as they widened the net for more member with "fatiguing illnesses", their data became more polarised between these different groups. So, to sum up. AFME used a different population and different questions. A small number of people had undergone GET. The data does not support the spin given by White et al in their editorial. We don't know why some people reported a positive effect and many negative. We also do not know what illness they suffered from and what regime they underwent. The first survey showed us that very few people benefited by GET to a “strongly positive” level. From the second survey we know that the majority had a "negative" or “neutral” effect and that these were treated by Professionals. The very people we rely on to give us “appropriate advice and therapeutic support”. Competing interests: Person with M.E. |
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Giuseppe Melecci, unemployes ME13 7EX
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Well said Ms Barclay. People who suffer from M.E. do not respond well either to CBT or to GET. Also out of 354 patients who were subjected to GET exercises, only 12.9% have shown a certain degree of (apparent) improvement, that is 45.66 patients. This result seems to be disappointing, considering that in the UK it is estimated that there are 300,000 people suffering from ME. Since the Government has allocated £11,000,000 to GET and CBT it seems that the individual cost of this treatment is 11,000,000: 45.66 = £240,911 per patient who has somewhat shown signs of some improvement after CBT. Also the study failed to define and quantify the improvement and to show a long term improvement in those few patients who allegedly had some benefit from CGT. Competing interests: M.E. sufferer |
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R M Cox, Unable to work. Patient respondent to the NICE Consultative Process via the MEA as Stakeholder
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Yet again those of us who adhere to a very tight definition of authentic ME, as described by criteria such as the Canadian Consensus Document, or that proposed by properly experienced clinicians such as Byron Hyde www.nightingale.ca have been sorely let down by both the recent NICE Guidelines for the illness and by the PACE and FINE trials currently being carried out. Those of us who experience the genuine neurological disease with its' myriad neuro-immune manifestations are appalled by the way in which this disease has been hi-jacked by a bunch of psychiatrists who for their own reasons insist on lumping anyone with the symptom of 'chronic fatigue' under the same umbrella as ME. The use of exercise and CBT approaches in authentic ME have already been shown to be of no value at best and further disabling at worst. The work of regarded researchers such as Martin Pall, Paul Cheney, Vance Spence, Kenny de Meilier and others who are able to prove WHY exercise is so damaging to those of us with this illness has been deliberately ignored. To the general population and to most of the medical world, it would seem that little quality research into this disabling condition has been going on. In the sense that there has been no funding provided by this Government for biomedical research (they have provided £11 million for these PACE and FINE trials and for the clinics to provide CBT and GET which few patients actually want) this is true, but there is a groundswell of entirely privately funded research in this country along with research from many other countries which is now getting very close to having a biological marker for the illness, and much is now known about its genetic profile, the immunology of the disease, the mitochondrial abnormalities, the excessive levels of oxidative stress among other parameters. Properly defined ME is a very genuine, very disabling disease. It is muddied by inappropriate diagnosis, but it is up to the individual clinician to inform themselves of how to properly diagnose given that this issue is clearly not going to be faced by Government or its' agencies in the prevailing political climate. I suggest those who have a real compassion for patients such as I, who have suffered this illness for 37 yrs but am not yet 50, browse the web pages of the earlier mentioned Nightingale site together with www.meresearch.org.uk, www.investinme.org. The latter sites both have DVD's available of recent Conferences which may be of huge educational benefit to a medical community seemingly so ill-prepared to cope with patients who have ME. Competing interests: None declared |
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Douglas T Fraser, Unable to work London W6
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"Health is a political topic, NICE is a recognised, albeit apolitical organisation, within a political environment" http://www.nice.org.uk/download.aspx?o=34648 ============================================ In their editorial of 1st September BMJ 2007; 335:411-412 ”Chronic fatigue syndrome or myalgic encephalomyelitis NICE guidelines pave the way forward for patients and doctors", Peter White, Maurice Murphy, Jill Moss, George Armstrong, and Sir Peter Spencer state that: "The uncertainty inherent in making a diagnosis of chronic fatigue syndrome (CFS) is reflected by the variety of names (such as myalgic encephalomyelitis; ME) it has been given." A particularly protracted period before reaching a conclusion may be indicative of uncertainty, the repetition of laboratory work may reflect uncertainty, the variety of tests employed might also signal doubt, and referrals to other specialists could be a sign of uncertainty. It is inconceivable that a “variety of names” signals diagnostic uncertainty. This troubling claim appears in an editorial about a subject affecting millions of lives, and perhaps the authors would welcome this opportunity to clarify precisely what it is that they wish BMJ readers to understand by this claim ? The authors continue that: "The names reflect the hope that such labels can impose some certainty where little exists" Names and labels identify things, it's quite a practical arrangement, and it usually "reflects" some kind of intelligent process. The furry little four legged purring animal that meows in the kitchen has been quite thoughtfully labeled as a CAT, and this is very useful because it helps me not to buy DOG food in Sainsbury's. The names "Iceland disease", "Akureyri disease", “Tapanui flu”, “Royal Free Disease”, "benign myalgic encephalomyelitis", "epidemic neuromyrasthenia", "atypical poliomyelitis" and "epidemic vasculitis", amongst others, "reflect" the intelligence and rationality of many individuals living in an era when great care was taken over detail and documentation in the identification of a disease entity, and it is worth reading about and learning from this pre-internet past, not only to understand the present, but to navigate the future, and avoid mistaking ‘cats’ for ‘dogs’. Interestingly, amongst discerning scientists in the field today, the name "myalgic encephalomyelitis" is undergoing a significant renaissance. However, in referring to this rich lode of instructive material, with a dismissive lash of the pen, the authors write: "The names reflect the hope that such labels can impose some certainty where little exists." Perhaps that was not their intention, and so maybe they would like to take this opportunity via the eBMJ “interactive rapid responses” to clarify this important pronouncement? In view of the authors’ uncertainty over diagnosis, surely the first port of call to facilitate a reliable diagnosis would be to the obvious: reliable diagnostic criteria. Unquestionably, the best available clinical diagnostic criteria were published in 2003 by Carruthers et al. (http://www.cfids- cab.org/MESA/ccpccd.pdf). Referring to a comparison study executed using these criteria, one expert in the field observed that: "The selection of diagnostic signs and symptoms has major implications for which individuals are diagnosed with ME/CFS and how seriously the illness is viewed by health care providers, disability insurers, rehabilitation planners, and patients and their families and friends. I hope the results of this comparison study will encourage more physicians to USE THE CANADIAN CLINICAL CRITERIA". (Leonard A. Jason, Ph D Director: Center for Community Research, DePaul University, Chicago IL Board of Directors: American Association for Chronic Fatigue Syndrome - An Overview of the Canadian Consensus Document http://www.mefmaction.net/documents/me_overview.pdf). Giving fair consideration to the beliefs Wessely S, Chalder T, White PD, Sharpe MC, Prins J, Bleijenberg G and their colleagues hold about myalgic encephalomyelitis, the authors of the Canadian Guidelines have remarked that: "There is much that is objectionable in (their) 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 (Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Pamirez G. JAMA 2001) of treatments dealt with comparable homogeneous groups since different inclusion and exclusion criteria were used in selecting the test patients and control groups". Given that medical science is mostly an international collaborative enterprise, with repercussions on public health everywhere, perhaps the authors could clarify why it is that they believe: “It is (therefore) a welcome relief that the National Institute for Health and Clinical Excellence (NICE) has just published clinical guidelines on the diagnosis and management of this disease”, when these Guidelines allow fatigue and a headache to be diagnosed as myalgic encephalomyelitis? Individuals suffer because of misdiagnosis, and medical science involving the ‘misdiagnosed’ throws up yet more misleading data, ultimately ruinous to individuals, medical research, and economies. There can be no excuse; the ground work has been laid by Carruthers et al., and yet four years later it is being destroyed in the UK and the US. Logic would dictate that individuals are trying to prevent discovery. The authors of this BMJ editorial go on to imply that "chronic fatigue syndrome" was the name "given" to name myalgic encephalomyelitis. Quote: "The uncertainty inherent in making a diagnosis of chronic fatigue syndrome (CFS) is reflected by the variety of names (such as myalgic encephalomyelitis; ME) it has been given." The authors may or may not be aware of the fact that it was the other way around. Myalgic encephalomyelitis was 'given' the name 'CFS'. Ignoring the questionable logic of the content, the authors' opening statement could, or perhaps should, read: "The uncertainty inherent in making a diagnosis of myalgic encephalomyelitis (ME) is reflected by the name (chronic fatigue syndrome; CFS) it has recently been given". Myalgic encephalomyelitis has been the accepted terminology in the UK since the 1950's (e.g. The medical staff of the Royal Free Hospital. An outbreak of encephalomyelitis in the Royal Free Hospital group, London, 1955. Brit. M. J., 2: 895, 1957; Leading Article. A new clinical entity? Lancet 1: 789, 1956; Ramsay, A.M. and O’Sullivan, E. Encephalomyelitis simulating poliomyelitis. Lancet, 1: 76l, 1956; Epidemic myalgic encephalomyelitis. Brit. M. J., 2: 927, 1957; Deisher J.B. Benign myalgic encephalomyelitis (Iceland disease) in Alaska. Northwest Med., 56: 1451, 1957; Galpine, J.F. Benign myalgic encephalomyelitis. Brit. J. Clin. Practice, 12: 186, 1958; The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia E.D. Acheson, D.M., M.R.C.P. American Journal of Medicine, Vol. 569, Pages 569–5951959; amongst many other papers and references through subsequent decades). The 1988 misnomer of 'chronic fatigue syndrome' (Chronic Fatigue Syndrome: A Working Case Definition Holmes Kaplan et al Ann Intern Med. 1988; 108:387-389) is a relatively recent American term about which Professor Anthony Komaroff remarked in 1995: "I share your views on CFS, which has not only become a waste-basket, but because fatigue is a universal experience, and it trivialises the illness. I think CFS is a terrible name, and I'm partly responsible for it." (http://home.vicnet.net.au/~mecfs/general/komaroff.html ). Similarly, in 2007, Dr Nancy Klimas has remarked that: 'Unquestionably, the name CFS has done harm both to patients who are dismissed as merely chronically fatigued and to the credibility of professionals who are attempting to understand and treat a complex illness that involves neuroinflammation, autonomic and immune perturbations, and hormonal dysregulation' ( Nancy G. Klimas, M.D. President, International Association for CFS/ME (IACFS/ME) IACFS/ME Newsletter - Spring 2007 http://www.aacfs.org/p/1.html). Professor Leonard Jason expressed his concerns: "In 1988, a group of researchers, many of whom were at the CDC, coined the name chronic fatigue syndrome (CFS) and developed a case definition (Holmes et al., 1988). Most patients feel the term CFS trivializes the seriousness of the illness (Name-Change Survey Results, 1997; Friedberg & Jason, 1998) and has contributed to health care providers having negative attitudes towards those with this syndrome (Anderson & Ferrans, 1997; David, Wessely & Pelosi, 1991; Green, Romei & Natelson, 1999; Jason, Richman et al., 1997; Shlaes, Jason & Ferrari, 1999). "Malaria means bad air. Lyme is a town. Ebola is a river. The name poliomyelitis is not required to change to polio-opathy after the acute phase. In addition, the name Myalgic Encephalomyelitis has a 50 year history in the medical literature and it has been formally classified by the WHO as a neurological disease in the ICD since 1969 and remains classified in the current ICD as a neurological disorder (ICD 10 G93.3). In contrast, Myalgic Encephalopathy is not defined as a specific condition and has no ICD status. Many advocates believe that we would lose that 50 years of historical lineage if we endorsed the term Myalgic Encephalopathy. It appears that the term ME/CFS is now being used by groups throughout the world. Controversy continues on which case definition to use, and what version of ME to use. Many feel that there is considerable benefit of maintaining the name Myalgic Encephalomyelitis, which is the most consistently used and most widely recognized name worldwide, with an established neurological WHO ICD code and a well documented history of outbreaks along with extensive epidemiological investigations. Researchers and clinicians need to be aware of the strong sentiments that patients have for Myalgic Encephalomyelitis, which is a historically correct (Ramsay, 1981) and has been used internationally (Hyde, Goldstein, & Levine, 1992).” ('Issues Involved in Name Change Recommendations Leonard A. Jason, Nicole Porter, Jennifer Okasinski, & Mary Benton - DePaul University http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0705B&L=CO-CURE&D=0&F=P&I=- 3&P=3529&F=) However, the authors of this BMJ editorial state that: "We remain unsure of.... how to classify it". Fortunately, the National Institute for Health and Clinical Excellence (NICE) has made the matter of classification unambiguous and transparent: "The ICD-10 classification has been used as a basis for the new Institute classification directed at the informed reader... The ICD-10 classification is used for the recording of diseases and health related problems (i.e. the diagnosis or reason for a patient episode of health care). The World Health Organisation (WHO) produces the classification and ICD-10 is the latest version". "NICE Classification - Central Nervous System” (=) “ICD-10 classification (Department of Health) - Diseases of the nervous system”. ( http://www.nice.org.uk/download.aspx?o=36601) NICE have placed their Guideline for myalgic encephalomyelitis under "Central Nervous System" (NICE): i.e. "Diseases of the nervous system" (WHO ICD-10). “Central nervous system >> Completed guidelines>> Chronic fatigue syndrome / Myalgic encephalomyelitis; Dementia; Epilepsy; Multiple sclerosis; Parkinson's disease” (http://guidance.nice.org.uk/topic/centralnervoussystem) The classification of myalgic encephalomyelitis (M.E.), the subject of these NICE Guidelines, can be found in the World Health Organisation's International Classification of Diseases (ICD-10) in 'Chapter VI : Diseases of the nervous system (G00-G99)' subcategory 'Other disorders of the nervous system (G90-G99)' under G93 'Other disorders of brain' at 'G93.3 Postviral fatigue syndrome / Benign myalgic encephalomyelitis'. Perhaps the authors might clarify precisely why "We remain unsure of.... how to classify it” via this eBMJ ‘interactive’ facility, and take the opportunity to elaborate on their apparent interest in reclassifying myalgic encephalomyelitis? Some insight into previous attempts at reclassification can be found in Dr Jonathan Rutherford's April 2007 essay "New Labour and the end of welfare" at: http://www.lwbooks.co.uk/journals/soundings/debates/36rutherford.html . Dr Rutherford explains: "Specific illnesses were targeted in order to discredit the legitimacy of claims. The industry drew on the work of two of the Woodstock conference participants, Professor Simon Wessely of King's College and Professor Michael Sharpe of Edinburgh University, in an attempt to reclassify ME/CFS as a psychiatric disorder. Success would allow payouts to be restricted to the 24 month limit for psychological claims and save millions of dollars. By 1997 Provident had restructured its organisation to focus on disability income insurance as its main business. It acquired Paul Revere, and then in 1999 merged with Unum under the name UnumProvident". As a former director of the Drug and Alcohol Services at Rozelle Hospital in Sydney, the psychiatrist Dr Jean Lennane highlighted the reasons why psychiatry can so easily represent a danger to members of the public : "There are hired guns in other medical specialties, but they appear to be most frequent, and most vicious, in psychiatry - probably because, as a ‘soft’ science, lacking the hard evidence of X-rays and tissue examination, psychiatry is more open to opinions, no matter how outrageous" (http://www.uow.edu.au/arts/sts/bmartin/dissent/documents/Lennane_battered.html). The authors of this editorial state: "We remain unsure of its causes, pathophysiology, or how to classify it, but there are many other remediable conditions of which this is also true." The authors’ claim here is that myalgic encephalomyelitis is curable (‘remediable’). However, it would be most interesting to hear from the authors why they have included the following irrelevancy: "We remain unsure of its causes, pathophysiology, or how to classify it but there are many other remediable conditions of which this is also true.” ? NICE state in their Guideline: "There is no known...cure for CFS/ME." (http://guidance.nice.org.uk/CG53/niceguidance/word/English/download.dspx) The General Medical Council make it clear that: "You must not make unjustifiable claims about the quality or outcomes of your services in any information you provide to patients. It must not offer guarantees of cures, nor exploit patients’ vulnerability or lack of medical knowledge. You must not put pressure on people to use a service, for example by arousing ill-founded fears for their future health." http://www.gmc- uk.org/guidance/good_medical_practice/probity/information_about_services.asp As public health employees it is their duty and responsibility to explain how they have discovered that myalgic encephalomyelitis is now curable ("remediable"), and to disclose where this has been published. Hopefully they will take this opportunity to discharge their obligations to the public and medical science by forwarding details of this cure to the BMJ rapid responses? In case there might be some misunderstanding, perhaps the authors will take this opportunity to publicly declare that they acknowledge myalgic encephalomyelitis to be a physical disease, as opposed to a "mental" one, or any sly euphemism for "mental" ( i.e. "biopsychosocial”, the camouflage appropriated by some psychiatrists to publicly avoid saying “psychosomatic”) ? The authors declare: "It is (therefore) a welcome relief that the National Institute for Health and Clinical Excellence (NICE) has just published clinical guidelines on the diagnosis and management of this disease". With respect to the alleged “management of this disease”, before the CBT-GET MRC/DWP funded trialists Sharpe M, Wessely S, White PD, Chalder T, and others began their "collaboration" with the charity Action for M.E.*, a careful and incisive analysis** of four surveys involving 3074 members of the public affected by M.E. revealed that the "Least Effective Strategy was Cognitive Behavioural Therapy and Most Harmful were Graded Exercises" (D.M Jones MSc. 2001). (*“The major innovations in this application include close collaboration with Action for ME” - The 2002 PACE Trial MRC Application http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0404B&L=CO-CURE&P=R3461&I=- 3) (**http://www.25megroup.org/Campaigning/Gibson%20Inquiry%20Information/Doris%20Jones%20Submissions/Nancy%20Turnbull%20letter.doc) Following their “collaboration”, and in contrast to these professionally conducted surveys, another type of survey was brought into service (“although a later survey showed that this was related to inappropriate advice or lack of therapeutic support “. See: “Survey data does not support their claims” 7 September 2007 Annette L Barclay http://www.bmj.com/cgi/eletters/335/7617/411#176155). With regard to Cognitive Behavioural Therapy, Professor Philip Johnson-Laird of Princeton University states that: "The (CBT) theory's fundamental tenet about faulty reasoning has no robust support." (1) Professor William Epstein of the University of Nevada comments: 'Cognitive theory, for all its deficiencies, has not inspired effective clinical practice. As noted in earlier chapters, the best research offers no credible evidence of any successful psychotherapy for any condition. In just this way, both the theory and the practice of CBT are social languages, that is, "schemas" of social meaning, a Wittgenstein language- game, a universe of discourse. Failing as science, cognitive theory and cognitive-behavioral treatments become interesting as social phenomena of belief—it is fascinating to speculate why contemporary culture accepts the metaphysics of CBT rather than Behavioral Therapy or psychodynamic therapy, or for that matter Christian Science, colonic irrigation, or phrenology." (2) Dr Robert Fancher of New York University relates: "Beck and his allied cognitive therapists, in my view, are to cognitive science somewhat like the nerve doctors of the nineteenth century were to the emerging science of neurology: They draw an aura of authority from an emerging science that actually has yet to shed much light on psychopathology or its alleviation. When Helmholtz showed that the nervous system involves electrical charges, it created an atmosphere in which George Beard and others could make up myths about nerve force and convince people to submit to being shocked. As cognitive science began to show the importance of cognition in how we experience the world, the atmosphere was right for Beck and his allies to promulgate their own myths about thinking." (3) Given the above, it would be interesting to know why these Guidelines are described as a “welcome relief” in this Editorial, when they have been carefully considered, analyzed, and unimpeachably deemed "unfit for purpose” by all the relevant charities and public groups, and comprehensively dismissed by relevant scientists and clinicians. It must surely be the first occasion anyone has described a NICE Guideline as a “relief”. Douglas T Fraser (1) Johnson-Laird, Philip N (2006). How We Reason. Oxford University Press. ISBN 978-0198569763. (2) Psychotherapy as Religion The Civil Divine in America William M Epstein University of Nevada Press A Reno & Las Vegas 2006 (3) Cultures of Healing: Correcting the Image of American Mental Health Care Robert T. Fancher ISBN 0-7167-2383-2 (hbk.) 1995 by W. H. Freeman and Company Competing interests: None declared |
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Erik Johnson, n/a Incline Village NV 89450
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The proponents of various reinterpretations of Chronic Fatigue Syndrome appear concertedly neglectful that CFS has a verifiable history which can be traced back to a very specific time and place - and a particular pivotal phone call made by Dr Peterson which set the entire process in motion. It could have been different. The CDC might have responded to any of a number of different doctors who were reporting the mysterious illness across the USA, but as it happened, Lake Tahoe seemed like a more desirable place to conduct an investigation. By such quirks is history determined. The initial identification of the epidemic to the direct creation of the partial symptom collation which was called CFS can be traced in an unbroken chain of events performed by specific people who are still accessible. There is no need for any confusion about what CFS orignally was meant to describe, because the story is accurately depicted in Osler's Web, reiterated by Dr Petersons contribution to the Canadian Consensus Guidelines, and the individuals involved are mostly still alive, and able to answer anyone who cares to ask about their experience. When a group of people is selected to become prototypes for a syndrome, does it not seem spectacularly imprudent to conspicuously ignore them and turn the illness into something else? -Erik Johnson
Competing interests: None declared |
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Giuseppe Melecci, unemployed, due to M.E. unemployed due to M.E.
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Who is relieved by NICE? Probably the government and the other socio-political forces which do not see the usefulness of treating, or trying to treat, these conditions. In my opinion, the reasoning behind the guideline published by Nice is contradictory. First, NICE states that the causes which trigger these types of syndromes are unknown. Although this is true of many conditions, it does not stop doctors from offering cures and treatments. The existence of a disease is not subjected to doctors' will, neither is its cure, neither doctor’s acceptance nor awareness of its existence. By now, after thousands of years of the existence of doctors’ medicine, doctors should be aware that, in medicine, today’s revealed truth is tomorrow’s heresy. It seems that Nice guidelines were formulated under the this axiom : "E.M. does not exist, it is an imaginary illness, which exists only in the minds of the E.M. / sufferers, and therefore any clinical investigation is totally unnecessary. It is self-explanatory" Then the guidelines suggest to proceed as follow: 1- To exclude all symptoms and all clinical findings, chemical abnormalities etc., which can also be seen in other syndromes/conditions, to exclude all infections, co-morbidity, etc. which can be present. 2- Also the clinicians will have to limit the clinical investigations to a simple, basic, blood test and nothing else. 3- Then, after having excluded any symptom, any biological abnormality, known to mankind, the clinicians should proceed with the formulation of "mental illness" by using mental descriptors listed in the appendix. Comments about Nice guideline: 1 -Many symptoms and abnormal clinical findings are commonly present a huge amount of diseases. To exclude a symptoms or a disease from the differential diagnosis can be dangerous. To exclude "all" symptoms and diseases from a hypothetical diagnosis, simply because they can be also present in other conditions, also means to exclude the existence of symptoms and conditions. Ultimately, this could mean that there are no biological diseases. Then, having denied the existence of certain biological diseases, simply because they might have symptoms and biochemical abnormalities which, can be found in other diseases, the doctors will have to formulate the diagnosis of mental illness by applying mental "descriptors", which are universal feelings, and they are present in all humans, all the time. Therefore, when examining the biological aspect: Nice suggests to eliminate all physical causes, chemical abnormalities, symptoms etc, which can be also present in order physical conditions. This process will excludes the physical condition of ME. Then Nice suggests to apply at least two mental descriptors, which are common and present every person, to establish that ME is indeed an esclusively mental illness. Therefore, two different and opposite type of considerations are used for the diagnosis of ME. A)Total exclusion of physical conditions/symptoms etc, of all biological “descriptors” which can be found in other biological diseases. B)Inclusion of universally common “mental” descriptors (but I would say universally common human feelings) to ascertain with absolute certainty the existence of ME as a mental disease. A disease which is only mental. Point A contradicts B and vice-versa. This type of method is typical of “Spanish Inquisitions”, which have pestered Europe during the Middle Ages. NICEs approach has nothing to do with the scientific method. Guidelines like this are neither scientific, nor doctrinal. At best they are an example of the most hideous type of quackery. In spite the fact that NICE et Al deny their biological existence, M.E. diseases have been spreading all over the world in an epidemiological pattern which seems to be more indicative of an infective nature, rather than a mental one. Furthermore, it seems that this diseases are spreading at increasing rates. The very concept of mental disease varies from time to time in a given society, and also from society to society. Traditionally, in certain oriental societies the concepts of mental disease, as it is construed in the West, did not exist. For instance, in traditional Chinese Medicine “depression” is a dysfunction of the meridian of the liver. I would suggest to the NICE people to concentrate first on the physical before focusing on the metaphysical. For the metaphysical we already have priests. Competing interests: M.E Sufferer |
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Dr Speedy, GP ME Place of work: MY BED.
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Many things have already been said, but I would like to take this opportunity to add a few things: The recently finished Gibson Enquiry states that: “In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognising ME as a physical illness in a Private Members Bill, the ME Sufferers Bill, in 1988.” Furthermore it mentions that “The WHO (World Health Organisation) in Geneva holds an internationally recognised classification that ME is a neurological disease." And in February 2004, the then Health Minister (Lord Warner) made it very clear, in a formal written acceptance, "that the UK ACCEPTS the World Health Organisation classification of ME as a neurological disorder.” And now if you keep that in mind and just read the NICE guidelines on ME again DEAR MR EDITOR. More than a hundred pages and NOWHERE do they mention that ME is a NEUROLOGICAL illness. NOWHERE AT ALL. Now I also have a question for all the people who have written excellent responses on this page. I have started a BLOG: http://niceguidelines.blogspot.com/ Is it alright if I would use some of your comments on my BLOG?? If not or if you have any suggestions, please let me know. My email address is on the right hand side of my Blog. All the patients and carers for patients with ME, all the best. Can I take this opportunity to thank all the doctors who are working hard and trying to help us. And for Mr NICE, maybe go and visit a few patients with Severe ME, I'm sure you will get a totally different view and you will understand why the Canadian and Australian guidelines are so much better and also so much more helpful to get the diagnosis right. Because remember, people with ME we can't cure, but the many people who haven't got ME, see also professor Mirza's response on http://www.bmj.com/cgi/eletters/335/7617/446#top, who wrote that 90% of the patients he sees with a diagnosis of ME have something else with fatigue, we can ACTUALLY TREAT. And that sounds a lot better I can assure you. Competing interests: Bedbound GP with ME. |
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Michael Morris, Retired Psychiatrist Wellington, New Zealand
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"The uncertainty inherent in making a diagnosis of chronic fatigue syndrome (CFS) is reflected by the variety of names (such as myalgic encephalomyelitis; ME)." Many people who have responded, have mentioned the Canadian and Australian guidelines; both were unfortunately not used by NICE at all. A shame really, if you see what an excellent tick list they have produced to enable doctors to (almost) rule this uncertainty or difficulty out. I say almost, because there is no medical condition were we, as doctors, get the diagnosis right all the time. The other thing I am a bit surprised about, is that the Editorial is written by a professor in psychiatry and the second article in the same BMJ about ME and NICE was written by another professor. When I Google a bit, this is what I find on his site about him: "The Department of Health Sciences at the University of Leicester is a research-led department with established strengths in epidemiology, medical statistics, social science, public health, primary care, health services research and PSYCHIATRY." All really NICE, but why wasn't someone like Dr Speight the Paediatrician, who has specialised in ME for more than twenty years, or Dr Chaudhuri, the neurologist, who also specialises in ME (and a few other neurological diseases) and who both acknowledge the fact that ME is a neurological disease, as Classified by the WHO, not asked instead to write about ME??? It would have given a much more balanced view if both a Neurologist and a psychiatrist would have written about this subject which is deemed by many as a controversial disease, just as we did with MS for example, when it was still called Hysteria. Even though I, and many others, think after reading the splendid psychiatric guidelines about ME by Dr Stein, that the psychiatrist ONLY has a role in this chronic neurological disease if patients develop a depression or so alongside their ME. Competing interests: We as psychiatrists should spend more time helping patients with a mental health problem instead of wasting valuable time and resourches on a neurological illness. |
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Dr Speedy, GP with ME Place of work: my bed.
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Can I please rectify my comments. And Dr Morris, the psychiatrist, has asked me to do the same on his behalf, that when we mentioned the Australian guidelines, this should have been the SOUTH Australian Guidelines (2004), these are available at: http://sacfs.asn.au/download/guidelines.pdf Sorry about the mistake. Dr Speedy. Competing interests: Bedbound GP with ME |
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Tom Kindlon, Unavailable for work due to ill-health Dublin, Rep. of Ireland
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The authors make reference to the PACE trial [1], a major trial in the area. It seems particularly curious that this trial will use actigraphy watches before the patients start the trial, but will not use them again on the patients during or at the end of the trial. This would give information on whether the patients are increasing their total activity levels or simply doing the activity that is part of the trial in the place of other activity they used to do, but which they have cut down on or cut out altogether. This is important given previous studies in the area. For example, one study [2] "using a 26-session graded activity intervention involved gradual increases in physical activity" found that "from baseline to treatment termination, the patient’s self-reported increase in walk time from 0 to 155 min a week contrasted with a surprising 10.6% decrease in mean weekly step counts." Another study [3], investigating CBT this time, is regularly quoted as having showing the effectiveness of CBT for CFS. However if one examines the actometer data from this study from the group given CBT, the increases in activity were minimal [4]. For instance, the baseline average was 67.9, which increased to 68.8 after treatment and to 72.2 at follow- up. Approximately 4 points. Not unlike the medical care controls, who went from 64.9 to 68.7 in the same period. Given the costliness of the trial - over £3m (of UK taxpayers' money) - it is disappointing that the PACE Trial is not using objective outcome measures which were previously recommended in a review of CFS interventions [5]: "Outcomes such as "improvement," in which participants were asked to rate themselves as better or worse than they were before the intervention began, were frequently reported. However, the person may feel better able to cope with daily activities because they have reduced their expectations of what they should achieve, rather than because they have made any recovery as a result of the intervention. A more objective measure of the effect of any intervention would be whether participants have increased their working hours, returned to work or school, or increased their physical activities." Perhaps it is not too late for this data to be collected from some participants? [1] White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; on behalf of the PACE trial group. Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurol 2007;7:6. http://www.biomedcentral.com/1471-2377/7/6 [2]. Friedberg, F. Does graded activity increase activity? A case study of chronic fatigue syndrome. Journal of Behavior Therapy and Experimental Psychiatry, 2002, 33, 3-4, 203-215 [3]. Prins JB, Bleijenberg G, Bazelmans E, et al. Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial. Lancet 2001; 357: 841-47. [4]. Van Essen, M and de Winter, LJM. Cognitieve gedragstherapie by het vermoeidheidssyndroom (cognitive behaviour therapy for chronic fatigue syndrome). Report from the College voor Zorgverzekeringen. Amstelveen: Holland. June 27th, 2002. Bijlage B. Table 2. [5] Whiting P, Bagnall A.-M., Sowden AJ, Cornell JE, Mulrow CD, Ramirez G (2001). Interventions for the Treatment and Management of Chronic Fatigue Syndrome: A Systematic Review. JAMA 286: 1360-1368 Competing interests: None declared |
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Tessa Vinicius, GP Amsterdam, Netherlands
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NICE says CBT works for ME, and they say that is evidence based. Apart from that many patients have been saying that it doesn't work, there have also been many psychiatrists who have done the same. Dr Stein from Canada has been mentioned, but in a recent article in The World Journal of Biological Psychiatry, April 2007, Dr Sanders and Dr Korf, from a psychiatric department in Groningen, The Netherlands, reported the following: "The psychiatric and psychosocial hypothesis DENIES the existence of CFS as a disease entity." Now this reminds me very much of the NICE guidelines; who don't even mention the WHO listing of ME as a neurological illness. But please read on, because these psychiatrists have a lot more interesting things to say: "In CFS cognitive behavioural therapy is most commonly used. This therapy, however, appears to be INEFFECTIVE in many patients. The suggested causes of CFS and the divergent reactions to therapy may be explained by the LACK of recognition of subgroups. IDENTIFICATION of subtypes may lead to MORE EFFECTIVE therapeutic interventions." I have put these words in capitals, so it is easier to read, and as this appeared in April, NICE should have known about it. I would think that the best way forward, would be a radical revision of the NICE ME guidelines, and to do what the Canadians did, and what these psychiatrists have now advised to do as well. Separate ME from other illnesses with fatigue, so you can offer those others proper treatment, and you can start looking for a cause and hopefully a cure for ME. Competing interests: None declared |
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Les O SIMPSON, retired experimental pathologist Dunedin, New Zealand 9077
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None of the many spirited responses to the White et al editorial have drawn attention to the urgent need to dissect ME from the all-embracing concept of CFS. It seems incomprehensible that there has been a multiplicity of guidelines produced for the management of a disorder for which there is no accepted aetiology or pathophysiology. Possibly, to a major extent, this simply reflects the rejection of earlier concepts. In the second edition of his book, Ramsay noted that the clinical identity of the ME syndrome was based upon three distinct features. "1. A unique form of muscle fatigability whereby even after a minor
degree of physical effort. three, four or five days, or longer, may elapse
before full muscle power is restored. (NB. Strenuous activity changes the
shape populations of red cells in both healthy and unwell subjects.)
Ramsay discussed the clinical features of ME under three headings.
(NB It is rare for remissions to be mentioned let alone discussed and no guideline provides an explanation of their happening. A short paper titled, "The implications of remissions in ME," was quickly rejected by the BMJ.) 2. Circulatory impairment. This was manifested as cold extremities and facial pallor. 3. Cerebral dysfunction. The cardinal features were the impairment of memory and the power of concentration, plus emotional lability. It seems strange that Ramsay did not consider that the cerebral and muscle dysfunction might be related causally to the circulatory impairment, as it seems that this could be the key factor in the pathophysiology of ME. A major problem relating to acceptance is that the problems concern altered blood rheology - and blood rheology is not taught in medical schools. My work indicates that ME is a dysfunctional state resulting from inadequate rates of delivery of oxygen and nutrient substrates, due to impaired capillary blood flow, to maintain normal tissue function. Some of the background to this claim is summarised below. In 1986 we reported that ME blood filtered poorly (1) and in the following year reported similar findings with regard to MS blood. In addition MS blood viscosity was increased and changed red cell shapes were observed by scanning electron microscopy.(2) A study which showed that the red cells of healthy animals and humans could be classified into six different shape classes (3) was followed by a report that ME blood contained high levels of cup forms, which would help to understand the poor filterability of ME blood.(4) The results from a further 99 cases were presented at the Cambridge Symposium in 1990. In 1992, New Jersey Medicine published an article relating to idiopathic chronic fatigue in which I pointed out that individuals who by chance had smaller than usual capillaries would be at risk of developing chronic sickness after exposure to an agent which changed the shape populations of red cells.(5) The implications for ME were discussed in a 1997, invited paper titled, "Myalgic encephalomyelitis (ME):a haemorheological disorder manifested as impaired capillary blood flow."(6) In 2001 we reported the results from red cell shape analysis of more than 2100 blood samples from members of ME groups in four countries.(7) It should be noted that SPECT scans show the expected effects of shape- changed, poorly deformable red cells in reducing cerebral blood flow in regions which by chance have smaller than usual capillaries. It has been reported that SPECT scans in three different psychiatric disorders showed reduced blood flow in different regions of the brain, so it could be expected for psychological/psychiatric problems to emerge in some ME people as a part of their dysfunctional state. References. 1.Simpson LO et al. Pathology 1986;18:190-2. 2.Simpson LO et al. Pathology 1987;19: 51-5. 3.Simpson LO. Br J Haematol 1989;73:561-4. 4.Simpson LO. NZ Med J 1989;102:106-7. 5.Simpson LO. NJ Med 1992;89:211-6. 6.Simpson LO. J Orthomol Med 1997;12:69-76. 7.Simpson LO et al.J Orthomol Med 1997;12:221-6. Competing interests: None declared |
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Douglas T Fraser, n/a London W6
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Professor Peter White of St Bartholomew's Hospital rightly points out that "the history of this field has been littered with miscommunications and misunderstandings". Professor Stephen Stansfeld of St Bartholomew's Hospital communicated in 2004 that (1): "The interface between physical and mental illness (is) typified by Chronic Fatigue Syndrome. On the interface between physical and mental illness, research continues into chronic fatigue syndrome and the development of treatment trials led by Dr Peter White". Professor John Garrow, a consultant physician at St Bartholomew's Hospital, communicated in 2005 that (2) "the most valuable message I gained from the second session was the observation by Professor Peter White (Psychological Medicine, St Bartholomew's Hospital) that patients with chronic fatigue syndrome (CFS, or ME) have a worse prognosis if the diagnosis they are given is ME than if it is CFS. He concludes that chronic fatigue implies a physiological state that the patient may overcome by suitable exercises, whereas ME implies a viral disease of the brain and muscles over which the patient has no control." In their 2007 public communication from the St Bartholomew's Hospital Chronic Fatigue Syndrome/ ME Service website, there is an article entitled: 'Expectations for Outcome' (3). After removing some slightly extraneous material for the sake of clarity, it basically communicates that: "We have found that three-quarters of our patients with CFS/ME significantly improve or recover with treatment in our clinic; research has suggested that a quarter recover their health and a further half significantly improve. Some of those who recover don't actually recover, some don't even improve, and some should go elsewhere". In 2007 Jason and Brown stated that (4): "Relatively few patients with CFS completely recover from the illness, with a recovery rate of 0-6% and increased disability in 10-20% of patients over time", while the CDC state (5) : "Improvement rates varied from 8% to 63% in a 2005 review of published studies, with a median of 40% of patients improving during follow-up. However, full recovery from CFS may be rare, with an average of only 5% to 10% sustaining total remission". Assuming that the Jason, Brown and CDC figures are not unreasonable, the St Bartholomew's Hospital Chronic Fatigue Syndrome/ ME Service website communication should perhaps then read: "We have found that three-quarters of our patients with CFS/ME significantly improve or recover with treatment in our clinic; research has suggested that very few recover, some improve and a significant number get worse. Whilst in our service, some of those who recover don't actually recover, some don't even improve, and some should just go elsewhere". Chia and Chia found that (6) "Enterovirus VP1, RNA and non-cytopathic viruses were detected in the stomach biopsy specimens of CFS patients with chronic abdominal complaints. A significant subset of CFS patients may have a chronic, disseminated, non-cytolytic form of enteroviral infection, which could be diagnosed by stomach biopsy". Dr Jonathan Kerr commented that (7) "the role of enterovirus infection as a trigger and perpetuating factor in CFS/ME has been recognized for decades...however, several negative studies combined with the rise of the psychiatric 'biopsychosocial model' of CFS/ME have led to a diminished interest in this area...the importance of gastrointestinal symptoms in CFS/ME and the known ability of enteroviruses to cause gastrointestinal infections, led John and Andrew Chia to study the role of enterovirus infection in the stomach of CFS/ME patients...these intriguing data for which there is ample supporting data strongly suggest a new and hitherto unrecognized disease mechanism in CFS/ME patients, which in my opinion, could trigger and perpetuate this disease...The role of EV infection of the stomach in the pathogenesis of irritable bowel syndrome also needs to be clarified in light of these results." Referring to the 'biopsychosocial model' which has distracted scientific research and funding into the disease, PACE trialist and Professor of Cognitive Behavioural Therpay Trudie Chalder insightfully communicated that (8): "It is theoretical and it doesn't lead us anywhere". More precisely, the psychiatrist Dr Niall McLaren wrote (9): "In practice, if we want to know whether Engel's biopsychosocial model is truly a model, or just a case of wishful thinking, then a simple test will decide the issue. Try making, say, a prediction about a man's psychological state from his biological data, or vice versa. Or perhaps try to predict wholly from sociological data which girls will develop post-partum mental disorders as young women or psychoses in old age. Since nothing like this can be done, Engel's 'model' is not a model in any interesting sense of the term" and (10): "In a word, the officially-endorsed biopsychosocial model is pure humbug, i.e. (some)thing that tricks or deceives; nonsense, rubbish, just because it does not exist." Hopefully, the recent advent of the internet (11) should help clear up any "miscommunications" and "misunderstandings". Douglas T Fraser (1) Department of Psychiatry, Barts and the London UK http://tinyurl.com/2ac2zl (2) http://www.healthwatch-uk.org/newsletterarchive/nlett58.htm (3) http://www.bartscfsme.org/expectations.htm St Bartholomew's Hospital Chronic Fatigue Syndrome/ ME Service: ('view source' - "Chronic fatigue syndrome, ME, London, St Bartholomew's Hospital, CBT, Peter White") - "Expectations for Outcome - We have found that three-quarters of our patients with CFS/ME significantly improve or recover with treatment in our clinic; research has suggested that a quarter recover their health and a further half significantly improve. For some people recovery may not necessarily mean a return to their previous lifestyle, if this contributed to them becoming ill in the first place. Some patients may not improve whilst in our service, but we would expect to help them to cope better with their illness and manage symptoms more effectively. Some patients may find other approaches to managing their ill health more helpful than those we provide here". (4) Functioning in individuals with chronic fatigue syndrome: increased impairment with co-occurring multiple chemical sensitivity and fibromyalgia Molly M Brown and Leonard A Jason Department of Psychology, DePaul University, Center for Community Research, Chicago, IL, USA Dynamic Medicine 2007 http://www.dynamic-med.com/content/6/1/6 (5) http://www.cdc.gov/cfs/cfsbasicfacts.htm (6) http://press.psprings.co.uk/jcp/september/cp50054.pdf Chronic Fatigue Syndrome is associated with chronic enterovirus infection of the stomach -Journal of Clinical Pathology Sept 13 2007 (7) Enterovirus infection of the stomach in Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) Jonathan R Kerr St George's University of London J Clin Pathol.14 September 2007.http://jcp.bmj.com/cgi/content/abstract/jcp.2007.051342v1 (8) Page 15 - "Biopsychosocial Medicine An integrated approach to understanding illness" Edited by Peter White, Department of Psychological Medicine, St Bartholomew's Hospital, London, UK April 2005 OUP (9) www.futurepsychiatry.com/rev_thesis/Rev%20Chapter%207.doc (10)McLaren N. The biopsychosocial model and scientific fraud. Paper presented to annual congress, RANZCP, Christchurch May 2004 available from the author at jockmcl@octa4.net.au (11) http://en.wikipedia.org/wiki/Internet#Growth Competing interests: None declared |
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John E Tovey, Consultant Pathologist Retired
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The Editor British Medical Journal CHRONIC FATIGUE SYNDROME OR MYALGIC ENCEPHALOMYELITIS In your Editorial (BMJ 2007; 335: 411-2), relating to the NICE clinical guidelines which appeared later in the Journal, you state “We remain unsure of the causes”. In the guidelines also there is no mention of the possibility of an infective cause, or of the possible role of antibiotics in the treatment. NICE remarks that the attending physician does not need to look for evidence of bacterial or viral infection unless there has been clinical evidence of such an infection. However, such evidence can be so mild as to escape mention by the patient. There is evidence in the literature (1,2,3,4) and considerable anecdotal evidence (See website www.Cpnhelp.org) that Chlamydia pneumoniae (Cpn) infection may be the cause in some cases of Chronic Fatigue Syndrome and of the linked syndrome Polymyalgia Rheumatica (Fibromyalgia), and also that a trial course of antibiotics is worthwhile(3,4). Cpn infection is common and frequently involves more than one member of the family. It exists in two forms. In the initial stage it is transmitted in an extra cellular form by coughing and may give rise to flu -like attacks, separated by weeks of continual coughing, often resulting in chronic laryngitis. In the later stage it changes to being an intracellular infection, which may be asymptomatic, persisting for life, or may give rise to symptoms. In the intracellular form the organisms, coccal in shape, multiply within vacuoles; their cell walls are deficient. They act on mitochondria, depriving them of ATP; this curtails production of energy, resulting in symptoms dependent on the cells affected - in brain and muscle cells, this could result in Chronic Fatigue Syndrome and in the CNS result in Multiple Sclerosis(5). If present in an inflamed area such as in muscles, it can increase the degree of inflammation by up to 5 times, thus causing painful myalgia. Because its cell wall is deficient, the antigenic response is low giving rise to only minimal levels of antibodies. In consequence; serological tests for diagnosis are unreliable at this stage. This would explain the negative serology in some reports(6). Treatment with antibiotics is difficult because drugs have to penetrate the host cell wall as well as the intracellular organisms. Treatment needs to be prolonged and pulsed, because of continual replication of the intracellular forms. Until adequate diagnostic facilities are readily available treatment needs to be in two stages: the first stage, which is diagnostic, involves the use of two long-term bacteriostatic antibiotics for 6 weeks, and the second, meant to be curative, involves the introduction of a third bactericidal antibiotic. One possible choice of antibiotics for the first stage is a combination of Doxycycline and Azithromycin. Initially, the Doxycyline needs to be given alone in low dosage for two weeks, because of the risk of a Herxheimer reaction resulting from the release of toxins by damaged bacteria. Such reactions are usually mild and short-lived. If stable after two weeks, Azithromycin in low dosage is added for 4 weeks. Roxithromycin can be used in place of Azithromycin. . Improvement of symptoms, or the occurrence of a Herxheimer reaction, confirms the diagnosis. If the diagnosis is confirmed, the second stage involves long-term pulsed treatment with the above antibiotics, plus the cautious addition of a third bactericidal antibiotic (e.g. Metronidazole or Tinidazole), with an appropriate break in giving the third antibiotic if the patient should have a severe Herxheimer reaction. Mild Herxheimer reactions usually settle spontaneously and need not interrupt treatment. The above suggested treatment is based on the David Wheldon Protocol for Multiple Sclerosis, available on the Internet (Wheldon protocol/Cpnorg.org/Chlamydia pneumoniae). References:- 1) Machtey I. Chlamydia pneumoniae antibodies in Myalgia of unknown cause (including fibromyalgia). J Rheumatol 1997; 36: 1134. 2) Elling P, Olsson AT, Elling H. Synchronous variations of the incidence of temporal arteritis and polymyalgia rheumatica in different regions of Denmarj; association with epidemics of Mycoplasma pneumoniae infection. Br J Rheumatol 1996; 23: 112-9. 3) Chia JK, Chia LY. Chronic Chlamydia pneumoniae infection: A treatable cause of chronic fatigue syndrome. Clin Infect Dis 1999; 29: 452-3. 4) Moling O, Pegoretti S, Rielli M, Rimenti G, Vedovelli C, Pristera R, Mian P. Chlamydia pneumoniae – Reactive arthritis and persistent infection. Br J Rheumatol 1996; 35: 1189-90. 5) Stratton CW, Wheldon DB. Multiple Sclerosis: an infectious syndrome involving Chlamydophila pneumoniae. Trends Microbiol 2006; 14: 474-9. 6) Komaroff AL, Wang SP, Lee J, Grayston JT. No association of chronic Chlamydia pneumoniae infection with chronic fatigue syndrome. J Infect Dis 1992; 165: 184. John Tovey
Competing interests: None declared |
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