Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Re: What causes chronic fatigue syndrome?
- Douglas T Fraser (22 October 2004)
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Wrong!
- Evert Potgieter (22 October 2004)
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ME/CFS and Sedentary Children
- Krysko Karl (22 October 2004)
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Wrong...AGAIN!!!!!!!!!
- Paul Taylor (22 October 2004)
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Prof. White's paper fails to recognise true nature of CFS
- David J. Nicholls (22 October 2004)
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Incline Village CFS demographics
- Erik R Johnson (22 October 2004)
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The Last Resort ?
- Duncan Cox (22 October 2004)
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Result of infection which plays on weaknesses?
- Nigel J W Hall (22 October 2004)
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Continental Ignorance
- Joerg Wiesenfeldt (23 October 2004)
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Pigs Might Fly.
- Barry Savage (24 October 2004)
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Re: Continental Ignorance
- Dr Charles Bernard Shepherd (24 October 2004)
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Re: Continental Ignorance
- Ellen Goudsmit (24 October 2004)
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Re: Continental Ignorance
- Serena Jones (24 October 2004)
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Re: Wrong!
- Peter Culdrose (24 October 2004)
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Dr. White's views far from universally held by those working in the field
- Tom P Kindlon (24 October 2004)
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A formerly active person replies:
- Phillip W Pierce (24 October 2004)
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Another infantile theory about ME
- Hayley Klinger (24 October 2004)
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Ask someone who has HAD it.
- Marlene C. Tuthill (24 October 2004)
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Hampered
- Connie Nelson (24 October 2004)
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Re: What Causes Chronic Fatigue
- Richard A.R. Bruce (24 October 2004)
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Chronic infections in CFS/ME?
- Blake Graham (25 October 2004)
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Re: Re: Wrong!
- john s marshall (25 October 2004)
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I believe this is a cop-out
- Aimee Fay (25 October 2004)
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Enforced physical exertion
- John Sayer (25 October 2004)
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I beg to differ...
- Wendy E Douglas (25 October 2004)
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Re: Continental Ignorance
- Regina Clos (25 October 2004)
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Low DHEA, again?
- James M. Howard (25 October 2004)
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Re: Continental Ignorance
- Owen Beith (25 October 2004)
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Not much variety in the BMJ's coverage of the (heterogeneous) condition, CFS
- Tom P Kindlon (25 October 2004)
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Outdated and simply wrong
- Yuliya Dobrydneva (25 October 2004)
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It's only a virus! CBT will help, won't it!
- martin pilinovics (26 October 2004)
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Immune system disorder causes chronic fatigue syndrome.
- Ellen C G grant (26 October 2004)
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childhood trauma association with CFS
- Vivien J Pomfrey (26 October 2004)
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Continuing deception by the psychs!
- Simon Lawrence (26 October 2004)
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Peter White the missionary
- Jane C Colby, W B Yeats (deceased) (26 October 2004)
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Nobody is listening to the patients
- Charles B Shepherd (28 October 2004)
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we do not know the cause of CFS/ME-so what now?
- Stephen F Hayes (29 October 2004)
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troubles with chronic fatigue syndrome
- Herman J. Oterdoom (29 October 2004)
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Biochemistry as part of neurology
- Ellen C G Grant (29 October 2004)
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Re: we do not know the cause of CFS/ME-so what now?
- Douglas T Fraser (29 October 2004)
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There is ample evidence of organic disease in ME/CFS
- Angela Kennedy (29 October 2004)
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Progress determination in ME / CFS
- Derek Enlander (29 October 2004)
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Address the symptoms and the syndrome will become clear
- Craig Coady (31 October 2004)
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Yet another 'atypical' sufferer
- Karen Glanville (9 November 2004)
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Blaming the victim
- Denise M. Swanteck (14 December 2004)
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Translation for the layman
- Philippa V Sutton (30 June 2007)
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Wrong!
- Trudy A Allen (24 October 2007)
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Douglas T Fraser, musician W6
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Editor, In his editorial Professor White makes it clear that he understands the terms "chronic fatigue syndrome" and "myalgic encephalomyelitis" to be synonomous and representing an illness of unknown nature and cause. Commenting upon the art of uncovering the nature and causes of disease in the context of Gulf War Illnesses, Professor Haley makes the point that the better the case definition, the more useful it will be in uncovering the nature and causes of GWS, and that the less specific the case definition, the more true cases will be misclassified as non-cases and vice versa.[1] And in their recent letter to the JCP [2], Dr`s Kennedy, Spence, Underwood and Professor Belch demonstrate the advantage of accurate classification within the context written about by Professor White. "......What is clear is that the term CFS is heterogeneous and lacks specificity as others have reported [3, 4]. The CFS patients in our study should more accurately be described as those having myalgic encephalomyelitis (ME) as defined by Ramsay [5] which has recently been reported to be operationally distinct from those with chronic fatigue and chronic fatigue syndrome [6] especially in the neurological and neuropsychiatric areas reported in our recent study [2]. Fatigue is a symptom and not a disease and, ultimately, “an operational CFS case definition will need to be based on empirical studies designed to delineate the possibly distinct biological pathways that result in illness” [3]: such a case definition already exists [7]. Our paper on increased neutrophil apoptosis in a specific subset of patients within the CFS construct goes some way to assisting in this process of classification." Clearly, until some very serious attention is given to accurate definition and classification, the question - "what causes chronic fatigue syndrome?" - will remain for some as meaningless as the riotous speculation about causes it seems to engender from others. Yours Douglas T Fraser [1] http://www.lloyd-gwii.com/admin/ManagedFiles/2/GWII0308%2000.doc [2] http://jcp.bmjjournals.com/cgi/eletters/57/8/891#134 Competing interests: None declared |
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Evert Potgieter, Writer/ ex-ME sufferer SE17
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Dear Mr White, I am saddened to see that people like you are still misled/misinformed as to the true naure of ME. And that you actually publish your ignorance in a prestigious magazine like the BMJ. When will you and the ME myth perpetuating establishment wake up to the fact that the true cause of this syndrome are toxins in our environment and foodchain! Especially since the second world war we have been noting this exponentially in all industrialised(ie more toxic) countries worldwide. Only when we realise the true causes will sufferers get cured. Until then you all will keep saying there is no cure and there probably never will be. But do come in for some CBT or stop being so lazy. Sincerely, Evert Potgieter Competing interests: None declared |
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Krysko Karl, ME Disabled LL57 3HD
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Thank you for a very interesting article.
I do not think we see children who have been forced to lead sedentary life styles, those for example with conditions such as haemophilia, going on to get ME or CFS as adults. This would indicate to me that they, the ME/CFS adults, already either had the condition to some extent or a predisposing tendency, perhaps genetic or due to early viral challenge, as children.
Karl Krysko.
Competing interests: None declared |
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Paul Taylor, not working due to illness Brighton BN1 4DN
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A nice try at yet another psychobabble theory for the causation and continuation of M.E. What a pity it doesn't fit my personal experience one little bit! I was actually very active during my childhood even though I often felt unwell or very tired following a mystery virus illness at the age of 13. Contrary to your expectations I never went to visit my GP once about it. I just got on with my life just thinking that maybe all people felt like this and did not dwell on it at all. I was a very happy, active, out- going, young person until eventually I went down with a glandular fever type virus at the age of 18(shown up in two blood tests) and my "real" ME began. Now my feeling is that ever this was a reactivation of my original illness at age 13 OR it was another virus on top of the one that still lingered within my system and somehow they combined, or whatever, to casue my "real" ME to start. That was over twenty years ago and I'm no better. Even now I didn't give in to the ME and went to Poly and did some work. I shouldn't have even though I enjoyed my time because it caused my health to deteriorate further and I have never recovered. These are not the actions of the sort of person Dr. White would have you all believe us to be is it? Frankly it is time for all this psychobabble nonsense to stop and for some usefull physical research to be done or else ME's puzzle will NEVER be worked out. One last thing, can the psyches such as Dr.White please stop repeating the false information that graded exercise and CBT help people with ME to feel better. It is not true and is based on a handful of small research trials done by parties with vested interests in the outcomes and using unsound methods such as not counting the many people who dropped out due to being unable to continue with the treatment due to it making them physically too unwell and excacerbating their ME symptoms. One study done amongst people with ME showed that a large majority had been made worse by graded activity and CBT, and please don't beieve the old chestnut that the psyches come out with about the programmes having to be carried out by accomplished practitoners at these therapies. It doesn't wash. This latest hogwash is one pathetic desperate theory too far. I expect you've got some more though when this one is also discredited. Competing interests: None declared |
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David J. Nicholls, Retired (ill-health) Retired
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As someone who has had Chronic Fatigue Syndrome (CFS) since 1983, I was pleased to see the BMJ included a paper on this topic (What causes chronic fatigue syndrome? BMJ 2004; 329: 928-929, 23 October 2004). In my own case, I lost my health, my home and my employment at age 29 when CFS suddenly appeared in my life. Until this time, despite being a type 1 diabetic since age 3, I had been in robust and excellent health, and always been very energetic and never suffered any unexplained fatigue. On reading his paper, it was disappointing to read that Professor White wishes to place CFS sufferers into tidy little compartments which I suspect have little basis in fact, and he can only suggest treatments of ‘graded exercise, and cognitive behaviour therapy’ and ‘reprogramming interoception’. This is absurd. The idea that CFS will be resolved by telling sufferers to be more active and less aware of their internal physiological state is not only insulting, it completely fails to appreciate the nature and extent of a condition which is absolutely devastating and wholly debilitating. It is difficult not to gain the impression from papers, such as the one by Professor White, that CFS sufferers are ‘a bit depressed’ or too introverted, and just need to get off their lazy backsides. If this is the best that Prof White can offer, I suggest that he needs to do more research. Much more. David Nicholls (Dr.)
Competing interests: None declared |
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Erik R Johnson, n/a Incline Village NV 89450
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Dr White, did you not see the demographics of the Incline Village CFS outbreak? We were the athletes, the achievers, the "Yuppies". Deconditioning and a "sedentary lifestyle" played no part in CFS. One of the illness clusters was in the girls basketball team at Truckee High School. Is there absolutely no amount of evidence that can make your views congruent with the facts? -Erik Johnson Competing interests: None declared |
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Duncan Cox, ME Patient CV22 5RL
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Following Viner's and Hotopf's study, concluding that a sedentary childhood was a risk-factor for developing CFS/ME in adulthood, I hurriedly leafed through my old photo albums, thinking that the researchers could well be on to something - and they were right, in each of the rugby/football/cricket team photographs I was sitting down. With regard to Dr Peter White's editorial: I lost my job last year due to ME and following a viral infection 2 years ago my wife a Radiographer (who taught stress management/relaxation in an Oncology unit) is about to lose hers; and the "authoritative" explanation is ... that we need to change our perception of activity and cognitive abilities! Incredible. I presume that in the spirit of openess and accountability the BMJ will now offer the same editorial opportunity and freedom of expression to doctors involved in biomedical research into ME/CFS, who will I'm sure present quite a different viewpoint. It would be most unfortunate if the Journal were to be accused of editorial bias. Yours Sincerely Duncan Cox Rugby, Warwickshire Competing interests: None declared |
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Nigel J W Hall, Retired - ill-health (CFS) S8 0ED
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I was diagnosed with CFS 6 years ago but can trace the origins back at least 13 years. Recently I have been made aware of Dr Andrew Wright's extensive research into the link between Borrelia type blood infections and CFS. I am seeing him in December for a private consultation and blood test which, from this evidence I have gathered, will probably confirm this undiagnosed infection. Many of his CFS patients are seeing good progress in their recovery following Dr Wright's treatment protocol which includes, inter alia, long-term anti-biotics and de-toxifying remedies. My NHS blood test for Lyme Disease proved negative, but I understand their test is generally inadequate. My specific response to this article is this; The symptoms broadly covered by the catch-all "CFS/ME" title are the result of an infection which plays on the weaknesses in a sufferer's physiology. Although I have always been fairly active - for years I used to walk or cycle for miles - I have poor back posture and consequently I suffer from chronic back pain probably caused by inflammation in my over-stressed cevical spine. My family has always needed their sleep and I followed suit. Consequently when sleep disturbance (a classic CFS symptom)set in this started to cause havoc with my overall energy levels. To a limited extent graded excercise has helped me manage my condition but I have seen no overall improvement in the last few years despite trying to be as active as possible. In fact for some time now my symptoms have been at their worst for years. Whereas psychological factors of course cannot be dismissed I think it more another case of the CFS playing on a weakness in stress toleration and the knock-on effect of introspectively asking; "what on earth is happening to me?", followed by anxiety/depression etc as one's life-style is turned upside-down. I would respectfully ask that the editorial's author visits the following website for further enlightenment, particulaly with reference to message number 20433 which is an excellent summary of the issues relating to CFS/ME and Lyme Disease : http://groups.yahoo.com/group/EuroLyme/ Competing interests: None declared |
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Joerg Wiesenfeldt, Registrar Dept of Neurology St.Elisabeth Krankenhaus D54516 Wittlich Germany
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There seems to be no ME/CFS and no related charity in Germany. While being aware of postviral fatigue, I never met any case of unprovoked non- psychiatric chronic fatigue in my clinic. There seems to be no german translation for "Myalgic encephalomyelitis". How do you classify it in ICD -10 ? Is it a physiological state ? immune-(in)-activation ?something like migraine or epilepsy ? a psychiatric illness ? or, as "ME" suggests something like "MS" ? Sincerely Yours, Joerg Wiesenfeldt Competing interests: None declared |
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Barry Savage, Director, Dataman Programmers Ltd. President, Dataman, Inc. Station Road, Maiden Newton
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"Infections, physical inactivity, and enhanced interoception may all play a part." Sentences which depend on the word "may" don't say actually anything they just cast aspersions. Doctors may be stupid, psychiatrists may be the most stupid and Peter D. White may be particularly stupid. I didn't say anything definite, Pete, I'm just kidding. What does "enhanced interoception" mean? It means it might be all in your mind, right? You psychiatrists are so predictable. Similarly the "heterogenous nature of the illness" hasn't got much to with the sufferers, has it? What they say and do is remarkably and unrelentingly consistent. It's the doctors who like to bat those heterogeneous balls around. I really liked the suggestion that M.E. might be caused by its symptoms, if the patient reports them before M.E. is diagnosed. I bet Quasimodo was a hunchback in childhood. You fellows ought to be issued with an Occam's Razor to keep in your little black bags. Will somebody fund me to establish that earnest stupidity in childhood is a replicated premorbid risk marker that predicts a career in medicine? Competing interests: I have M.E. |
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Dr Charles Bernard Shepherd, Medical Adviser, ME Association The ME Association, 4 Top Angel, Buckingham MK18 1TH
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ME/CFS does exist in Germany - I know it does because I've been to Berlin and given a lecture to a packed audience of patients who weren't getting much help from the medical profession. If German doctors want to find out more about this disease they could contact Fatigatio e.V, the German self-help support charity. They have a website at: www.fatigatio.de/ and have published my guidelines booklet in German for the benefit of both patients and health professionals. ME and CFS are both recognised by the World Health Organisation and are classified as neurological disorders under Section G93.3 of ICD10. So there can be no excuse for the ignorance of German physicians on this subject! Dr Charles Shepherd Competing interests: None declared |
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Ellen Goudsmit, Psychologist London TW11 9QX
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My learned German colleague may be interested to know that I have known ME patients in Germany, and that there is a national support group there. There are also physicians with a special interest in the illness, and some have published their research (e.g. Hilgers and Frank). The only place where there have been no reports of ME is the Arctic. As an archivist, I've read reports from pretty much everywhere, from China, Russia and Sierra Leone to Europe, America and South Africa. I've also spoken to a patient from Peru. During the eighties, most of the requests for reprints of my articles etc came from behind the Iron curtain, which was a surprise as I kept reading that ME was a product of Western\capitalist decadence. One lady told me that she had ME but could not access any help as her illness was not on the official list of diseases drawn up by the Communist Party. Thus it did not exist. The national support group in Germany can provide information, including the signs and symptoms which differentiate ME and CFS from affective disorders and somatisation. I'm sure Google can help to find their current address. Competing interests: None declared |
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Serena Jones, NA London
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Dr Wiesenfeldt can contact any one of the following organisations for information about chronic fatigue syndromes in Germany: Bundesweite Selbsthilfegruppe MCS/CFS e.V. Konigsbergstr. 5b D-95448 Bayreuth Germany Phone: +49 (0)1024 0921-23582 URL: http://mcs.eu.cx Deutsche Selbsthilfegruppe CFIDS/MCS PO Box 160153 40564 Duesseldorf Germany Phone/Fax: +49 (0)211-218724 Fatigatio e.V. Bundesverband Chronisches Erschopfungssyndrom (CFS/CFIDS/ME) Goethestrasse 26-30 10625 Berlin Phone: +49 (0)30-3101889-0 Fax: +49 (0)30-3101889-20 Germany URL: http://www.fatigatio.de/ CFS has a neurological code in ICD-10: G93.3. Competing interests: None declared |
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Peter Culdrose, Severe M.E. sufferer, previously television director SW1
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Dear Editor, Once again I feel that Sir Peter White OBE is pushing his false beliefs regarding ME. When will he learn with his colleague Simon Wesseley that the tide of evidence, as with GWS, is turning against them. People with ME are not psycologically disturbed. They are Physically ill with ME caused by a physical illness called ME. Peter Culdrose Competing interests: None declared |
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Tom P Kindlon, Unavailable for work due to ill health Dublin, Rep. of Ireland
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Unavailable for work due to ill health Dublin, Rep. of Ireland Send response to journal: Re: Dr. White's views far from universally held by those working in the field While Peter White is perfectly entitled to his own views on chronic fatigue syndrome (CFS) and propose his own models for the condition, (as in this case where he writes about a speculative theory involving interoception), an analysis of the BMJ's reporting of the illness over the years would suggest that readers of the BMJ are disproportionately "exposed" to articles portraying CFS as a primarily psychiatric condition or at least one that will readily respond to graded exercise therapy and cognitive behaviour therapy. Here are the results from a quick search of the BMJ archives: Editorials in the BMJ on chronic fatigue syndrome since the start of 1994 (that's how far online searches go back) EDITORIALS: S M Lawrie (psychiatrist) and A J Pelosi (psychiatrist) Chronic fatigue syndrome: prevalence and outcome BMJ, Mar 1994; 308: 732 - 733. EDITORIALS: Stephen E Straus (appears to have similar views to the psychiatrists about CFS) Chronic fatigue syndrome BMJ, Oct 1996; 313: 831 - 832. EDITORIALS: Harvey Marcovitch (Consultant paediatrician who appears to have similar views to the psychiatrists about CFS) Managing chronic fatigue syndrome in children BMJ, Jun 1997; 314: 1635. EDITORIALS: Michael Sharpe (psychiatrist) and Simon Wessely (psychiatrist) Putting the rest cure to rest again BMJ, Mar 1998; 316: 796 - 800. EDITORIALS: Stephen E Straus (see above) Caring for patients with chronic fatigue syndrome BMJ, Jan 2002; 324: 124 - 125. EDITORIALS: Peter D White (psychiatrist) What causes chronic fatigue syndrome? BMJ, Oct 2004; 329: 928 - 929. Breakdown of those who wrote editorials: 5 psychiatrists with 2 others expressing views which would be inline with the psychiatrists' views of CFS. Classification by the World Health Organisation of ME and CFS: neurological! (ICD-10; G93;3). These are just the result of editorials. If one does a general search for "Chronic Fatigue Syndrome", apart from the letters, the vast majority of articles in the BMJ on CFS appear to be either written by psychiatrists or those who hold similar views to the psychiatrists on CFS. There has just been a major conference on CFS in the US. Various researchers presented all sorts of interesting studies, many of which would appear not be compatible with the views expressed in this editorial or indeed with the other editorials mentioned above. A summary of this conference can be found at: http://www.wicfs- me.org/Pdf%20Files/AACFS%202004%20Report.pdf More detailed information will be available to be bought in time from the AACFS (American Association for CFS) website www.aacfs.org . The AACFS is an organisation for clinicians, research investigators and healthcare providers rather than a patient organisation. Unfortunately because of the shortage of funds to do research in the area, many of these studies never get replicated. I hope the new editor of the BMJ will reflect on these statistics and the readers of the BMJ will be reading an alternative point of view on CFS in the future. Competing interests: None declared Competing interests: None declared |
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Phillip W Pierce, elearning developer Nottingham Trent University
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Having had ME/CFS for over two years, I found Peter White's article to bear no relation to my experience of this debilitating illness. As a child I was very active, initially following in the steps of my professional cyclist uncle as keen amateur cyclist, additionally playing hockey for the school team (ie in my own time) not to mention table tennis and a little cricket. At the time my ME/CFS became evident at the age of 30, I was still cycling 10 miles a day and swimming regularly, activities that I was reluctant (indeed, heartbroken) to give up. For the last year I have shown steady improvement by radically improving my diet, and ensuring I get enough rest. I look forward to making a full recovery and living a full and active life again. However it will be despite, rather than because of articles like this and the kind of thinking about ME/CFS that they promote. We need research into the physical causes, or else thousands of people will continue to suffer needlessly for many years to come. Competing interests: None declared |
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Hayley Klinger, unable to work through ME London
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Peter White has come up with the brilliant concept that ME patients have enhanced bodily awareness. I think this could be extended to encompass many illness and provide an invaluable insight into what makes people ill, ie not the illness but the awareness of how it feels to have it. Many people who get, for example, a throat infection, or an earache or broken bones complain about the pain and therefore also seem to suffer from enhanced bodily awareness. The only glitch in this theory is that these patients seem to stop complaining when they get treatment and recover. Maybe an attempt could be made to help ME patients recover from their illness rather than sitting in judgement as to how much pain they are entitled to feel. The problem with that would be that the money designated for ME research would have to be given to fields other than psychiatry and that would never do. Competing interests: None declared |
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Marlene C. Tuthill, Architect 95661
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Your article is not consistent with many CFS sufferers experiences. My own personal experience was: I visited a lady who had a 'bad respiratory cold'. A couple weeks later I came down with a 'bad respiratory cold', and a couple weeks later one of my Clients came down with the same 'respiratory cold' symptoms. Over the next few months, I went to the doctor because I couldn't seem to recover form this 'cold'. I became extremely tired and very, very weak. But the doctors couldn't find anything except a mild fever. I started having 'near fainting/black-out' spells, (and almost fell off the toilet a couple times because I was soooo weak). My neck and back felt stiff and ached, and I had a headache with fever, as well as sinus problems and several other symptoms. The doctor gave me antibiotics, but I didn't get better. I wanted to take time off work to recover, but the doctors were not supportive, so I kept 'pushing' myself. A little later found out that the other two people who had the 'cold', both ended up collapsing and put in the hospital. I was so weak, I knew I had to quit my job and go home to recover, or I would end up in the hospital too. I figured I would be off work for 2 or 3 months. But a year later, I was still sick... and in fact, worse. My body seemed to be falling apart on me. And whenever I tried to push myself to work part-time, I would collapse even more. Finally after being sick for two years - I went to a Health Food store, where the owner is a certified nutritionist and herbalist. She told me that her niece had CFS, but had recovered. The lady told me that the exact cause of CFS is not known and there may be several causes, ...but that it is commonly pedicated by a respiratory virus, and the immune- system becomes dysfunctional, typically OVER-active. She suggested that I take an 'immune-balancing' herb, called 'Saventaro', which also has natural anti-viral properties. I also decided to take 'Cordyceps' - a chinese mushroom which helps circulation and the liver. Within 4 weeks I could notice a 30% increase of energy. After 6 weeks, I had 50% more energy and my 'brain-fog' started to lift! At 8 weeks I was 85% better. And at 10 weeks, I returned to work again. I even got my previous job back! I have my LIFE back again! Marlene Tuthill Architect PS. I have been working full-time for 2 years now, without a relapse! Also, I later found out that the man, who was a Client of mine, said his doctors found he had an 'unidentified virus' and that it took over 6 months of various treatments before he eventually recovered enough to return to work. (He lost his job also.) Competing interests: None declared |
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Connie Nelson, n/a n/a
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Dear Dr.White, With regards Chronic fatigue syndrome you state: "Research about its cause has been hampered by the absence of a biological marker, the heterogeneous nature of the illness, and difficulties in differentiating cause from effect." I would like to suggest there is a case to be argued that research into CFS(ME) has been hampered by the constant refusal, by those who should know better, to differentiate between chronic fatigue/neurasthenia which is classified under mental disorders in the ICD-10 and Chronic Fatigue Syndrome/ME classified under Diseases of the Nervous system. An example of this can easily be found in the booklet New Research Ideas in Chronic Fatigue produced by the Linbury Trust, one of the UK's major sources of research funding into CFS and published by the RSM. The booklet informs the reader: "Under names such as neurasthenia, effort syndrome, and myalgic encephalomyelitis (ME), CFS has generated medical debate for more than a century." This statement makes such a mockery of the World Health Organisation classification system that one may suspect this world-renowned organisation is now defunct, certainly as far as the UK is concerned. Then of course in October 2001 it was discovered that CFS(ME) had been unofficially reclassified as a mental disorder in the WHO Guide to Mental Health in Primary Care, a U.K adaptation of a World Health Organisation publication,developed by the Collaborating Centre of the Institute of Psychiatry, London. However, despite numerous complaints being made and adherence to ICD- 10 classifications being mandatory in the UK, sales of the book were allowed to continue unabated for almost two years until almost all 30,000 copies had been sold before an erratum slip was sanctioned, full wording of which can be read on the RSM Press publishers website. http://www.rsmpress.co.uk/bkwho.htm It is noteworthy that CFS (ME) has been once again been included in the 2nd edition of this Guide, however the title of the book has rather conveniently been altered to allow the inclusion of both mental and neurological disorders. Incredible as it may seem this Guide's misclassification of CFS (ME) also led to CFS being wrongly classified as a mental disorder in the Mental Health Minimum Data Set data manual, found on the NHS Information Authority web site. In addition to the above, most of the research funding in the UK has been awarded to the 'management' of broadly defined chronic fatigue (F48.0) rather than research of strictly defined CFS (ME) classified in the chapter for Diseases of the Nervous System under the code G93.3. Would you be good enough to explain how this confusing situation has come about? Competing interests: None declared |
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Richard A.R. Bruce, none none
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It seems to me that some doctors are using CFS as a catch-all diagnosis for difficult illnesses and this view was strengthened when M.E. was included under the CFS banner. Chronic Fatigue is a direct effect of many diseases, many drug treatments (such as chemotherapy), other treatments such as radiotherapy, and is a frequent symptom reported in certain pesticide poisonings. Experts can pontificate forever on a single cause but may be wrong in the majority of cases. If accurate histories of M.E. patients are taken it is likely that some chemical exposures have been involved at some stage. Critically many cases diagnosed with M.E. have actually been exposed to organophosphorus chemicals such as are found in fire retardants, pesticides, oils etc. These chemicals have been known to interfere with the adenosine diphosphate (ADP) and adenosine triphosphate (ATP) energy transfer process in the body for many decades and this interference with oxygen transport can obviously result in chronic fatigue. In case any CFS patient believes that they have not been exposed to these chemicals then they should be advised that they have been used as an undeclared additive in food for some 30 or more years. A large percentage of the population are genetically susceptible to organophosphorus compounds and this has also been known for decades. The diagnosis of CFS could be a means employed to hide the known dangers of these chemicals. Richard A.R. Bruce. Dated 23-10-2004 Competing interests: Poisoned by organophosphates |
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Blake Graham, BSc. (Nutrition) Perth, Western Australia (6000)
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Peter White stated that there is no evidence of chronic infections in CFS/ME. There is in fact direct evidence for the presence of Mycoplasmas, HHV-6, Chlamydia, CBV, bowel infections and variety of other opportunistic infections in CFS/ME. Competing interests: None declared |
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john s marshall, Consultant Physician Sydney
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Be it ME,poor ME,or Post-Viral ME,do not forget,in Anglo-milky countries,the therapeutic value of a full three month avoidance of milk containing products,these can be sedative not only by night. Competing interests: None declared |
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Aimee Fay, Business consultant Dorset UK
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Briefly, I will respond to this from the position of the "experienced" CFS/Fibromyalgia patient. I believe that the article by Dr. White is basically a cop-out for ignorance about the cause of CFS. Either chosen ignorance in order to not have to face the reality of what is happening here - or unintentional ignorance. I was a CFS patient for 14 years. Prior to this, I VERY rarely ever visited a doctor for anything. I was an active and athletic child and young adult who participated in many sports (skiing, basketball, football, ice-hockey, etc). I did not have issues with anxiety or depression. Yet, according to Dr. White's article, the above should have made me a very low risk for CFS in his eyes. Yet, I am not unusual amongst "CFS" patients I have been in contact with. Having gone through the obstacle course and hoops of what is the NHS and prior to that in-the-dark M.D.'s(about CFS type illnesses) in the US - I finally tested positive for Lyme Disease about a year ago - along with Babesia and Bartonella infections. All tick-borne. It is now clear, being able to view/assess my entire illness history retrospectively, that I have had Lyme Disease all along. It was not discovered nor was it treated. Instead, it was just called CFS. At no point was a COMPLETE history taken, but only piecemeal - i.e. "how are you feeling TODAY?". Being a multi-system, quickly disseminated disease causing body-wide symptoms, I was sent from pillar to post, visiting every body-part specialist known to man. Nothing very unusual was found. Like many patient with a CFS label, I had profound fatigue, of course. But, I also had night-sweats for many years, and still do. Rashes - body wide. SEVERE migraines. Severe febrile illness with very high white blood cell count which left me hospitalized and SEVERELY ill and regular fevers for the last 15 years. I also suffer a lot of neurological symptoms - twitching, internal tremor, visual problems, neurological hearing loss, balance problem, etc. More recently I have developed PCOS and other hormonal problems as a result of the cascading effect of this multi-system disease. The list is nearly endless. I have found, through networking with similar people, that my case is far from unique. I am also finding that CFS and Fibromyalgia patients are in droves discovering that the root cause of their illness is either undiscovered chronic (late stage) Lyme Disease and possible co-infections. The "crime" here is that having done all the legwork, and homework ourselves and doing the work our physicians are supposed to do - we are then further penalized in the UK by being denied treatment for this disease. This Christmas - what I would REALLY like is for physicians like Dr. White to read ALL the literature out there, which is easily available and comprehendable even by a layperson, and EDUCATE themselves about tickborne diseases, spirochetal illnesses, testing (lack of reliability and different types), UP-TO-DATE treatment recommendations and types of.....etc. After they have read ALL such literature, I would like to hear what they have to say, and in particular I would like to see some action for change. A shift in the habitual attitudes of these physicians who REFUSE to see, or who plainly IGNORE, the truth. It is hard work changing a habit or belief of a lifetime. But, is is now very necessary to break these misguided habits and beliefs by some. Thank GOD there are a few physicians out there who are on the ball and sticking their necks out to save lives and not spending their time desperately trying to explain away this illness to some psychological cause. As the saying goes: "If you can't beat'em - join'em!". And, in this case it is best to join because we will not be beaten any more!! Competing interests: None declared |
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John Sayer, retired teacher NR10 5LT
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Prof. White refers to the report by Viner and Hotoph and the suggestion that "a sedentary childhood" can lead to chronic fatigue syndrome in adulthood. But what is actually being claimed here? "...chronic fatigue syndrome was predicted by having a disabling illness in childhood and never or hardly ever doing sport out of school at age 10." "...10 year old children who were reported by their mothers to 'never or hardly ever' play sport in their spare time had twice the risk of chronic fatigue syndrome in adulthood." "Although statistically significant, being more sedentary was not a strong risk marker, since 84 per cent of those who later developed chronic fatigue syndrome were not sedentary..." The first point to leap from the page at me is that only 16 per cent of those children who later developed chronic fatigue syndrome were considered "sedentary". (I also ask myself how such a small percentage could be considered "statistically significant", but that's for a separate response.) Prof. White draws attention to compulsory school sport, which "had no effect". So what we are dealing with here are children who are not actually "sedentary", but who happen not to indulge in sports outside school. (It is worth noting that some children do not indulge in other subjects - eg. maths, science, art, English, foreign languages - outside of school hours either.) Prof. White says that Viner and Hotoph found that (emphasis my own) "chronic fatigue syndrome was predicted by *having a disabling illness and* never or hardly ever doing sport out of school at age 10." So is "sedentary" being equated here with "having a disabling illness"? It strikes me that this is where research and analysis should be focussed, since what is being indicated here is that having a disabling illness in childhood can lead to further disabling illnesses in adulthood. But what rings alarm-bells with me most about the interpretation of the data is this: those who actually suffer with M.E. *know for a fact*, to their bitter cost, that over-exertion causes physical harm, which is very likely permanent and cumulative. As far as I can see, Viner an Hotoph's findings *prove the case*, since what they report is that children with a disabling illness who are forced to do sports at school become seriously ill in adulthood. The question now is: what are the authorities going to do about this appalling situation? Because if action is not taken immediately on these research findings, then the educational, social and health services are guilty of gross abuse and negligence. Competing interests: None declared |
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Wendy E Douglas, Newborn Hearing Screen Local Programme Manager SK10 3BL
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I beg to differ with a number of points in your paper. There are many individuals with this illness, and each one is just that, an individual, with his or her own history and background. However, over the last 7 years in which I have been studying this illness I have found a number of obvious patterns in these histories. Your paper suggests that this illness is due to a sedentary lifestyle and a lack of fitness and activity prior to becoming ill. You may remember a number of years ago a colloquial term for this illness was "Yuppie Flu", a name which highlighted the fact that many, though by no means all, were high flyers who pushed through the initial flu-like illness causing the resultant chronicity. An overwhelming similarity in the histories of people with Myalgic Encephalomyelitis (ME) is that people were well prior to developing these symptoms, some were extremely athletic, some were high achievers, many packed their lives full to bursting, but many were just normal people with normal lifestyles; and yet almost everyone can point to a specific turning point or trigger. Many had a flu-like illness, mononucleosis, or a severe GI upset. Some were triggered by immunisation, Hepatitis B is a common one - there is much American research on this aspect. Some had close contact with organophosphates (sheep dips and crop sprayers in particular). There are many triggers, but why they cause the body to collapse in such a spectacular way for such duration is unknown. Activity *is* more of an effort for a person with ME, not just perceived, and people with ME often *over* estimate their cognitive and physical abilities leading to a state commonly known as "boom-and-bust". For example, for one person with ME an activity such as taking a shower can result in having to lie down and do nothing for hours afterwards, or for another person a day at work can lead to a week in bed. Interoception, the sense of the physiological condition of the body, enables a person with ME to cope. It has been widely acknowledged that "Pacing" is one of the few ways of treating (or living successfully with) this illness. During an activity, being aware of the slight increase in a constant symptom or the onset of a new symptom, warns the person with ME that their limits are close by, and this can allow them to adjust their activity thus avoiding the "boom-and-bust" situation. However, for the majority of people ME is a fluctuating illness so pacing can be a tricky concept to apply. You suggest that interoception may itself cause sedentary behaviour that may then predispose some to Chronic Fatigue. I argue that interoception allows a person living with Chronic Fatigue to have at least some level of activity, thus preventing or at least limiting any de- conditioning. If I may give a personal example, standing for me is difficult, as is walking. My limit, on a very good day, is about 20 yards, sometimes much less. If I am walking and I begin to feel a burning in my upper leg muscles I know I need to sit down, if I do not heed the warning the burning will then continue for hours, or days, or even weeks if I have really overdone it. If I once set off my legs, this then preludes other symptoms like the clawing of my hands, spasms in the back muscles, "brain fog" where all thought and reasoning go out of the window - much like severe intoxication, and sheer profound exhaustion, which may not improve with rest. I do have a degree of muscle de-conditioning, and after 7 years of leg pain I now use a wheelchair by choice. My leg muscles have lost bulk, though the muscles in my upper body and arms now seem to be slightly more resilient, so as I use a manual wheelchair I am developing shoulder muscles like Popeye! By actively using interoception, and limiting (but not ruling out) the use of my leg muscles, I am able to keep the majority of my symptoms in check and my body in reasonable condition, thus allowing me to work full time and do a BSc with the Open University (projected 2:1 - not bad for a potentially brain-fogged person) May I respectfully suggest you further research this subject, not just by doing literature searches, but also by taking detailed histories from a good number of people who are living with ME. In doing so, you may find your views change. Wendy Douglas RGN; Certificate in Health Promotion; Person with M.E. Competing interests: None declared |
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Regina Clos, Deputy Chairwoman of Fatigatio 10625 Berlin
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Mr Wiesenfeldt’s ignorance of CFS/ME in Germany unfortunately is still representative of the attitude of most German physicians and psychologist/psychiatrists towards ME/CFS even though there are presumably hundreds of thousands of CFS/ME sufferers in Germany too. I’m sure he already met a ME/CFS “case” in his clinic - if not hundreds – but due to his lack of knowledge he might not have recognised them. And mixed them up with the many people who are chronicly fatigued yet do not fulfil the international case definition of Fukuda et. al (1994). It is estimated that only one in 40 fatigued persons has genuine ME/CFS. The national charity Fatigatio was founded already 11 years ago and ever since produced lots of information material, always based on the state of the art and the most recent international research in pathophysiology and possible treatments - thanks to our British, American and international co-sufferers and researchers who always willingly provide us with their newest publications. So did Charles Shepherd whose very informative brochure “ME/CFS: A Guide to Research, Diagnosis and Management” was translated into German and distributed by the thousands in Germany, Switzerland and Austria. Every physician, health care worker or patient will be provided with this brochure or another publication of our comprehensive list of information. He only has to visit our website www.fatigatio.de and fill in the order form. It is not even necessary to be familiar with the English language in order to learn all the basics of ME/CFS and how to best treat these people. Mr Wiesenfeldt – you will get an information pack immediately and for free and we respectfully request you to make yourself familiar with the immeasurable distress of the sufferers who not only suffer from the disease but also from the ignorance of the majority of German health care workers. Regina Clos Deputy chairwoman of Fatigatio, Bundesverband Chronisches Erschöpfungssyndrom (CFS/CFIDS/ME), Goethestraße 26-30, D-10625 Berlin, Tel: 0049- (0)30 – 3101889-0, Email: info@fatigatio.de, www.fatigatio.de Competing interests: Deputy chairwoman of German ME/CFS charity CFS sufferer for 18 years |
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James M. Howard, independent biologist 1037 North Woolsey Avenue, Fayetteville, Arkansas 72701-2046, U.S.A.
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In 1995, I first suggested low DHEA may be involved in chronic fatigue syndrome. This has since been supported in the literature. If intersted go to www.anthropogeny.com/physiology.html and look for chronic fatigue. This will take you my original idea and some support. Competing interests: None declared |
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Owen Beith, Freelance translator London E2 9JG
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With reference to Dr Joerg Wiesenfeldt's doubts concerning CFS/ME in Germany perhaps I can suggest a couple of websites for him to visit which may provide helpful information. Deutsches Institut für Medizinische Dokumentation und Information (DIMDI) [the German Institute of Medical Documentation and Information], WHO Collaborating Centre for the Family of International Classifications, publishes the German language edition of the International Classification of Diseases. In the English language version of ICD-10 in Chapter VI, Diseases of the Nervous System under G90.0 Other disorders of the nervous system / G93, Other disorders of brain / we find G93.3 Postviral fatigue syndrome, benign myalgic encephalomyelitis If Dr Wiesenfeldt goes to the following page at DIMDI's website http://www.dimdi.de/de/klassi/diagnosen/icd10/htmlgm2004/fr-icd.htm he will find Kapitel VI of the German Modification of ICD-10 (2004) and under G00-G99 Krankheiten des Nervensystems / G90-G99 Sonstige Krankheiten des Nervensystems / G93.- Sonstige Krankheiten des Gehirns he will find G93.3 Postvirales Ermüdungssyndrom, Benigne myalgische Enzephalomyelitis. So DIMDI is able to provide him with an officially approved German term "myalgische Enzephalomyelitis" for myalgic encephalomyelitis. Dr Charles Shepherd has already given Dr Wiesenfeldt details of some German CFS/ME support groups. To add another that Dr Wiesenfeldt should be able to find without much difficulty on the internet, Chronic-Fatigue- Syndrom-Board - Ein Austausch-Selbsthilfe Board" is an information exchange and self-help notice board which has a website at www.cfs- board.info. The site includes a page on chronic fatigue syndrome at http://www.cfs-board.info/home/cfsinfos/infos.html that helpfully translates chronic fatigue syndrome for him as chronisches Müdigkeitssyndrom - "Chronic Fatigue/ Immune Dysfunction Syndrome (CFS) wird im Deutschen Sprachraum mit Chronisches Müdigkeitssyndrom oder Chronisches Erschöpfungs- Syndrom übersetzt." As CFS-Board note on their home page, Germans are in fact only too aware that "CFS/ME ist ein biologisches, kein psychologisches Problem! Es ist die Ignoranz, Unwissenheit und oft menschenverachtende Haltung von gewissen: Verantwortlichen, Ärzten und Kostenträger, welche heute im 21igsten Jahrhundert noch so vielen CFS/ME Betroffenen unrecht antun, indem sie ihre ernst zunehmende bedrohliche Krankheit abtun oder sie zu unrecht in die psychosomatische Ecke schieben." Owen Beith Competing interests: Translator with chronic fatigue syndrome |
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Tom P Kindlon, Unavailable for work due to ill health Dublin, Rep. of Ireland
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In my last message, I listed the editorials the BMJ has featured on chronic fatigue syndrome over the years. I subsequently noticed an interesting feature the bmj.com site has, where the search results are broken down by category. I thought some people might be interested in seeing the break-down of results regarding "Chronic Fatigue Syndrome", which is classified by the World Health Organisation as a neurological illness and usually starts following a viral illness, with patients being left with various immunological, neurological, cardiological and endocrinological symptoms. http://bmj.bmjjournals.com/cgi/search?andorexactfulltext=and&resourcetype=1&disp_type=&sortspec=relevance&author1=&fulltext=%22chronic+fatigue+syndrome%22&pubdate_year=&volume=&firstpage=# Instant Index (what's this?) Based on my 182 results (articles only) "chronic fatigue syndrome" (full text) Cognitive behaviour therapy (30)
I would suggest that if the BMJ wants its readership to be able to continue to trust it as impartial source of information, it should be including different voices in its publication when talking about "Chronic Fatigue Syndrome". There are plenty of doctors and researchers whose research findings and clinical observations would not accord with the views of Peter White. As he himself refers to, the condition is heterogeneous and even if the sort of model he and other psychiatrists proposes fits some patients, it is unlikely to fit them all. Competing interests: None declared |
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Yuliya Dobrydneva, Ph.D., Instructor Eatern Virginia Medical School, Norfolk, VA, 23507, USA
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To the Editor, British Medical Journal How regrettable is that in the 21st century we still hear talk about psycho-somatization, deconditioning and other “it is all in your head” psychobabble whenever an attempt is made to discuss one of the most tragic and debilitating diseases known to modern medicine, chronic fatigue syndrome (CFS). While the scientists and physicians who assumed leadership roles researching the etiology of CFS/ME are building bridges in interdisciplinary research encompassing immunology, neurology, endocrinology and molecular biology, the BMJ decided to publish the outdated viewpoint espoused by Dr. White. Apparently some psychologists/psychiatrists are adamantly clinging to their belief that CFS/ME is a psychiatric illness, when in fact it is anything but that. If anyone is genuinely interested in discovering the current thinking about the etiology of this illness, a short PubMed search would reveal the deluge of convincing research data that the roots of the CFS/ME are in the tissue of the brain and not in the psyche. As someone poignantly said referring to CFS sufferers, "it is in their brains, not in their minds". If I may, I should point out to Dr. White research on causes of pediatric CFS by Dr. David Bell, a world-renowned expert in CFS, which completely dispels the obsolete myths of deconditioning and pre-existing activity limitation. Dr. White ultimately places the blame on the patients, or points to some presumed pre-existing psychological deficits that makes these individuals uniquely susceptible to CFS/ME. The school of thought which proclaims CFS/ME to be psychiatric illness is sadly reminiscent of not-so-distant times when MS was called “hysterical paralysis,” and earlier when prayer was considered the best treatment for almost every human ailment. In short, the position expressed by Dr. White on the pages of this esteemed British Medical Journal is obsolete and damaging to all the CFS/ME patients and researchers; it is neither based upon nor supported by current research data, and it only diverts valuable resources from a vigorous, scientific search for the etiology and treatment of CFS/ME. I think it is time to put it to rest and move on. Competing interests: None declared |
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martin pilinovics, Teacher uk
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Dear Dr White, Being a CFS/ME/PVFS sufferer for 12 years, I came across your paper, which was recently published in the BMJ. Although your paper brings out some interesting arguments, eg that "certain infectious illnesses, such as Epstein-Barr virus, Q fever, and viral meningitis, can trigger chronic fatigue syndrome;w3-w8 common upper respiratory infections do not", one could very well also say " HIV can trigger AIDS, common upper respiratory infections do not". I am not a doctor or scientist, but we (presumably) know now that it is the mechanism of the HIV virus which causes AIDS and therefore it could also be the mechanism of EBV, Q Fever and Viral Meningitis, which causes CFS/ME. I do not understand why you believe that, "Little evidence exists of persistent infection in patients with chronic fatigue syndrome." There is a lot of emerging evidence which has been done by independent researchers which shows an upregulation of certain anti-viral pathways and cleavage of the normal "healthy" enzyme in this pathway. The cleaved enzyme therefore does not work properly and the hypothesis is that certain viruses and mycoplasmas can then infect the cells and cause an inflammatory process and the symptoms known as CFS/ME. Also, studies of immune activation indicate that "activated lymphocytes can pass through the blood-brain barrier in small numbers and activate the lymphocytic and dendritic cells in the brain, particularly microglia and perivascular cells, and this state of low-level activation can last decades. Also, how do you account for CFS/ME occuring in epidemic form, such as the royal free hospital outbreak and the outbreak at Incline village, Nevada? How can so many soldiers with similar symptoms to CFS/ME get ill after having been to Iraq? How can everybody suddenly get ill at the same place at the same time, and stay ill for many months and years? Did they all not play sport at school? Did they all have undiagnosed childhool illnesses? I doubt it, I doubt that at all. I think that your arguments present more of a discussion rather than a solution, and one of the main discussions could be "why do certain infections cause/help to cause CFS/ME and others do not?" And yet another discussion could be, "how do we know that common upper respiratory infections do not cause/help to cause ME/CFS?" Finally, I believe that CBT just has a placebo effect on CFS/ME patients and people do get better with time anyway, although not everyone does and it happens at varying degrees.They are there having therapy and the health professional is saying, "are you feeling any better?" What are they going to say? No? of course not. They are going to say yes, because that is what is expected of them.....even if they are still feeling miserable inside them. Competing interests: None declared |
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Ellen C G grant, physician and medical gynaecologist 20 Coome Ridings, Kingston-upon-Thames, KT2 7JU. UK
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EDITOR_ Psychiatrists and psychologists have had a field day with patients suffering from “Yuppie flu”, chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) or post viral syndrome (PVS).1 Symptoms are puzzling if the relevant biochemical and /or microbiological tests are not used to diagnose and guide treatment for this immune system disorder.2-4 Most importantly, magnesium (Mg) for muscle function (myalgic) and zinc (Zn) is needed for normal brain and nerve function (encephalomyelitis). An antipathy to sport is clearly protective if these damaging deficiencies are not corrected in children or adults. In my experience ME patients have had viral infections and have a many essential nutrient deficiencies. Most are young women who have used progesterone contraceptives and their condition is worsened if given more immunosuppressive steroid hormones (HRT, DHEA) as symptom-suppressing “treatment”. Undiagnosed bacterial and/or mycoplasmal infections of the endocervix or prostate are common. The usual immune- system-impairing deficiencies, of Zn, Mg, copper (Cu) and impaired superoxidase activity, can be diagnosed from levels in sweat, white or red blood cells (RBCs) and treated with supplements. B vitamin activities and RBC essential fatty acids (EFAs) pathways usually are also usually impaired. Werbach’s review concluded deficiencies of various B vitamins, vitamin C, Mg, sodium, Zn, L-tryptophan, L-carnitine, coenzyme Q10, and EFAs, contribute to the clinical manifestations of the syndrome and were detrimental to healing.5 Dunstan’s investigation of urinary excretion, blood lipids, immunology, organochlorine pesticides and microbiology found that the CFS patients had multiple anomalies in homeostasis.6 Keenoy’s group showed that the lower antioxidant capacity in moderate Mg deficiency in ME patients was not due to a deficit in dietary intake. Nevertheless, supplementation was followed by an improvement in Mg body stores, in serum vitamin E and its interrelated stage of lipid peroxidation.7 In a small study patients had significantly increased serum aluminium and decreased iron blood levels. In the females, serum iron and dehydroepiandrosterone (DHE) sulphate were decreased while total cholesterol was increased.8 Such results can mislead by failing to use the tests needed to diagnose basic co-factor deficiencies (Zn, Cu, Mg) which can lower DHE, progesterone and oestrogen production, even resulting in anovulation and amenorrhoea. It is a mistake to prescribe more steroid hormones as the use of contraceptive hormones seems to be the main reason for the sudden increase in ME in young women since the 1960s. ellengrant@onetel.com 1. White P. What causes chronic fatigue syndrome? BMJ 2004;329:928- 929, doi:10.1136/bmj.329.7472.928. 2 Grant ECG. Re: CFS is a Th1 Immune Disease, Bacterial in Origin http://bmj.com/cgi/eletters/329/7457/112-b#68575, 25 Jul 2004 3 Grant ECG. Chronic Fatigue Syndrome and genital mycoplasmal infections.http://bmj.com/cgi/eletters/329/7457/112-b#68817, 27 Jul 2004 4 Grant ECG. Re: Hormornal Balance switches from Th1 to Th2 during Pregnancy http://bmj.com/cgi/eletters/329/7457/112-b#69006, 28 Jul 2004 5 Werbach MR. Nutritional strategies for treating chronic fatigue syndrome. Altern Med Rev 2001 ;6:4-6. 6 Dunstan RH, Mcgregor NR, Butt HL, Roberts TK. Biochemical and Microbiological Anomalies in Chronic Fatigue Syndrome: The Development of Laboratory Based Tests and the Possible Role of Toxic Chemicals. J Nutr Environ Med 1999; 9: 97-108. 7 Keenoy MY , MoorkensG, Vertommen J, et al. Magnesium status and parameters of the oxidant-antioxidant balance in patients with chronic fatigue: effects of supplementation with magnesium. J Am Coll Nutr. 2000;19: 374-82. 8 Van Rensburg SJ, Potocnik FC, Kiss T, et al. Serum concentrations of some metals and steroids in patients with chronic fatigue syndrome with reference to neurological and cognitive abnormalities. Brain Res Bull. 2001;55: 319-25. Competing interests: None declared |
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Vivien J Pomfrey, no paid work LAUNCESTON, Cornwall, PL15 9QW
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My contacts with other M.E./CFS sufferers suggests that they are actually more likely than average to have been extremely active rather than inactive, in childhood and in adulthood. Discussions with sufferers who are also Open University students (which of course may make them unrepresentative) have revealed that, of the seven people (including myself) who were willing to have their data analysed, six out of seven suffered separation from their mothers in early childhood, some temporarily but for significant periods, and some permanently. This led them to feel unwanted, insecure and anxious, often permanently, and several report feeling that however hard they worked they never felt appreciated. Such experiences are likely to have represented chronic stressors, possibly leading to the cortisol imbalance that is often reported. An acute stressor on top of this – a virus, toxin or emotional trauma – often seems to closely precede the onset of M.E./CFS. This does not mean that M.E./CFS is a psychological condition. It is known that psychological stress can depress the immune system and trigger a heart attack; this does not mean that immune deficiency and heart attacks are psychological conditions. Competing interests: None declared |
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Simon Lawrence, Chair - 25% ME GROUP KA10 6SQ
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Here we have the usual rhetoric of the psychiatrists who think they understand the problem - and even try to sound like they are acting in a caring way towards patients with myalgic encephalomyelitis, but in reality are just more interested in lining the 'pockets' of their own departments with funding from the Department of Health. I find many people in our Group were not idle, or folk who would often visit their doctor for years before being diagnosed with ME. As an example, I was my county's cross country champion; I sailed, played many sports and was seen as extremely fit, even as a young adult I would swim 50-100 lengths of my local swimming pool, but then suddenly I was struck down with a common flu and then later became severely affected after a tetanus booster. Many of our members have had similar experiences. We were not, and still are not idle people who 'enjoy' being ill. When will the Health Department and the MRC also make good the recommendations that were made in the CMO's Working Group Report that we should also have biological research into this condition? Until we do start this research these psychs will only continue to 'soak up' millions of pounds, which will be wasted on their flawed science! Competing interests: None declared |
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Jane C Colby, Poet A garret (at The Young ME Sufferers Trust), W B Yeats (deceased)
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This professor from Barts (friends at Kings)
Jane Colby FRSA Competing interests: None declared |
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Charles B Shepherd, Medical Adviser, ME Association 4 Top Angel, Buckingham MK18 1TH
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Earlier this year The ME Association organised a petition calling for urgent government-funded research into the physical cause of ME/CFS. Over 28,000 people signed this petition, which was presented to the Prime Minister. The front cover of our magazine depicts volunteers climbing up Ben Nevis to raise money for ME/CFS research. Such is the frustration of people with ME/CFS who do not believe that their views are being listened to by the medical establishment. So an editorial in the British Medical Journal (1) reviewing the possible causes of ME/CFS should be good news. But is it? Whilst many doctors will agree with a disease model involving predisposing, precipitating and perpetuating factors, Peter White's editorial provides a highly selective view of the evidence so far. Crucially, it fails to offer any innovative suggestions as to how this model could be used to develop a better understanding of the underlying physical cause of ME/CFS and so develop better forms of treatment. Instead, all that is offered in conclusion are two very familiar solutions: cognitive behaviour therapy (CBT) and graded exercise therapy (GET). And although these approaches have been of some help to some people with chronic fatigue, they are of no value at all, or may even be counter-productive, to others who come under the umbrella of ME/CFS. The medical profession has only itself to blame for the awful mess that currently surrounds ME/CFS. It has created an illness that covers a wide variety of fatigue state clinical presentations, with or without psychiatric co-morbidity, and almost certainly an equally diverse range of possible pathological and physiological explanations. Doctors who deal with patients suffering from unexplained abdominal pain, arthralgia, or headaches do not work on the basis that these all have the same pathoaetiology and will therefore respond to the same form of treatment. So why apply the same form of flawed logic to those with ME/CFS? And it should come as no surprise to find patients expressing their deep frustration when they are told that while £4 million is currently being spent on government-funded research into ME/CFS, this is all going into yet more studies on behavioural interventions, with nothing whatsoever going to causation. Yet there are numerous areas of research that could and should be persued: in particular the need to look at mechanisms involved in the production of debilitating fatigue in conditions such as multiple sclerosis, primary biliary cirrhosis, and ME/CFS - where the fatigue cannot simply be explained as being due to deconditioning. What we need is thought-provoking research which does not take the simplistic view that ME/CFS basically involves abnormal illness beliefs, abnormal illness behaviour, and the consequences of inactivity. The World Health Organisation now classifies ME/CFS as a neurological disorder in section G93.3 of their International Classification of Diseases (ICD10). The UK government agrees with this classification. So let's have a look at the neurology of ME/CFS for a change - instead of pouring yet more money into the bottomless pit of psychology. Dr Charles Shepherd Reference 1 White P. What causes chronic fatigue syndrome? BMJ 2004; 329: 928-929. (23 October) Competing interests: Physician whose ME was precipitated by chickenpox encephalitis and who used to be physically very active as a child as well as prior to developing this illness. |
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Stephen F Hayes, freelance GP Hampshire SO19
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Like other doctors, I understand that our medical science and research has limits, and never more so when there is nothing yet found to measure, as Dr White correctly states in the first paragraph of his review. I can relate to the frustration of CFS/ME sufferers, but wish that rapid responders could see that vituperative directed against honest (even if wrong) researchers is not going to take their case forward. If anything, looking at these responses the unbiased observer might conclude that there is a certain personality type that self diagnoses with CFS/ME and conclude that research into a physical cause and cure, given the blanks drawn so far, is a waste of time and money. This would be sad as quite clearly the absence of evidence of a physical cause is not the same as evidence of absence and clearly more research into this debilitating condition is necessary. Competing interests: None declared |
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Herman J. Oterdoom, retired surgeon none
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The never ending flow of publications gets a follow up in your edition of 23 October 2004 with two items. In 1949 I published my thesis in Dutch about the Cysts and Tumours of the Mediastinum. During that study I found that some tumours of the thymus gland did cause the "real" disease Myasthenia gravis pseudoparalytica about which an important eye-opening article appeared in the British Journal of Surgery, vol. 33: 201-214, 1946, by G.Keynes. There was also G. Keynes a.o. in Surgery, Gynecology and Obstetrics (suppl.) 84: 295-296, 1947. The patients were extremely fatigued but could temporarily be treated with injections of acetylcholine. It is a disease of the synapsis. But most cases were lethal in the end. Sometimes the removal of the tumour was the definite cure. In the Netherlands we had one surgeon and one neurologist in a provincial capital where the neurologist sent all his patients complaining about tiredness to the surgeon who removed the thymus and told us that he was successful much of the time. He even published with a lecture to the Dutch Surgeons in a meeting of the official club. But in the whole country nobody believed them and with their ending of the practice the operation was not done anymore as a routine as they did. All this took place around 1960. Now, I do not want to propagate their doings, but I want to speak out my wondering about the fact that the "real" sickness of myasthenia with the combination of a tumour of a really found tumour of the thymus is never mentioned in the steady flow of articles of this ailment, also called myalgic encephalomyelitis. One could try one injection of acetylcholine to see what happens or do an investigation of the thymus gland. More surgeons have been active in this matter, but the results were very disappointing. The whole story just faded away. But, given the nasty troubles in treating these patients, I would like to call attention to myasthenia, just to have the feeling for the treating physician: I have tried everything I could. Yours sincerely John Oterdoom, Groningerstraat 103
At the time at the Surgical Clinic of the Academic Hospital in Groningen. Now retired. Competing interests: None declared |
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Ellen C G Grant, Physician amd medical gynaecologist 20 Coombe Ridings, Kingston-upon-Thames, KT2 7JU
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Charles Shepherd is keen that the focus of reseach into the causes of ME should switch from epidemiology and psychology into neurology. I can not understand the reluctance of most neurologists to use the latest revealing biochemical tests. In the 10 years I spent working in the migraine clinic of a hospital neurology department, it became obvious that headaches were caused by adverse reactions to foods and chemicals, especially when zinc was deficient. Since then further biochemical investigations in headache and ME patients show that magnesium and copper deficiencies are also of prime importance. Why are the most important regulators of biochemical homeostasis, on which all life depends, being ignored in medical education and practice? Competing interests: None declared |
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Douglas T Fraser, musician London W6
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Editor, Stephen Hayes comments "...looking at these responses the unbiased observer might conclude that there is a certain personality type that self diagnoses with CFS/ME and conclude that research into a physical cause and cure, given the blanks drawn so far, is a waste of time and money......" If you follow the rapid responses on any "controversial" subject, there are usually a couple of responses attempting to cast aspersions at other correspondents. The nature of those responses typically take the side of the "authority" whose speculations are often being rightly criticised and questioned. Perhaps this is another "personality type" as there seems to be a certain uniformity and predictability to these responses ? Yours, Douglas T Fraser Competing interests: None declared |
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Angela Kennedy, Carer, University Lecturer and Researcher in Social Sciences Essex IG8 9QX
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Dr Hayes is incorrect in his comments: "...there is nothing yet found to measure, as Dr White correctly states in the first paragraph of his review." and "...the absence of evidence of a physical cause..." and "research into a physical cause and cure, given the blanks drawn so far, is a waste of time and money." In fact there is ample evidence, internationally, of organic physiological abnormalities in ME/CFS which HAVE been measured, and furthermore provide ample scope for further measurement. There is ample evidence in patients of organic physiological aetiology, even though this has yet to be wholly, "100%" explained (but this is also the case for most diseases). The Canadian ME/CFS Case Definition and Treatment Protocols (Carruthers et al, 2003) provide a good overview (though certainly not exhaustive) of some of these. Another document is the Hooper and Montague Paper. Another is the Williams and Marshall document. All are available, with full references, on the One Click Website. http://www.theoneclickgroup.co.uk There really is no excuse for doctors or others to maintain there is no evidence of physical cause of ME/CFS. There is also no excuse for researchers using the psychiatric paradigm to continue with incorrect, poor quality research (the 'wrong' that Dr Hayes himself acknowledges). The fact that this is still happening points to an urgent need for review, at the highest level, of the psychiatric paradigm and its evident discrepancies. With regard to Dr Hayes' rather cheap comments about 'self- diagnosing' personality types, this is an example of the unethical practice of armchair speculative psycho-analysis of people not met, for which doctors can be reported to the GMC. This also points to a fundamental problems ME/CFS sufferers have, because, far from being unbiased, such speculative psychoanalysers are basing their assumptions on ideologically-based subjective beliefs rather than proven facts, and therefore eventually reveal their claims to objectivity to be untenable. While offensive and prejudicial attitudes such as Dr Hayes' remain entrenched in the medical profession, there will be conflict between patients and doctors. To expect to be able to make sweeping, prejudicial statements about patients and not be criticised, is extremely naive at best. Both Dr White's and Dr Hayes' comments are extremely sweeping, easily challenged, and ultimately untenable. This will become more evident as international research continues to identify the organic processes of this disease. It is a shame that in the meantime, however, British research is being left behind, stuck in the vice of an ultimately flawed psychiatric paradigm. Of course, for British ME/CFS sufferers, it is a devastating tragedy. Competing interests: ME/CFS Patient Advocate, also Researching cultural myths of 'mind over matter'. |
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Derek Enlander, Physician 860 Fifth Ave. New York 10021
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Progress Determination in M.E. and Chronic Fatigue Syndrome After Professor White's determined editorial disputing the physical aspect of CFS (1) , I would like to further comment not only to argue that his opinion is misguided but to emphasise that there are more relevant aspects in M.E. /C.F.S. case management.. Making the diagnosis and then assessing and measuring changes is an essential to determine effects of any given treatment in any disease In Myalgic Encephalomylelitis (M.E.) or chronic fatigue syndrome (CFS) this is a particular problem. We have been deluged with criteria to determine the diagnosis, each adherent, whether here or abroad, seems to have political aspirations and party affiliation akin to a general election. We have The Ramsay’s M.E. definition (2) the London Criteria(3), the Fukuda4 the Australian, the Canadian , Oxford criteria ,the PACE group the list goes on. The Oxford criteria was defined self servingly by psychiatrists and does not recognise ME as a neurological disease. What has become blurred is that all of us, or should I say most of us, have the ideal of trying to help the patient who has profound lifestyle physical affects. If a patient is diagnosed via the London or Australian criteria or the Fukuda or the M.E. definition are they any more ill, any less ill, or are they not ill at all because a particular box has not been checked off. The soothsayers should universally amalgamate and come up with THE definition, call it what you will, the Queen of Sheba definition, something that will not institutionalize, nationalize nor offend any particular group. Maybe that is too ambitious to determine, having seen the egos that are arguing their point. But it should be an ideal the CFS politicians should unite and aim for. Now to the real point I wish to make. Whether we accept the notion that this is a physical disease or not, even though Wessely et al made a career of denying the facts. The problem of determining patient improvement or relapse is ultimate. Is the patient improving under a certain treatment? Various scales have been suggested in various diseases, Friedberg (5) makes comparison of the Chalmers (6), SF-98, the SF-36 (8) the Krupp (9) etc. Each has its failing. The definition of “fatigue” eludes most of us, there is no means of precisely measuring it, in fact comparison of fatigue levels is a problem. So much so that the various fatigue scales have been suggested. Some are based on verbal rating or numeric scales. We prefer a numerical rating scale of fatigue because we can synthesize a single score against time period to determine improvement or relapse. The patient compliance is extremely good, it is easy to administer and score. We researched the other Fatigue scales and learnt much from their determinants, and their ease or difficulty of use. The Chalder Fatigue Scale is a 14-item verbal rating measure of fatigue intensity(6) with a four-choice response format. It was developed with a small statistical population of 374 outpatients, from a internal medical outpatient department. Two dimensions, physical fatigue and “brain fog” (mental fatigue) were defined. Physical fatigue questioned “I get tired easily,” “I can no longer start anything” and “I feel weak,” while “brain fog” ,mental fatigue, asked questions referring to concentration and memory. The Fatigue Scale can show comparative sensitivity in a given time period with respect to treatment, workplace or environment change . The Chalder Fatigue scale has a low ceiling, so those having initial maximum scores indicating severe fatigue cannot record deterioration during a relapse. The Chalder Fatigue Scale main drawback is that it has difficulty in defining differences between primary and secondary depression. Secondary depression can be seen in CFS. The problem of determining this difference is an important diagnostic issue in CFS. Friedberg4 and Enlander (5) find a second factor analytic study of the Chalder Fatigue Scale in CFS patients which calls into question the stability of the factor structure of the scale. There are other scales each with their strengths and weaknesses, some are too difficult for the patient to use some are too superficial, some are too insensitive to defining the fatigue and motivation, others are difficult to score. SF-9 and SF-36 (8) Do not ideally define motivation and progress. There is also a charge for its use. The Energy/Fatigue Scale8 five questions with a five-choice response derived from the Rand Vitality Index Fatigue/Function Measures (8) This determination can blur progress if either the function or fatigue veer in alternate directions, which sometimes occurs The Fatigue Severity Scale (9) is composed of nine items with a seven- point response format. The Checklist Individual Strength (CIS) (10,11) is a 20-item self- report questionnaire that captures four dimensions of fatigue,(12,13) Fatigue Qualities Scale(14) contains 19-item, self-report descriptions of fatigue symptoms Freidberg and Jason(5) ask Is Fatigue Qualitatively Different in CFS? Fatigue scales have confirmed that subjectively rated fatigue severity is often higher in CFS than in other fatiguing illnesses. However, severity measures do not address qualitative aspects of the fatigue experience. CFS patients often describe unusual fatigue sensations that, according to a descriptive study of 313 CFS patients,11 may be useful in diagnosing the illness What is apparent then is that we need a simple patient scored table that can show improvement or relapse. We were given a grant by Orphan drug Co. to assess Xyrem (sodium oxybate) a new sleep medicine The Xyrem study will be published later. In order to determine the improvement in physical function and sleep habit we had patients fill out weekly a simple table. (fig.1) This was based on Friedberg and Chalmers work with nine questions. For completeness, simplicity and ease of division we added somewhat different questions and a tenth question. We added muscle fatigue, “brain fog”, stress, and insomnia to the question mix, and some of the London Criteria This Fatigue Severity Scale was be used to monitor change in fatigue weekly during the use of sodium oxybate (Xyrem) It has the specificity of being able to discern the primary depression case from the CFS patient. A most important determination in the face of the Psychiatric defamers. Fig 1 Fatigue Severity Scale Patients were asked to respond to each statement circling a number on a scale of 1 to 7, with 1 indicating “Untrue” and 7 indicating “True. 1 My motivation is lower when I am fatigued. 1234567 2 I just feel like doing nothing. 1234567 3 I am unable to concentrate 1234567 4 Insomnia is more apparent 1234567 5 I wake up tired. 1234567 6 I have difficulty carrying heavy things 1234567 7 My exercise tolerance has decreased. 1234567 8 Short term memory has decreased. 1234567 9 Fatigue interferes with work & social life 1234567 10 Recent Stress increased my Fatigue. 1234567 Score = Sum of responses divided by 10. Higher score indicates higher fatigue levels. ---------- References 1 White PD What causes chronic fatigue syndrome? BMJ 2004; 329: 928-929; 2 Ramsay, Melvin Post Viral Fatigue, The Saga of the Royal Free Disease, M.E. Assoc.1955, reprinted NY CFS Assoc. 2000 3 Dowsett E.G., Goudsmit E., Macintyre A., Shepherd C., et al., London criteria for M.E., Report from The National Task Force on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic Encephalomyelitis (ME). Westcare, 1994, pp. 96-98. 4 Fukuda K et al. The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine. 1994; 121:953-9. 5 Friedberg F and Jason LA. Understanding chronic fatigue syndrome: An empirical guide to assessment and treatment. 1998; Washington, DC : American Psychological Association. 6 Chalder T et al. Development of a fatigue scale. J Psychosom Res. 1993; 37:147-153. 7 Enlander, D, The CFS Handbook; CFS Assoc New York, 2002. 8 Ware JE et al. The MOS 36-item Short-Form Health Survey (SF-36) I: Conceptual framework and item selection. Medical Care. 1992; 30: 473- 483. 9 Krupp LB et al. The Fatigue Severity Scale: Application to patents with multiple sclerosis and systemic Lupus erythematosus. Arch Neurol. 1989; 46:1121-3. 10 Vercoulen JHMM et al. Dimensional assessment of chronic fatigue syndrome. J Psychosomc Res. 1994; 38; 383-392. 11 Beursken AJHM et al. Fatigue among working people: Validity of a questionnaire measure. Occ Envir Med. 2000; 57:353-7. 12 Vercoulen JHMM et al. The measurement of fatigue in patients with multiple sclerosis: a multidimensional comparison with chronic fatigue syndrome and healthy subjects. Arch Neurol. 1996; 53:642-9. 13 Prins JB et al. Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial. Lancet. 2001; 357: 841-7. 14 Dechene L et al. A qualitative fatigue scale for chronic fatigue syndrome. Paper presented at the meeting of the American Association for Chronic Fatigue Syndrome, Ft. Lauderdale, Fla. , 1994. Competing interests: Author of The CFS Handbook |
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Craig Coady, CAD Draughtsman G12
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Yet another concoction of important sounding cleverly thought out misconceptions and mis-interpretations creating an over all effect of mis- direction. Talk of co-morbid moods, shared learnt symptomatology whilst at the same time admitting the known involvement of various infectious triggers and also the common persisting infections suffered by CFS “patients”. Patients who are seemingly being treated by Dr’s for an illness that they physically cannot explain or understand, but psychologically, are able to infer certain similarities. Mix them up with terms like causative and symptomatic or pre and post infection and hey presto, physical issues can be attributed to genetic predisposition and a persons psychological personality traits. As some people grew up at a sedentary rate whilst suffering ill health as a child, then tarring all with the same brush in one article to explain all instances. There is in reality ample evidence showing numerous biomarkers consistent with so called CFS patients, just like there are biomarkers known to differentiate between so called CFS patients and Borreliosis sufferers. I use the term sufferer for currently they are not even recognised as needing to be classed as a patient. So I would ask what co-morbid mood disorder is at play to bring about three successive infectious disease doctors to misinterpret these biomarkers and clinical symptoms as M.E. or CFS or the latest one to be discovered “Post Lyme Syndrome”. Granted there are many similarities in symptoms associated with both CFS and Borreliosis, but even when positive Western and ELISA blood test results are achieved the sufferers are still termed as experiencing CFS like symptoms and offered counselling rather than treatment. Treat the patients physical symptoms first and lets leave personalities out of this all to important issue. Competing interests: None declared |
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Karen Glanville, Research fellow University of Plymouth, UK
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I am so sorry to disappoint all the psychiatrists out there who feel they have ME/CFS neatly tied up, but it is NOT a psychiatric illness! I myself have suffered from the disease for four years. I was not sedentary as a child, nor as an adult, in fact just 6 months before my symptoms started I ran a half marathon in 2 hours 10 minutes. My symptoms started with a glandular fever type virus, a few weeks after receiving a contraceptive injection. At the time I was 2 1/2 years into a PhD, and as I said, fit, active and healthy. Suddenly I could not do the things I had always done - I could no longer go running, or swimming, or belly dancing, without tremendous feelings of tiredness and pain for days afterwards. I was lucky in that I had a good GP who sent me for tests for everything she could think of, but then when she decided it was probably ME, sent me to a psychiatrist, who tried to talk to me about the problems of my childhood (there were none). Due to perseverence, 4 years later I have just finished my PhD, by making myself study for sometimes just 10 minutes a day, even when I was not strong enough to wash my own hair, or bath myself. The brain fog often meant that I spent the whole 10 minutes re-reading what I had read or written the previous day, but that did not matter to me - I was determined to finish my doctorate. I am now able to work part-time ( 2 1/2 days a week) and am much stronger than I have been for 4 years, but I still get tired very easily and if I do not listen to my body's signals then my glands visibly swell, and I am confined to bed for a few days. The only thing which I have found helps me is ENADA NADH - unfortunately this is not available on prescription, and costs me £30 a month, but I cannot put a price on regaining some of my health. Please, please, researchers into ME, realise we are not lazy, nor are we simply introspective hypochondriacs, but we are suffereing form a real, phsyical illness, and beating our heads against a brick wall when it comes to getting our voices heard. Yours sincerely, Karen Glanville Competing interests: None declared |
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Denise M. Swanteck, housewife 07070
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The people conducting this study have mistaken the results of CFS for the causes--inactivity, deconditioning, greater effort required for minor tasks, awareness of their pain and mind fog. This would seem to indicated that feeling your own pain, being tired, and confused cause CFS patients to behave as if they are sick. It's the same "all-in- your-head" line patients get from doctors who simply do not want to believe CFS exists or that we are really sick. This absolved these doctors from having to do anything for us. I was very physically active outside of school, from a middle class family and never had any long-standing condition is childhood (except for mono in high school about 4 weeks). I was slow-onset in adulthood and had to stop working at 30 but wasn't diagnosed until 38. I continued to exercise some even when I was sick until three years ago. For years after I stopped working I underestimated how much physical or mental effort tasks would take me. (Push/crash approach to energy management in CFS) Although it is dressed up as research, it is another excuse to dismiss CFS as a psychological disorder and its sufferers as hypochondriacs. The authors of the study betray their bais in the factors they chose to focus on and which they chose to exclude, primarily, perception of illness and pain and activity. Competing interests: None declared |
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Philippa V Sutton, Disabled by ME Newcastle upon Tyne
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I think Peter White's editorial could, with a little help from Plain English translators be shortened. It says, "With some people, if they get a nasty bout of flu, they feel really groggy afterwards. Then hypochondria (which we call 'interoception' to make it look less offensive) and idleness (called 'learned sedentary behaviour' for the same reason) cause them to make a career of it. They call it 'M.E.' to heighten the effect. Of course, if they've been ill or lazy in childhood they know all about playing for sympathy. Make them do some keep fit classes and give them a good talking to. That usually sorts them out - or at least shuts them up." So that's all right then. Competing interests: None declared |
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Trudy A Allen, Manager within a county-wide charity Battle TN33 0AE
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I read with interest that it's possible that I developed M.E. as a result of being a lazy cow when I was a child and because I may be pre- disposed to psychological difficulties. I was interested,particularly because I regularly competed as a Long-distance runner for my school and went on to fall in love with surfing and kick-boxing, both high intensity and energy sapping sports and two things I can no longer do. In fact I only stopped being able to surf in the last 18 months, despite the ME, having been able to live off the fitness levels and flexibility I'd built up from my kick-boxing. Three weeks ago I went for a Cognitive and Psychological Assessment (Oct 2007), part of the programme my Health Authority encourage those with ME to attend, to be told "well, there's nothing wrong with your mental health is there!" and "If it wouldn't put your health at risk I would ask you to come along and facilitate our Cognitive Behavioural Therapy Groups". I manage my condition by being aware of what it does to me when it's at its worst. 8 months after diagnosis I took a year out, not from working, but from having a life outside of work. I paid attention to my diet and started popping B-Complex &B12 and Vitamin C. Even now I sometimes have to cancel social activities or borrow a friends bed for a short snooze. Sometimes I have to tell people I will telephone them back another day, because it hurts to listen or because I cannot take in any more information that day; "computer says no". So the thought that there's a possible link between a sedantry life- style as a child and depression for me is amusing and probably, if I dwelled on it, it would also be insulting. Thankfully, I have an enlightened GP who was the one to recognise the symptoms and send me for the various tests I needed for the diagnosis. She recognised that my repetitive illnesses stemmed from a virus - interestingly someone from the same office also went down with the virus at the same time and was left unable to work - her GP diagnosed and treated her for depression - she is still not working nearly 5 years later and was still being treated for depression even though she doesn't think she is depressed. She's now going to go back to her GP to address this. There was another part of the study that stood out; I do lay claim to being a highly intelligent and well-educated female at the top of her profession - naturally! Obviously, if there are any spelling mistakes in this I put it down to my ME-dsylexia/brain fog Competing interests: Diagnosed with ME in 2003 |
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