Concerns of Report

Denigration By Design

Summary of Concerns of Joint Royal College Report

What is particularly objected to about the joint Report is the relentless assertion that the more severe subgroup (ie. those with "true" ME as distinct from CFS) does not exist as a disease entity, and that antidepressant therapy, together with CBT, is an effective measure which should be used to modulate sufferers' maladaptive "perception" of their suffering.

Since 1987, the onslaught has been unremitting from this group of psychiatrists, so no matter how disingenuously they use their Report to promote the view that psychiatric illness is just as legitimate as "organic" illness, people are not deceived, because the published evidence of what they really believe is there for all to see. (see p224 below / Appendix I: The Views of Dr Simon Wessely on ME: Scientific Misconduct in the Selection and Presentation of Available Evidence? E. Marshall & M. Williams. CFIDS Chronicle, Spring 1994:14-18).

These same doctors have assiduously and relentlessly denigrated patients who are desperately sick with this syndrome, some of whom are so incapacitated that they have to be fed via a nasogastric tube. Many cannot look after themselves and require 24 hour care.

Despite their lip-service about the need for strict operational case definitions, these authors do not heed their own advice in that they do not study those who are the most severely affected, preferring instead to study patient cohorts who will not disrupt their own analyses.

It is no wonder that some psychiatrists are despised and held in contempt, when they refuse to accept that a conviction of physical disease in ME I CFS may not be dysfunctional thinking or psychosocial denial, but may arise from severe physical symptoms which are indeed organic in origin.

Doctors who have set views regardless of the facts might themselves qualify as dysfunctional thinkers, the effect of which is their determination to psychologise illnesses which they do not understand.

ME sufferers' iatrogenic distress will end only when truth becomes as important as power and politics, and when inaccurate labelling no longer serves as a cloak for ignorance, prejudice and misguided beliefs.

The promotion of bad science is unacceptable and for the members of the joint Royal Colleges' working group to have presented only their own selective and biased choice of references from the enormous body of available medical literature can hardly be anything other than bad science.

The joint Report is thus not a scientific re-appraisal at all.

Many of their own studies on which the authors of CR54 relied have been shown to contain major methodological flaws, whilst studies which do not bear out the psychiatrists' views are ignored, dismissed, or misleadingly quoted (Response of the ME / CFS Charities Alliance, page 7: sent to the CMO on 31st January 1997).

For example, whilst a paper by Buchwald, Gallo and Komaroff is mentioned (reference 128 in the joint Report), the authors of the joint report dismiss it (on page 16), stating "White matter abnormalities occur in a number of settings, and their significance remains to be determined", whereas the paper itself concludes that patients with CFS "may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system" and that the MRI scans revealed punctate, subcortical areas of high signal intensity consistent with oedema or demyelination in 78% of cases.

This is a clear illustration of the biased and misleading personal interpretation presented by the joint Royal Colleges' working group.

A paper by Bombadier & Buchwald is listed (reference 173 in CR54), but again, the authors of the joint Report convey that this paper supports their own stance, whereas the paper itself actually states "The fact that the same prognostic indicators were not valid for the group with CFS challenges the assumptlon that previous outcome research on chronic fatique is generalizable to patients with...chronic fatigue syndrome" (which is exactly what Anthony David and Simon Wessely of the joint report frequently do).

Again, at paragraph 7.21, a paper by Curt Sandman is listed (reference 153 in CR54) in apparent support of the joint report's claim that the results of neuropsychological testing have been "inconsistent'; this is another illustration of deliberate mis-information being propagated by the joint report authors, because the paper itself clearly concludes "The performance of the CFIDS patients was sevenfold worse that either the control or the depressed group.. .These results Indicated the memorv deficit in CFIDS was more severe than assumed by CDC criteria.. .a pattern emerged of brain behaviour relationships supporting neurological compromise in CFIDS".

One would never know this from the way the authors of the joint Royal Colleges' report downplay this important research.

Yet again, there seems to be a quite deliberate intention to mis-inform: a very important illustration of this can be found in the fact that the joint report authors entirely fail to mention that, as mentioned above, the lCD 10 formally classifies ME under "Diseases of the Nervous System"; instead, the joint report authors chose to emphasise at paragraph 3.2 that "The World Health Organisation International Classification of Diseases (lCD-10) category of neurasthenia also has considerable overlap with CFS". This is particularly misleading in that the lCD 10 category which contains "neurasthenia" comes at Section F 48.9, which is Mental and Behavioural I Neurotic Disorders.

For the avoidance of doubt, the advice of WHO is unequivocal: ME must be in Section G 93.3 (Diseases of the Nervous System), whereas neurasthenia I fatigue syndromes must be in Section F 48.

Again, one would never know this from the authors of the joint report, as they have been so wilfully misleading. One can safely say "wilfully", as there is published evidence which confirms the authors' full awareness of the separate classifications (Chronic fatigue, ME and lCD 10. David A, Wessely S. Lancet 1993:342:1247-1248);

It is inconceivable that the authors of the joint report are unaware that the earliest definitions of ME I CFS were concise and descriptive and were based on a good history and on good patient observation: Wallis (1955) provided a concise list of symptoms (with appropriate variations in children and adolescents) whilst Ramsay (1956) introduced the descriptive name "myalgic encephalomyelitis" which has stood the test of time for over 40 years in the UK, Australasia, Canada and elsewhere. ( An investigation into an unusual disease in epidemic and sporadic form in general practice in Cumberland in 1955 and subsequent years. Wallis AL. University of Edinburgh. Doctoral Thesis, 1957; Encephalomyelitis simulating poliomyelitis. Ramsay AM, O'Sullivan E. Lancet 1956:1:761-766). Moreover, it is acknowledged that ME I CFS has a unique neuroendocrinological profile, and that molecular biology provides documentation of associated viral infection, and that radiobiology points to specific anatomical areas of brain damage. (Does "Chronic fatigue" adequately describe myalgic encephalomyelitis? E. G.Dowsett, December 1997)

It is surely a matter of acute dismay that a substantial report, purporting to emanate from three prestigious Royal Medical Colleges of the United Kingdom, has been allowed to bring such opprobrium on the Academy of Medical Royal Colleges.

In issue number 9033 dated 12th October 1996, The Lancet ran an editorial entitled "Frustrating survey of chronic fatigue", which stated

"The sixteen - strong committee was top heavy with psychiatric experts, so the emphasis on psychological causes and management (introduction of graded exercise and cognitive behaviour therapy) is no surprise.

"Charles Shepherd, medical director for the ME Association, told us that 'the Committee was rigged, with dissenting voices excluded'.

"Certainly, the expert committee describes no attempt to collect external opinions, and the report is little more than a literature survey.

"Psychiatry has won the day for now. A decade hence, when an organic cause for at least some cases of CFS may have emerged, it would be tempting to ask the committee to reconvene.

"We believe that the report was haphazardly set up, biased, and inconclusive, and is of little help to patients or their physicians".

Some weeks later, the Editor of The Lancet, Richard Horton, wrote a telling piece about the Royal Colleges' joint report in Observer Life on 23rd March 1997, in which he noted:

"The college representatives interpreted every piece of evidence pointing to a biological cause -for instance, a virus - in a negative light.

"Indeed, the evidence shows a total failure of antidepressants in these patients.

"Surprisingly, though, the Royal Colleges endorse the use of antidepressants.

"Intelligent discussion is seen as an attack on the physician. And any success for complementary therapies is attributed to the 'charisma of the practitioner'.

"Medical paternalism seems alive and well in Britain today.

"... the larger lesson - namely, that doctors should listen more and pronounce less - has been missed.

"It is interesting to note that the last word in an American review on chronic fatigue is 'compassion'. One struggles to find this word in the UK report".

It is perhaps worth considering the American report to which the Editor of The Lancet refers. It is entitled Chronic Fatigue Syndrome: Information for Physicians and was produced by the National Institutes of Health (National Institute of Allergy and Infectious Diseases), Public Health Service, US Department of Health and Human Services in September 1996, barely one month before the publication of the UK joint Royal Colleges' report.

The American report is very different from the UK joint Royal Colleges' report. On page 3, it states "It is important to note that about 20-40% of carefully evaluated CFS patients do not have depression or another psychiatric illness", which is substantially different from the UK report, which claims that 75% of all CFS patients have a psychiatric illness.

On page 3, the American report advises that "Some studies have found a significantly greater prevalence of allergy in CFS patients. . .. many CFS patients have a history of allergies years before the onset of the syndrome.

"Sometimes patients report a worsening of allergic symptoms or the onset of new allergies after becoming ill with CFS", whilst on page 9 it refers to "the high prevalence of allergies in the CFS population". The UK report, in comparison, states "Patients with long histories of . . . food allergies (and) chemical sensitivities... may fulfil established criteria for somatisation disorder (page 16: 7.11). Also, the UK report refers to "food allergy" in inverted commas (page 3:2.7), thereby conferring the authors' non-acceptance of food allergy.

The American report states on page 6 "Patients with CFS should be treated with "compassion". In the UK, "compassion" involves the withdrawal of state benefits on the advice of Wessely that people with ME only have a belief that they are ill.

On page 7, the American report states that "a reasonable laboratory workup" should be performed in cases of CFS, whilst the UK report categorically states "No investigations should be performed to confirm the diagnosis" (page 45).

In discussing children with CFS, the American report states on page 7 that it advocates a "supportive approach", whereas the UK report states that children may need to be forcibly removed from their home and parents.

On page 8, the American report further states "the physician should work with the school to limit class time, if necessary, and to resume school attendance gradually", but the UK report urges "an immediate return to school" (page 31: 10.12).

The American report states "Home tuition may be an alternative", but the UK report asserts "We discourage home tuition" (page 31: 10.12).

The American report recognises (on page 8) and accepts that "Some patients benefit from participation in CFS support groups", but the UK report authors are well known for their view that membership of such support groups is unhelpful (Outcome in the chronic fatigue syndrome. Simon Wessely. BMJ 1992:365).

The American report states on page 8 "Referrals to professionals who can help patients with practical matters, such as applying for disability and obtaining home health care.. .can help.. .patients and their families better manage this illness"; the UK report instead advocates that the best way to manage this illness is to alter the patient's (and the family's) view about the illness, and in particular, to brain wash them into accepting that the illness is merely "a belief" that they are ill.

The American report states on page 9 "CFS patients often report that antidepressants given in full therapeutic dose exacerbates their fatigue. . .Many CFS patients are extremely sensitive to these drugs", but the UK report unambiguously and vigorously urges the use of "antidepressants for CFS sufferers, (even those) without symptoms of depression" (page 45).

The American report states on page 10 "A variety of common viruses can be re-activated in some CFS patients&ldots; most investigators believe virus reactivation could be occurring secondarily to some immunologic disturbance", but the UK report states "Some use the results of immunological tests as evidence for a so-called 'organic' component in CFS... such abnormalities should not deflect the physician from the biopsychosocial approach.., and should not focus attention ...towards a search for an 'organic' cause" (page 13: 6.4).

The American report states on page 11 that, if confirmed, central nervous system research would support the theory that "CFS is a multisystem illness with prominent central nervous system involvement", but the UK report concludes that "chronicity is likely to be associated with... unaddressed psychosocial issues" (page 21: 8.17), and states "Many of the current findings may be epiphenomena relating to ... psychological distress...or... inactivity". (page 37:13.7).

The above illustrations are just some examples of the difference in approach to the understanding of ME / CFS by American physicians and UK phsychiatrists.

When an American medical scientist (Dr Terry Hedrick) sent a careful critique of the Royal Colleges' report (The Royal Colleges' Report on Chronic Fatigue Syndrome: Insidiously Biased and Potentially Harmful: CF!DS Chronicle: Winter 1997(ie.January 1997):Vol. 10:1:8-13) to the President of The Royal College of Psychiatrists (Dr R.E.Kendell), in his defence of Wessely, he responded not to the legitimate criticisms, but instead chose to denigrate Dr Hedrick's professional standing, writing to her on 5th March 1997 as follows:

"I do not think it is particularly surprising that you and British doctors generally should take so different a view of the report of the Working Party set up by our Colleges of Physicians, General Practitioners and Psychiatrists. The members of that working party were carefully picked by the three colleges for their extensive experience of treating patients suffering from the chronic fatigue syndrome and for their personal contributions to the literature on the subject. The report, in other words, was written by doctors and primarily for doctors. Your background, as I understand it, is not in either treatment or medical research, but in the evaluation of review articles.

"You may be interested, therefore, to read the report... produced ... by the National Institute of Allergy and Infectious Diseases at NIH.

"The conclusions of that report are virtually identical to those of our report...".

(see pp 63-65 above for evidence that the two reports are far from "identical").

In her reply to Kendall, Dr Hedrick wrote:

"I am disappointed that you chose only to question my professional qualifications and do not deal with the substance of my concern.

"Although you stated that the Royal Colleges' report was written by doctors for doctors, I do not believe it is necessary to be a physician in order to have legitimate criticisms of this report. In fact, the time is long past when one should expect to write reports on controversial illnesses and confine the readership only to physicians. Multi-disciplinary perspectives always enrich the research process.

"In my last position I was a member of the US government's Senior Executive Service, with the title of Assistant Comptroller General for Program Evaluation, heading a technical division of 70 MA and PhD interdisciplinary researchers&ldots; on.. medical topics.

"Researchers in this division frequently worked closely with physicians... we also worked with biologists, lawyers, economists, educators, welfare researchers, statisticians, evaluation specialists, information technologists, biotechnologists etc.

"I view interdisciplinary collaboration as desirable rather than as something to be avoided.

"The fact that I have an MA in clinical psychology with a PhD in social psychology and postdoctoral specialization in research methodology probably provides me with more background in mental health measurement issues than is typically provided in the usual psychiatrist's educational programme.

"I have tutored medical students.

"I am a member of the American Psychological Association, the American Evaluation Association (twice elected to the board), the American Statistical Association, the American Association for the Advancement of Science, Sigma Xi (a scientific honorary) and Phi Beta Kappa; I have served on journal editorial boards... I have published journal articles and a 1993 textbook on applied research design for MA level students that is now in its 5th printing.

"Your letter characterizes me as someone who only reviews other peoples' articles and research. Let me correct this impression. While I did not chose to do clinical work after receiving my degrees, I have personally conducted research studies in university, private and governmental settings.

"Your letter implied that British doctors generally support the Royal Colleges' report, yet I have learned that there are a number of on-going disputes regarding the report's . .abrupt dismissal of the more physiologically-oriented CFS research.

"I also understand that at least a couple of US officials who were asked to review the draft report cautioned of the danger of relying so heavily on a single individual's work.

"Let me correct your misunderstanding of my concerns about the report. The psychiatric literature summarized was not representative of the full spectrum of credible research.

"The working group, by allowing this one viewpoint to dominate, violated basic scientific norms essential to doing objective work.

"To have one working group member's research constitute 10 percent of the references is a red flag for bias.

"Please be open to criticisms from persons who share a goal of fostering a better understanding of CFS.

"I remain willing to talk with whomever might be interested and look forward to any opportunity provided".

The uncritical support provided by the President of the Royal College of Psychiatrists for Wessely and the joint report does not stand up to scrutiny.

At the press release to launch the joint Royal Colleges' report, Dr Robert Kendell, as President of the Royal College of Psychiatrists, was quoted as saying "To try to distinguish between a physical illness and a psychological illness is not just wrong, it's meaningless" (Press Launch, Royal College of Physicians, London, 2nd October 1996); this fallacy was encapsulated in a letter to the Guardian newspaper which said "Try telling that to someone with terminal cancer" (Letter: H.J.H.Berger, Guardian, 5th October 1996, page 16).

Like Wessely, Kendell seems to have become confused: he seems not to recall that when he was a senior registrar, he published a paper entitled "The Psychiatric Sequelae of Benign Myalgic Encephalomyelitis" (R. E. Kendell. Br. J Psychiat 1967:113:833-840) in which he concluded:

"The psychiatric disturbances occurring during the acute phase.. of ME were so widespread and so similar. . .that the presence of a specific underlying disturbance of cerebral function can hardly be doubted".