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Denigration By Design
Appendices
Appendix I Appendix II Appendix III Appendix IV Appendix V
The Views of Dr. Simon Wessely on M.E.: Scientific Misconduct in the Selection and Presentation of Available Evidence? Eileen Marshall and Margaret Williams Warwickshire, England
It is widely acknowledged in the peer-reviewed medical literature that patients with myalgic encephalomyelitis (M.E.), otherwise known as chronic fatigue and immune dystunction syndrome (CFIDS) or chronic fatigue syndrome (CFS), suffer froth an organic illness which is not psychological or psythiatric in origin. Persons with M.E. are particularly vehement on this point because they know from experience that selective symptoms which point to an organic etiology are simply ignored by many in the medical community because of ignorance or bias. One of the prime offenders in this category is the British psychiatrist Dr. Simon Wessely. It is very distressful that Wessely appears to be quite unstoppable in his blind determination to claim that M.E./CFIDS is nothing more than a primary psychiatric disturbance. The only United Kingdom government- funded research on M.E./CFIDS has been a small grant to the Medical Research Council, which went toward Wessely's research into the psychiatric aspects of M.E./CFIDS. In addition, Wessely has a seemingly uaassailable influence on the U.K. Department of Health and the Department of Social Security, and the misinformation he is propagating is causing immeasurable risk and hardship to sufferers of M.E./CFIDS. His influence does not stop at the U.K. border, however. Wessely has recently been in the United States doing his utmost to alter the Centers for Disease Control and Prevent~on (CDC) criteria fcr CFS by trying to get the case definition turned wholly away from an organic etiology. All M.E./CFIDS patients should be adequately informed about the nature and extent of the damage Wessely has done to them and to the image and public perception of this condition by his many publications in the medical literature. We know that the accuracy of his quotations is not an issue, as all have been published by Wessely and his close associates. "Maladaptive Coping Strategies" Despite his claim that he does not want to get into the 'organic' versus 'functional argument,' Wessely has done perhaps more than anyone else to fan this particular flame. He believes that M.E. (or CFS as he prefers to call this disease) is merely one end of a continuum of tiredness" as experienced by everyone at some stage in their lives, and that the prognosis of those who succumb to M.E. may "depend on... maladaptive coping strategies."11 In other words, Wessely seems to be saying that M.E. is nothing more than an attitude problem experienced by suggestible people who are poor copers and who see the label of M.E. as an easy escape route from life's problems. Wessely compares M.E. with neurasthenia, the late 19th century psychiatric disorder. He writes that neurasthenia "provided the most respectable label ... one which conferred many of the benefits ... and fewest of the liabilities ... associated with illness. There is little evidence of any change in the current era [of M.E."]"3 Unfortunately and probably due to the input of doctors like Wessely, M.E. definitions have recently centered on the symptom of fatigue instead of on the original definition by Ramsay, which focused on the rapid muscle fatigue after minimal exertion. Fatigue is too vague and common a symptom on which to base any definition, but it fits the aims of psychiatrists like Wessely who want to link M.E. with depression. Wessely's Scientific Methods Wessely is a most prolific author, and to support his own views on the nature of M.E. he relies heavily on his own opinions; for instance, in his chapter in a recent neurological textbook4 he uses no less than 31 self-references. Most mainstream medical journals will permit no more than two self-references in an article. The extrapolations which Wessely makes from his own research findings simply do not carry the weight to support his conclusions. For the most part it seems he has reached his conclusions before generating his data. One of his studies included only 47 patients, yet from this small sample Wessely's major conclusion is that "an alternative hypothesis is that all cases of CFS can be explained by disorder of mood." In truth, this trial is too small to be of any practical use and, by his own admission, his methodology was flawed. Therefore his conclusions are baseless and arbitrary. Even so, this study continues to be quoted by Wessely as a paper of substance in the M.E./CFS literature, as it was published in the prestigious Journal of Neurology, Neurosurgery and Psychiany. This would undoubtedly convey considerable acumen if one of his colleagues had not let it be known that most of the reviewers for this journal are closely connected with Wessely and that Wessely himself is the referee on M.E. for this jounnal (although he would not have~ been permitted to review his own work). We understand that he also holds this position for the British Medical Journal, The Lancet and various other peer-reviewed journals. The Referees' Role Normally, the identity of referees who perform peer-reviews is never revealed, but there has been such concern over the abuse of the referees' power to wield undue influence that Professor Peter Sleight head of cardiology at the John Radcliffe Hospital in Oxford, stated "Peer review is 50 percent garbage, 50 percent malice md 10 percent good advice" at a recent Royal Society of Medicine meeting.6 Professor Sleight went on to claim that "many [referees] actually steal data and hold up publication while they publish it as their own research." The role of referee on any particular subject carries enormous responsibility because he or she decides what gets published and what gets rejected. If the journals are flooded with enough articles which reinforce concepts of a particular disease, and when many of the articles have been written by a single author, then two things happen. One is that the ideas and conclusions repeatedly put forth gradually become accepted as facts; the other is that the prolific author becomes thought of as an "expert" merely by virtue of the sheer volume of his or her published works. It would then be natural for such a prolific author to be sought out as the expert of choice by lawyers, for instance. Professor Sleight told the Royal Society of Medicine meeting that for his part, he prefers writing his own detailed press-releases rather than relying on the discredited peer-review system.6 Railroading the Opposition Of more importance than his own personal views about M.E. is Wessely's treatment of other people's genuine research into M.E.: he repeatedly ignores, dismisses or trivializes any evidence which does not accord with his own views. When he reviews the M.E. literature, he makes factual errors (which lend support to his own theories) and he distorts other people's accounts. For example, in one article,7 Wessely reduced the duration of the 1955 Royal Free Hospital epidemic from the actual three months by claiming that it lasted from one day to one month. He bases one argument on a 1970 review of this epidemic written by McEvedy and Beard,8 who claimed that this outbreak was simply mass hysteria, even though they had only reviewed old case notes and failed to interview a single patient. Wessely states that MeEvedy and Beard felt that the use of the name "benign myalgic encephalomyeliis" in this epidemic served to reinforce the outbreak. However, that name was not even coined until 1956, well after the end of the outbreak, so it is unlikely that it could have influenced the course of the epidemic. Further, there is no such reference by the original authors in the McEvedy and Beard paper. More recently, when discussing the persistence of viruses, Wessely writes that even if a virus manages to evade the host response, "the immune system still responds in such a fashion as to indicate the presence of the virus. Evidence of any of these processes has not been provided in CFS."' The fact that Wessely chose to ignore the extensive evidence found by Landay, et al.;10 Klimas, et al.;11 Morrison, et al.;12 Chao, et al.;13 Jones, et al.;14 and Buchwald, et al.15 does not mean that there is none, it only means that Wessely, is usual, restricts his references to a biased and personal selection of the evidence which is available. This is but further evidence that Wessely continues to dismiss he findings of other M.E. researchers which clearly give credence to the organic etiology of this disease; in the past he has dismissed such findings as 'artifacts,' presumably because the findings do not fit his own model in any way. It is known that Wessely has refused to acknowledge other researchers' results, claiming that those results were simply caused by "interpreter bias," and that all laboratory data is meaningless because it is open to subjective interpretation.16 It is surely noteworthy that Wessely consistently fails to admit the duplicity of his stance, since most psychiatric diagnoses are made on the subjective opinion of the psychiatrist. A report commissioned by an M.E. patient association found that one of Wessely's primary dismissal techniques is to claim that the evidence in favor of organic causation relied on "sophisticated" techniques like polymerase chain reaction (PCR) and MIURI scans. This report found that most of Wessely's articles do not present a balanced or accurate picture of the literature on M.E./CFS. Wessely's Words In order to lend support to the above observations, we have reprinted a selection of quotes from Wessely's own published work below. 1 David AS, Wessely S, Pelosi AJ: Postviral fatigue syndrome: time for a new approach. British Medical Journal 5 March 1988:690-699. "Future investigations and clinical practice must take into account the similarities between the symptomatology of the post-viral fatigue syndrome and that of common psychiatric disorders in the community." 2 Wessely S: What your patients may be reading. British Medical Journal 1989;298:1532-3. "Beard and Mitchell have returned to obscurity, but their disease is back with a vengeance. My local bookshop has just given M.E. the final seal of approval, its own shelf." "...a little more psychology and a little less T cells would be welcome..." 3 Wessely S, David A, Butler S, Chalder T: Management of the chronic (postviral) fatigue syndrome. Journal of the Royal College of General Pracritioners:1989;39:26-9. "Many patients referred to a specialized hospital with chronic fatigue syndrome have embarked on a struggle. This may take the form of trying to find an acceptable diagnosis, or indeed, any diagnosis. One of the principal functions of therapy at this stage is to allow the patient to call a halt without loss of face." "[M.E. patients are in) a vicious circle of increasing avoidance, inactivity and fatigue." "... there is no clinical evidence that allergies exist in anything but a small number of sufferers, and their existence may be coincidental." 4 Wessely S, Powell R: Fatigue syndromes: a comparison of chronic "postviral" fatigue with neuromuscular and affective disorders. Journal of Neurology. Neurosurgery and Psychiatry 1989:52. "Seventy two percent of the CFS patients were cases of psychiatric disorder." "Any abnormalities in muscle structure or function may... result from physical inactivity." 5 Wessely S: Chronic fatigue and myalgia syndromes. In N. Sartorius, et al. (eds.) Psychological Disorders in General Medical Settings. Hogrefe & Huber; 1990. "Most CFS patients fulfill diagnostic criteria for psychiatric disorder." "Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. Do any of these symptoms possess diagnostic significance? The answer is basically negative." "...this suggests that, despite frequent claims to the contrary, these are not immuno-deficiency syndromes, nor is active viral infection a likely factor." "The description given by a leading gastro-enterologist at the Mayo Clinic remains accurate: 'the average doctor will see they are neurotic and he will often be disgusted with them."' "... it is of interest that the 'germ theory' is gaining popularity at the expense of a decline in the acceptance of personal responsibility for illness. Such attribution conveys certain benefits... in other words, there is avoidance of guilt and blame." "It is this author's belief that the interaction of the attributional. behavioral and affective factors is responsible for both the initial presentation to a physician and for the poor prognosis." 6 Wessely S, Thomas PK: The chronic fatigue syndrome myalgic encephalomyelitis or postviral fatigue. In C. Kcnnard (ed): Recent Advances in Clinical Neurology no. 6. Churchill Livingstone: l 990;85-132. "A number of patients diagnosed as having... myalgic encephalomyclitis were examined by one of the authors of this chapter.... In many of them the usual findings of simulated weakness were present." "... many physicians may not be familiar with the range and severity of the symptoms of major depression." "The epidemic may have resulted from a combination of altered medical perception and a floating numerator." "... efforts are often made to over-interpret laboratory findings." "Over-enthusiastic espousal of new illness can... be harmful. ... It may legitimize some of the maladaptive behavior already described." Note: In the above article, Wessely uses 31 self-references throughout his text. 7 Powell R, Dolan R, Wessely S: Attribution and self esteem in depression and chronic fatigue syndromes. Journal of Psychosomatic Research 1990:34:6:665-67). "... this research shows that in CF'S [compared to depression, the patients] experience less guilt such an external style of attribution has certain advantages; external attribution also protects the patient from being exposed to the stigma of being labelled psychiatrically disordered ... [and] may lead to helplessness ... and diminished responsibility for one's own health.... Our results are close to those predicted by the 'learned helplessness' theory of depression." "Such 'inappropriate' referrals to physicians can lead to extensive physical investigations that may then, perpetuate the symptom paterns of physical attributions." 8 Wessely S: Editorial. Journal of Neurology, Neurosurgery and Psychiatry 199154:669-671. "Studies of dynamic muscle function have demonstrated essentially normal muscle strength, endurance and fatiguability, other than as a consequence of physical inactivity.
"Continuing attribution of all symptoms to a persistent 'virus' preserves self-esteem."
"Having established the high prevalence of psychiatric disorder, particularly affective disorder, in patients with CFS ...". "Given the well-known links between... depression and the immune system, it is not surprising that a host of immunological abnormalities continue to be reported in association with CF'S." "Although there were preliminary well-publicized reports... of increased levels [of interleukin 1] in the serum of some CI'S patients, this could be accounted for by elevation known to rise following exertion in normal, unfit subjects." "The study established that the injunction to rest ... is rarely in the patients' best interests." (Note: Wessely was referring to his own study). "The importance of psychiatric illness in CI'S is now clear." 11 Wessely S: The psychological basis for the treatment of CFS. Pulse of Medicine 14 Dcc 1991;58. "The prognosis may depend on ... maladaptive coping strategies and the attitude... of the medical profession." 12 Lewis G, Wessely S: The epidemiology of fatigue: more questions than answers. Journal of Epidemiology and Community Health 1992;46:92-97. "We suggest that many patients currently labelled as having 'CFS' ... may lie at the extreme end of a continuum that begins with the common feeling of tiredness." Studies usually find a high prevalence of psychiatric disorder amongst those with CI'S, confirming that physicians are poor at detecting such disorders." 13 Wessely S: Chronic fatigue syndrome: current issues. Revie 'vs in Aledical .tlicrobtology 1992;3:21 1-216. "Validation is needed from the doctor... once that is granted, the patient may assume the privileges of the sick role (sympathy, time off from work, benefits, etc.)." 14 Howard LM, Wessely S: The psychology of multiple allergy. British Medical Journal 25 Sept 1993; 307:7474-748. "Many people present to their doctors with multiple unexplained symptomatology which they attribute to allergy.... Those at the extreme end of this range often attract a diagnosis of total allergy syndrome, multiple chemical sensitivity or environmental illness - diagnoses that most allergists or immunologists repeatedly reject. If the problem is not one of allergy then what are the possible causes? Research has shown the relevance of psychological disorder." "A recent ....... confirmed that ... psychological symptoms were a central component of chemical sensitivity." "Inherent in the concept of allergy is the avoidance of any blame. Sufferers from allergies feel no guilt about their condition and are not subject to any moral sanction." "Sufferers from mysterious conditions that lie outside conventional medical practice no longer consider themselves to be oppressed by spirits and demons but by mystery gases, toxins and viruses. This is particularly visible in the changing nature of mass hysteria." 15 David A, Wessely S: Chronic fatigue, M.E. and ICD 10. TheLancet 3 Nov 1993:1247-8. "The inclusion in the tenth revision of the International Classification of Diseases ([CD 10) of benign myalgic encephalomyelitis as a synonym for postviral fatigue syndrome under Diseases of the Nervous System seems to represent an important moral victory for self-help groups in the UK.... it is unlikely to lead to advances in our understanding of the condition, ... The nineteenth century term neurasthenia remains in the Mental and Behavioral Disorders chapter under Other Neurotic Disorders. ... Neurasthenia would readily suffice for M.E." "Applying more stringent criteria for CFS in the hope of revealing a more neurological subgroup succeeds only in strengthening the association with psychiatric disorders."' "We believe that this latest attempt to classify fatigue syndromes will prevent many people from seeing the world as it actually is. 16 Pawlikowska T, Chalder T, Wallace P, Wright DJM, Wessely S: Population based study of fatigue and psychosocial distress. British Medical Jaurnal'19 March 1 994;308:?63-766. "In recent years, fatigue has attracted renewed attention, largely because of the prominence given to the chronic fatigue syndrome... the infective characteristics may, however, be the result of referral patterns and illness behavior and not intrinsically related to the chronic fatigue syndrome." "The chronic fatigue syndrome may represent a morbid excess of fatigue rather than a discrete entity. ... The definition may have arisen as a result of referral patterns to specialists." "Numerous... studies have found associations between chronic fatigue syndrome and psychiatric diagnoses ... muscle pain was also related to psychological morbidity." 17 Mac Lean G, Wessely S:Professional and popular views of chronic fatigue syndrome. British Medical Journal 19 March I 994;308:776-777. "We have found that the British media tend to favor an organic cause for the syndrome. Much of the press coverage of the chronic fatigue syndrome shows a lack of understanding of psychological medicine and its practitioners." In conclusion, Wessely continues to ignore or dismiss the massive world-wide evidence of organic abnormality in M.E., presumably because the findings of M.E./CFIDS researchers and the evidence which has now been accumulated conflict with his own model of this disease. Through his modification of scientific data, Wessely is waging a war against the thousands who live and work daily with this devastating condition. This can only be judged as scientific misconduct. References
4. Wessely S, Thomas PK: The chronic fatigue syndrome - myalgic encephalomyclitis or postviral fatigue. In C Kennard (ed): Recent Advances in Clinical Neurology No. 6. Churchill Livingstone:1990;85-132. 5. Wessely S, Powell R: Fatigue syndromes: a comparison of chronic 'postviral' fatigue with neuromuscular & and affective disorders . J Neurology, Neurosurgery and Psychiatry 1989;52.
7. Wessely S: Mass Hysteria: Two syndromes? Psychological Medicine 1987:17:109-120.
Simon Wessely Follow-up I was deeply saddened by the artide that you carried in the Spring '94 issue of The CFIDS Chronicle devoted to my work on CFS/ME (myalgic encephalomyletis). I do not intend to reply to the distasteful personal comments in the first half of the article. Instead I would simply ask your members to obtain the actual copies of my papers and read them from start to finish. I would be surprised if, having read them, they do not come away with a rather different opinion of my views on CES. I think an impartial observer would conclude I treat CFS with great seriousness and CFS patients with cornpassion and dignity. I would only ask them to read the articles in full and not rely on misrepresentation and selective quotations. What concerns me more is the view that l am "waging a war' against patients with CFS/ME. I run a small, but active, research unit concerned solely with CFS. At the moment we are carrying out inquiries into the endocrinology, epidemiolqgy, immunology, neuropsychology, psychiatry, treatment and virology concerning this condition. I frequently act on behalf of CFS/ME sufferers in their dealings with insurers and the courts - indeed, I was the principal expert witness in two recent medico legal cases concerning CFS. In the first, the sufferer was awarded £160,000 and the second £320,000. These are the only two cases of their kind in the U.K. Most important of all is that I run the only free service solely dedicated to the needs of patients with CFS/ME that operates between the River Thames and the Coast. I personally see between 2 and 3 new patients with ME every week, free of charge. Because of our efforts our Health Authority is, as far as we know, the only Health Authority that has now made a contract. Research has shown that our rehabilitation programs are proving successful in decreasing the suffering and improving the general health of CFS/ME patients. If I am indeed "waging a war", as your correspondents put it, this is a very funny way of going about it.
Dr. Simon Wessely Senior Lecturer in psychological medicine, King's College; London (The CFIDS chronicle does not have "correspondents". Each article represents the opinion of ihe author, as stated in each issue. With the exception of the Association's profissional staff, all Chronicle authors are volunteer contributors and are not paid for their services. It should be noted that many people in England differentiate between "CFS" which, in their view, describes the common symptom of unexplained fatigue, and "ME" which they feel is synonymous with the U.S. term CFIDs. - Editor) Having been afforded the opportunity to respond to Dr. Simon Wessely's letter, we wish to make the following points in response. We read his letter with interest, and we hope people will read his published works in full and let his articles speak for themselves. In addition, we recommend that readers compare the artides he references in those works with a comprehensive search of the available literature. Wessely states that he was "principal expert witness in two recent medico legal cases concerning CFS". In fact, he was 1 of 3 medical expert witnesses in both cases and the £320,000 was an out-of-court settlement. The £162,500 was awarded in the High Court in December 1992. It was subsequently withdrawn by three appeal court judges who accepted Dr. Wessely's testimony, in which he suggested that the plaintiff (a diagnosed ME patient) was "'suffering from at least some degree of psychological disorder". This statement was prepared based only on a review of medical records, and not from an examination of the plaintiff. The statement that "these are the only two cases of their kind in the UK" is misleading, as there are at least seven other such cases which have been or currently are going through the British legal system. Apart from the legal system itself, it is important to note that patients with "psychological illnesses" are barred from receiving the higher rates of sickness benefit (InterAction 1994:15:55). Wessely writes "most important of all is that I run the only free service solely dedicated to the needs of patients with CFS/ME". In the UK, there is a National Health Service; this means that all patients can receive treatment "free of charge". We wish to point out that there are numerous other NHS consultants who run clinics specifically for ME patients in many regions throughout the UK, including the area "between the River Thames and the Coast." Dr. Wessely states that "at the moment we are carrying out inquiries into the endocrinology, epidemiology, immunology, neuropsychology, psychiatry, treatment and virology concerning this condition". To our knowledge, there have been no endocrinologists, immunologists or virologists co-authoring papers with Wessely, but we await with interest the results of this collaboration. He also claims that "research has shown that our rehabilitation programs are proving successful in decreasing the suffering and improving the general health of CFS/ME patients" but he admits that he does not recognize ME/CFIDS as a distinct entity, but includes all people with unexplained clironic fatigue under the single label of CFS. Therefore, we have no accurate idea of how many of his patients actually have ME as distinct from unexplained chronic fatigue. Thus his statement about the effectiveness of his rehabilitation programs needs to be questioned, since patients who do not have ME may well improve with his treatment strategy of cognitive behavioural therapy (CBT), graded exercise and antidepressants. In his paper "Chronic fatigue syndrome: a follow-up study" (Journal ofNeurology, Neurosurgery and Psychiatry 1994:57:17-21) Wessely neglects to refer, in either the text or his references, to the Lloyd, et al. study on CBT and graded exercise, which failed to find that such a "rehabilitation program" was of any benefit whatsoever to ME patients (Lloyd, et al.: Immunologic and psychologic therapy for patients with CFS: a double-blind, placebo-controlled trial. (American Journal of Medicine 1993:94:197-203). There is yet to be a published controlled study which has shown this type of rehabilitation program to be beneficial in ME. While his own (uncontrolled) study suggests that his program is helpful to people with chronic fatigue, the unusually large dropout rate means that his results are difficult to interpret. Furthermore, it would be normal practice for Wessely to get his patients via a psychiatric referral from a primary care physician. In our view, such patients are not necessarily representative of ME patients. Also, we know that many ME patients have been referred to other psychiatrists and have come out with a clean bill of mental health despite remaining severely ill. On 12 May 1994, Dr. Wessely gave a lecture at The Institute of Psychiatry called "Microbes, mental illness, the media and ME: the construction of disease". Some of Wessely's comments, which clearly express his views on ME, follow: "I am going to talk not about an illness, but about an idea ...... I will argue that ME is simply a belief that one has an illness called ME. The label [ME/CFIDS] spread with even greater alacrity in the States and it is now firmly established. Why?. What lies behind all this talk ofviruses and immunity? ... In consequence, talk of viruses and the immune system is now deeply embedded in popular consciousness ... these link:s are made entirely explicitly in the States". ... "Does it really matter if the 5-HT neurotransmission is enhanced (that's CFS) or suppressed (that's major depression)... what's a little up- or down-regulation among friends?" ... "Depression is not the only threat facing the self esteem of the ME patient ... there is another condition with which ME might easily be confused, and it is hysteria." "Viruses are an attribution free from ....... there's no blarne, no shame and no stigma... and here is the virus research doctor himself to protect us from that shame ... and what is it he delivers? Respect!... We can therefore understand the delight when another sufferer found out she had a low IgG, probably of no significance, but she knew that the difference between a crazed neurotic and a seriously ill person is simply a test.... Nancy Kaiser [the first Ampligen patient] also rejoiced [when diagnosed], but before then she had to visit 211 doctors ...you think she might have given up, don't you after 100... doctors are still the main passport to acceptance and validation of suffering, not least because we control access to support and benefits ... so Nancy Kaiser got her respect, but at what price?" 'Doctors are entitled to express their scepticism about the status of the diagnosis, and even to suggest that these illnesses are already adequately covered in the psychiatric classifications". Our own experiences with ME have led us not to share Dr. Wessely's views about it. In addition, Wessely's own colleagues at the Institute of Psychiatry disagree with his view that "viral attribution [reflects] somatization par excellance". They state: "We found no evidence to support the somatization hypothesis." (Both quotes from Cope H, David A, Mann A: Maybe it's a virus?: Belief about viruses, symptom attributional style and psychological health. Journal of Psychosomatjc Research I 994;38(2):89-98.) Furthermore, it is sadly true (and we believe it can be readily demonstrated) that Dr. Wessely has indeed changed the facts about ME, that he has indeed misrepresented the valid findings of other ME researchers and that he does ignore important findings which do not support his own views. Bearing this in mind, we feel justified in querying whether or not this amounts to scientific misconduct.
Eileen Marshall Margaret Williams I am writing to express my concern over "The Views of Dr. Simon Wessely on ME" in the Spring '94 issue of The CFIDS Chronicle and to ask you to print an apology. My concern is that the article goes beyond the bounds of responsible journalism by accusing Dr. Wessely of "scientific misconduct." It is one thing to criticize his views, quite another to make accusations which could be implying professional misconduct. The article suggests that Dr. Wessely has an unbalanced and one-sided view of ME and that his views and publications have done much damage to ME/CFIDS patients. Extensive evidence is produced purporting to show that Dr. Wessely 5 views are one-sided. Whether or not these contentions are true, The CFIDS Chronicle certainly has the right to publish them. If they are true, then the Chronicle is providing a valuable service both to science and to ME/CFIDS patients by publishing them. If they are not true, then it is up to Dr. Wessely or others to rebut them. Had the article been content to draw the line there, this letter would not have been written. But the article goes on to accuse Dr. Wessely of "scientific misconduct". This is a quite different and, in my view, completely inadmissible accusation. One-sided views are common in science and medicine, also in philosophy, religion, the arts and most areas of human endeavor, especially where there is still much uncertainty. Balanced views are always the ideal, but not all practitioners manage to attain them. Failure to achieve balanced views is not a crime, nor does it imply professional misconduct. Hence, even if Dr. Wessely's views are onesided, it is not appropriate or admissible to make the much more serious accusation of "scientific misconduct". There is a further serious aspect to this matter. It is possible that the article could be considered by the British courts as defamatory under British laws. Hence, it is unlikely that any British publisher would be willing to publish it unless they were willing to go to court". It also means that Westcare, which has been circulating The CFIDS Chronicle in Britain, could risk liability to prosecution - a risk which Westcare as a small, independent charity cannot entertain. I write, therefore, to express my concern and to ask that you print an appropriate apology to Dr. Wessely in your next issue.
Richard Sykes; Director, Westcare Dear Mr. Sykes: Please understand that we have not taken your letter or its implications lightly. We do regret any hard-ship this has caused you as an independent distributor of 35-40 copies of each issue of the Chronicle in England, but we offer no apology. All articles in the Chronicle represent the opinion of the author(s); this is clearly stated in the disclaimer on the inside front cover of each issue. Further, we believe that the authors of this article made articulate arguments when drawing their conclusions. You maintain that one-sided views are comrnon and acceptable in science and medicine and, in so doing, you seem to miss the authors' point. How has Dr. Wessely reached his "one-sided view'? With an open mind, honest investigation and authentic use of the scientific method? The authors contend not. And, if they are correct, he may indeed be guilty of scientific misconduct. We appreciate that you took the time to express your opinion. If Westcare feels that it will be unable to distribute the Chronicle in the future, we will miss your support. However, we do offer foreign memberships in the Association and encourage all our British readers to join so that they may continue to receive uncensored information. - Thc editors NB. Wessely personally threatened Westcare with an injunction unless they removed the article before sending out the Chronicle in the UK, which Westcare duly did, as they were in fear of Wessely's threatened legal action. This was personally confirmed by Richard Sykes to the authors. People then complained that copies for which they had paid in advance had been defaced. Summer 1994
Research shows clear differences between subgroups of "chronic fatigue syndrome" (CFS).
Chronic Fatigue Syndrome The term CFS was coined in 1988 by Dr Gary Holmes of the CDC as a replacement for the term Chronic Epstein Barr Virus Disease (the name used by some USA physicians until it was realised that EBV was not the only virus associated with this illness). It was based on a single symptom found in those affected by the 1984 outbreak of ME at Lake Tahoe, Nevada. "CFS" has since become an umbrella term much favoured by certain psychiatrists, particularly those of the "Wessely School" and by others who find it a less challenging option. The term "CFS" has given rise to much confusion, especially since Wessely et al broadened the definition criteria (Oxford, 1991) to include all categories of unexplained "fatigue". In the UK, it encompasses disorders other than ME, including undiagnosed hypothyoidism, masked depression, and disorders related to lifestyle and nutrition. In America, stricter crtieria select a more homogeneous population, so some US studies on CFS are undoubtedly looking at true ME. (For a more comprehensive explanation, see Appendix V to the original Denigration by Design?). Despite Wessely’s obsession with reductionism, on scientific grounds it is helpful and appropriate to consider the differences between sub-groups.
Myalgic encephalomyelitis (ME) This is one specific subgroup of the many chronic fatigue or post-viral syndromes. It is a multi-system disorder and is primarily neurological (affecting not only the central nervous system but also the autonomic and peripheral nervous systems), with variable involvement of cardiac and skeletal muscle. There is also involvement of the liver, and of the lymphoid and endocrine organs. In CFS, the focus is on "fatigue", whereas in ME the focus is on post-exertional fatiguability. Whereas the 1988 Holmes / CDC definition placed great emphasis on symptoms such as mild fever, sore throat and tender lymph glands (ie. glandular fever), the definition criteria of true ME include the following: muscle fatiguability following minimal exertion, with prolonged recovery time evidence of neurological disturbances (CNS + ANS + PNS) evidence of impaired circulation a marked variability of symptoms (from day to day and even from hour to hour) an extended relapsing course, with a tendency to chronicity an increasing sensitivity to drugs (at the Dublin International Meeting on CFS presented under the auspices of The World Federation of Neurology,18-20 May 1994, Professor Charles Poser of the Department of Neurology, Harvard Medical School, and the Neurological Unit, Beth Israel Hospital, Boston, Mass., said this is virtually pathognomonic of true ME). Additionally, in The International Classification of Diseases, the World Health Organisation officially classifies ME as a neurological disorder (ref. G.93.3) whereas it officially classifies fatigue syndromes as "other neurotic disorders (ref: 48.0). It is therefore not an option for Wessely et al to seek to overturn such official classification. Much of the work on the broadly-defined CFS has failed to find the type of abnormalities found in the more strictly-defined ME; this ought not to be surprising, given that the CFS criteria definition specifically does not require evidence of central nervous system dysfunction. For those who look and who wish to see, there are clearly discernible differences between "CFS" and ME, most notably in the pattern of cognitive impairment; in the type and pattern of immune dysfunction; in the clinically unmissable circulatory impairment and in the endocrine abnormalities --- for example, in CFS there is usually a normal to low level of cortisol (Demitrack et al, 1991: Evidence for impaired activation of the hypothalamic-pituitary-adrenal axis in patients with chronic fatigue syndrome. J Clin Endocrinol Metab.1991:73:1224-1234 ) whereas in ME, researchers report cortisol levels which are normal to high (Hilgers & Frank, 1992: Chronic fatigue immune dysfunction syndrome in 103 patients – diagnosis, test results and therapy. Zeitschrift fur Klinische Medizin, 1992:47:4:152-166: In German); Richardson 1995: (Disturbance of hypothalamic function and evidence for persistent enteroviral infection in patients with chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome 1995:1:2:59-66).Indeed, Wessely himself also found mean salivary cortisol concentration to be significantly higher in patients than in controls, concluding that: "These findings are at variance with earlier reports that CFS is a hypocortisolaemic state and suggest that in CFS the symptom of fatigue is not caused by hypocortisolaemia". (Salivary Cortisol Profiles in Chronic Fatigue Syndrome. Barbara Wood, Simon Wessely et al. Biological Psychiatry: 1998:37:1-4). Wessely states that his patients in this study fulfilled both the UK and CDC criteria for CFS and that they had no history of neurological, cardiovascular or endocrine disease, so one wonders about the definition of his cohort. Black puts forward the observation that the immune system is turned on (or more appropriately, is not turned off) because of a hypothalamic defect in the synthesis and / or secretion of CRF. CFR mediates the central nervous system response to environmental, physiologic or psychological stress, thus an on-going immune response results in elevated levels of corticosteroids, catecholamines and certain endogenous opiates. (cf pp. 237-238 above). clarification,the following suggested additional reading has been listed in various categories.
A. DEFINITIONS of ME
2) Ramsay, A.M, O’Sullivan E. Encephalomyelitis simulating poliomyelitis. Lancet: 1956:1:761-766 3) A.Melvin Ramsay. Myalgic Encephalomyelitis and Postviral Fatigue States. 2nd edition. Gower Medical Publishing, London 1988 (1st edition 1986 entitled Postviral Fatigue Syndrome -- The Saga of Royal Free Disease. Ramsay always said how much he regretted not standing firm about the title of the 1st edition, which he wished to call "Myalgic Encephalomyelitis", not "Postviral Fatigue Syndrome": in the 2nd edition, he stood firm). 4) Dowsett EG, Ramsay AM. Myalgic encephalomyelitis – a persistent viral infection? Postgraduate Medical Journal: 1990:66:526-530 5) Hyde, BM. The Definitions of ME / CFS. In: The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Ed: Hyde, BM, Goldstein J. & Levine P. Pub: The Nightingale Research Foundation, Ottawa, Canada, 1992 6) Dowsett EG & Welsby PD. Conversation Piece. Postgraduate Medical Journal: 1992:68:63-65
The presence of enteroviral particles has been found in a significant number of muscle biopsies taken from ME patients. This was rare in healthy controls. Enteroviral sequences have been detected in tissue samples taken from the hypothalamus and brain stem of a patient with ME. Such sequences were not found in samples from depressed patients who had not suffered from ME.
3) Bowles NE, Lane RJM, Cunningham L & Archard LC. Persistence of enterovirus RNA in muscle biopsy samples suggests that some cases of chronic fatigue syndrome result from a previous,inflammatory viral myopathy. Journal of Medicine:1993:24:145-160
In a study of a fairly homogeneous population, 80% of the biopsies showed evidence of structural damage to the mitochondria. A deficiency in the levels of carnitine and serum acylcarnitine have been found; researchers believe this may be involved in the muscular symptoms of ME. Abnormalities in muscle function have been found and do not appear to be related to inactivity. In people with ME, objective tests have found prolonged recovery rates following exercise.
Many studies have found evidence of an overactive (up-regulated) immune system. The immunological changes documented in ME and in strictly-defined CFS are related to the severity of the illness and correlate with intensity of symptom expression. These immune changes are generally more common in the severely affected. The immunological changes are not the same as those documented in depression. Some symptoms of ME may be related to an inflammatory process: findings are consistent with the view that fatigue in ME could be due to cytokine production within the central nervous system.
2) Ho-Yen DO, Billington RW & Urquhart J. Natural killer cells and the post-viral fatigue syndrome. Scandinavian Journal of Infectious Diseases: 1991: 23:711-716
4) Lloyd A, Hickie I et al. Cell mediated immunity in patients with chronic fatigue syndrome, healthy control subjects and patients with depression. Clinical & Experimental Immunology: 1992:87:76-79
mediator receptors in a subset of patients with chronic fatigue syndrome: cross-sectional categorization of patients by immune status. Journal of Chronic Fatigue Syndrome: 1995:1:1:81-96
fatigue in C57/BL/6 versus Balb/c mice. Clinical Immunology and Immuno- pathology: 1996:81:2:161-167
transforming growth factor-ß in serum from patients with chronic fatigue syndrome. Journal of Clinical Immunology: 1997:17:2:160-166
agonist, and soluble interleukin-1 receptor type II secretion in chronic fatigue syndrome. Journal of Clinical Immunology: 1997:17:3:253-261fatigue syndrome: correlation of immunologic parameters to health dysfunction. Clinical Immunology and Immunopathology: 1998:87:1:60-67
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EVIDENCE OF HPA DYSFUNCTION Research has revealed a number of disturbances in the function of the hypothalamic-pituitary-adrenal axis. Some of these are different from the abnormalities documented in patients suffering from depression – indeed, some are the exact opposite. Symptoms indicative of autonomic nervous system dysfunction are not related to psychiatric disorder. Such symptoms cannot be explained by "de-conditioning".
British Medical Bulletin: 1991:47:4:793-808
pituitary-adrenal axis in patients with chronic fatigue syndrome. Journal of Clinical Endocrinology and Metabolism: 1991:73:1224-1234 hydroxytryptamine receptors in patients with postviral fatigue syndrome. BMJ:1992:304:1010-1012 repsonses in depression and chronic fatigue syndrome. Journal of Affective Disorders: 1995:35:283-289 growth hormone release in chronic fatigue syndrome: evidence for glucocorticoid receptor resistance and lack of plasticity? Journal of the Irish Colleges of Physicians and Surgeons: 1995:24:1:20-24 persistent enteroviral infection in patients with chronic fatigue syndrome Journal of Chronic Fatigue Syndrome: 1995:1:2:59-66 autonomic nervous system? American Journal of Medicine;1997:102:4:357-364
F. EVIDENCE OF HYPOPERFUSION IN BRAINSTEM MRI scans have revealed abnormalities in up to 80% of patients. Researchers believe that these defects are probably caused by viral encephalitis. There is a correlation between the areas involved and the symptoms experienced. The number of defects are correlated with clinical status. Abnormalities on SPECT scans provide further objective evidence of central nervous system dysfunction. Studies published to date show patterns of reduced blood flow which are markedly different from those documented in depression. The results on SPECT have been replicated using PET.
Neuropsychological tests on patients with ME / PVFS and strictly-defined CFS have revealed abnormalities which are consistent with organic brain disorder. These deficits have been found in both community and hospital samples. The deficits were not the result of psychiatric disorders, such as depression. Exercise has an adverse effect on cognitive functioning in ME / CFS.
Nevada. Rev Inf Dis:1991:13: Suppl.1: S39-S44
in myalgic encephalomyelitis: a preliminary report. British Journal of ClinicalPsychology:1992:31:111-120 Human Performance. Vol 2. pp.261-278. Ed: AP Smith and D.Jones. London, Academic Press, 1992 fatigue syndrome. Biological Psychiatry:1996:40:535-541
JNNP:1997:62:151-155 exercise on cognitive functioning in chronic fatigue syndrome. American Journal of Medicine:1998:105:3A:59s-65s encephalomyelitis to Alzheimer’s Disease. Proceedings of the BritishPsychological Society, 1999, 12 January
It should be noted that there is no evidence of maladaptive beliefs, nor of phobic avoidance of activity in patients with ME. In contrast to claims made by the "Wessely School", other more rigorously controlled studies have found low rates of depression. The depression experienced by patients with ME / strictly-defined CFS is different from that found in psychiatric patients and is closely related to the severity of other symptoms. The fatigue is not due to a lack of motivation or effort. Evidence indicates that most patients with ME / CFS do not spend the whole day resting, and that a number of coping strategies are used. Longitudinal studies using appropriate measures have shown that patients’ attributions to a physical cause do not affect outcome; moreover, research on patients with ME indicate that a belief in a biological cause is not associated with poor mental health. Graded exercise (where activity is increased according to a pre-set plan irrespective of symptom severity) is not appropriate for all patients with ME / CFS: over-exertion can lead to relapse. There has been no study assessing the effectiveness of graded exercise or cognitive behavioural therapy in ME or in strictly-defined CFS. The documented links between CFS and psychiatric disorders may reflect the overly-broad diagnostic criteria and the researchers’ choice of measures for assessing psychiatric morbidity.
fatigue syndrome. British Journal of Psychiatry:1990:156:534-540Lancet:1991:337:992 syndrome (myalgic encephalomyelitis). Journal of Infection:1991:23:263-269266
clinical condition associated with immune activation. Lancet:1991:338:707-712 twitch properties and perceived effort in normal subjects and patients with chronic fatigue syndrome. Brain:1991:114:85-98for chronic fatigue syndrome and primary depression. Clinical InfectiousDiseases: 1994:18: (Suppl 1) S105-S110 American Psychologist:1997:52:9:973-983 fatigue. Psychological Medicine: 1997:27:343-353chronic fatigue syndrome: a one-year follow-up. Journal of PsychosomaticResearch:1997:43:4:405-415 syndrome. The Occupational Therapy Journal of Research:1997:17:3:186-199 fatigue – the psychiatric characteristics of the sufferers of Iceland Disease. Acta Neurologica Scandinavica:1997:96:3:158-162 Medicine:1997:103:83-84 women with chronic fatigue syndrome. QJM:1998:91:7:465-473syndrome: importance of illness cognitions. Journal of Psychosomatic267 Research:1998:45:1:77-83 among women in primary care. General Hospital Psychiatry:1998:20:5:307-316 ways of coping. British Journal of Health Psychology:1998:3:111-121.
Note: In her paper in ME Today (BRAME) 1999:9: pp 27-31 entitled Research into ME / CFS 1988-1998: Too much philosophy and too little basic science, Dr E.G.Dowsett (former President of the UK ME Association) states: "Owing to severe problems in obtaining any adequate funding and in securing subsequent publication for ME research outside the psychiatric remit in the UK, most basic scientific work is performed with difficulty and published abroad". Dowsett observes: "Previously reputable medical journals concur with therapies which compound psychological manipulation. A leading proponent of this approach has ensured that the very words of a leading article on this subject are now inscribed upon a wide variety of benefit agency, insurance, retirement and other official forms which doctors must sign on behalf of their patients. "Compared with this bludgeoning of public opinion, the ‘mass hysteria’ allegation at the Royal Free Hospital seems little more than the mad buzzing of a demented fly". One must never forget that the recipients of this aptly-described bludgeoning are many extremely sick and disabled human beings. It is worth recalling that in his address to the 1999 Sydney, Australia ME / CFS Conference, Simon Molesworth QC pointed out that "Litigation for misdiagnosis is a reality", and he asserted that doctors are legally vulnerable if they dismiss CFS as somatisation disorder or as another manifestation of psychopathology. It is hoped that if used as a compendium, the two volumes of Denigration by Design? will help to establish the prominent role played by Simon Charles Wessely in the dismissing of ME /CFS and related syndromes as somatisation, despite the enormous body of published research which indicates that such a view is inappropriate, unproven and harmful.
Notes on Human Herpes Virus Type 6 Research in ME
8 Variant A is less common. In 1986 Ablashi was contacted by three of the eading US experts in ME / CFIDS / CFS (Drs Cheney,Peterson and Komaroff) and asked to test for HHV6 in ME / CFIDS. He found that 70% of those patients had variant A instead of variant B. 9 Ablashi is now working with Professor Robert Suhadolnik (see pp.12 & 243 above), as HHV6 is directly related to the low molecular weight protein which Suhadolnik hopes will become a marker for ME / CFIDS / CFS.
Information about other virological aspects of ME / CFS supplied by The Chronic Fatigue Syndrome Research Foundation (formerly known as The Persistent Virus Disease Foundation) Chairman Professor John Hughes FRS stated that CFS / ME is a biochemical condition; the Foundation believes that it is now recognised as a serious organic illness. According to Hughes, "Progress requires the close collaboration of neurologists, geneteticists, molecular biologists and neurobiologists…..the technology is now available to measure gene transcription (phenotype) in a single nerve cell". From their press release, just two examples of on-going studies funded by the CFSRF include the following: 1. Alteration of gene expression in CFS (Dr Robert Powell from The University of Reading, with Professor Stephen Holgate, MRC Clinical Professor of Immuno-pharmacology, University of Southampton. Most diseases involve increases or decreases in the activity of specific genes. In some cases this may be found in the genes of the infectious agent but in many cases it is the genes of the affected individual which are altered. More specifically, it is the genes involved in the immune system (the body’s defence mechanism) that show such changes. In CFS, the likely sites of these alterations are the lymphocytes. These researchers believe it is likely that a number of infectious agents and / or toxic substances could be responsible in different individuals; assuming there is a common underlying mechanism as a result of these different assaults, a unifying disease process can be envisaged at the cellular level. Extracts of genetic material are isolated, processed and examined by differential display: effectively this allows the identification of genes that are more or less active in one group of individuals than another. Such altered gene expression could provide a consistent pattern of changes in CFS patients which could distinguish them from those not suffering from CFS.
Carter and his team have been examining how a persistent virus infection could affect the functioning of the cell. Their most recent work has focused on the effect of poliovirus, a member of the enterovirus family, on the energy-producing compartment of cells. Since many viruses could have a similar effect, this mechanism could offer a unifying explanation for CFS / ME. Carter’s team went on to determine at which stage of energy production the mitochondria were affected by poliovirus infection. It is known that energy is released by a flow of electrons, so it is possible to find out at which step any blockage is occurring. Carter has found that the effect of viral infection is blocking energy production mainly at ( or just past) the second stage, i.e. blocking the transport of electrons to the third stage. Using special dyes, it was shown that mitochrondrial function is dramatically altered by poliovirus infection. These changes in cellular energy levels as a result of impairment of mitochondrial function could well explain the muscle fatiguability in ME / CFS, as it is possible that a variety of different viruses may be acting through similar mechanisms.
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