JRC Report

Denigration By Design

Joint Royal Colleges Report on CFS / ME (CR54)

Chronic fatigue, chronic fatigue syndrome, and fibromyalgia Wessely S. and Sharpe M.In: Mayou R, Bass C and Sharpe M (eds) Treatment of Functional Somatic Symptoms (Chapter 16): Oxford University Press 1995: 285-312 (Reviewed in 1996).

A summary of the authors' personal view of these conditions, supported by their own selection of the available literature describing patients' attitude to their illness and discussing factors which the authors believe might be helpful to recovery.

The authors state "Patient organisations now supply sufferers with digests of professional journals. Such information may have a considerable and often unhelpful influence on patient attibutions of illness, which ... .can be a major determinant of a patient's willingness to accept psychological treatment" (page 299).

Chronic fatigue syndrome: an adult perspective Wessely S. Association for Child Psychology and Psychiatry 1996:12:37-54

A review focusing in particular on evidence that CFS is a neurobiological disorder, and focusing on the author's belief that the perpetuation of the illness is associated with psychological factors such as maladaptive attitudes. (The following section deals with the Joint Royal Colleges' Report on CFS: the chronological review resumes on page 77)

Chronic Fatigue Syndrome: report of a loint working group of the Royal Colleges of Physicians,Psychiatrists and General Practitioners, October 1996 / CR54

Ostensibly claimed to have been prepared at the request of the UK Chief Medical Officer (and therefore was commissioned by the CMO) as a response to the 1994 Report of the UK National Task Force on CFS / ME, and that it was the Presidents of the three Royal Colleges who nominated the expert committee, this report constituted a landmark in that, unlike most such reports, it received massive public exposure, and it was widely believed (and conceded by some) that Wessely himself was the instigator and prime mover.

In his CMO's Update 13 (February 1997), which is a communication from the Chief Medical Officer to all UK doctors, the CMO (then Sir Kenneth Calman) specifically endorsed CR54 by drawing its findings to the particular attention of all doctors in the UK. Had he not endorsed those findings and conclusions, the CMO could have chosen not to promote CR54 in his Update 13.

Somewhat surprisingly, in a letter dated 22nd December 1997 to The Countess of Mar, the Minister of State for Health ( Baroness Jay of Paddington) implied that the Department of Health claimed total dissociation from CR54, which may possibly have had something to do with the volume and quality of the scientific evidence which by then had been sent to the CMO, showing how biased CR54 was. One immediate criticism was the fact that 10% of the Report's 256 references were authored by just one member of the Working Group - Simon Wessely. Also, nine of those references had not even been published or peer reviewed.

Certainly Wessely was an adviser to the UK Government Department of Social Security, and what is also certain is Wessely' close relationship with virtually all the other members of this "expert committee".

Indeed, out of the 15 medical members, eight (53%) are psychiatrists well known for their published views which deny the reality of ME (as distinct from CFS, which they claim as a psychiatric disorder).

What is also certain is that six of these members were also signatories to the much-criticised Oxford consensus criteria on CFS in 1991.

Expert committees are usually held to be just that; complete impartiality is required as de rigueur: in this case, even the most cursory appraisal reveals that this "expert working group" might not be quite as impartial as is usual.

Of the psychiatrists involved, Dr Anthony David believes: "A diagnosis of depressive illness would be appropriate. Unfortunately this is not good enough for the patient". (Postviral fatigue syndrome and psychiatry. A. S.David. BMJ 1991:47:4:966-988)

"Doctor behaviour, such as sick certification, emerged as a significant contributor to the risk of chronic fatigue". (Predictors of chronic "postviral" fatigue. Helen Cope, Anthony David, Anthony Pelosi, Anthony Mann. Lancet 1994:344:864-868).

Dr Sean Lynch believes: "The original criteria for the chronic fatigue syndrome would exclude patients with any concurrent psychiatric symptoms... .as few patients would then meet this definition... .these criteria are widened to include psychiatric morbidity.

"There is no evidence to date of a higher than normal risk of adverse drug reactions in this group of patients". (Antidepressant therapy in the chronic fatigue syndrome. Sean Lynch, Ram Seth, Stuart Montgomery. British Journal of General Practice 1991:41:339-342).

Dr Anthony Pelosi believes:"The closer cases fulfil the definition of chronic fatigue syndrome, the closer the association with emotional morbidity.

"The only significant prognostic predictors... .were a primary psychiatric diagnosis... .and a strong conviction that the illness represented a physical disease.

"Recovery from syndromes of chronic fatigue has now been shown to be independent of virology and immunological measures, and a poor outcome to be related to psychological morbitidy". (Chronic fatigue syndrome: prevalence and outcome. Psychological factors are important for management. SM Lawrie, AJ Pelosi. BMJ 1994:308:732-733)

The myalgic encephalomyelitis societies should not try to set the research agenda or shout down views with which they disagree". (Chronic fatigue syndrome and myalgic encephalomyelitis. SM Lawrie, AJ Pelosi. BMJ 1994:309:275).

Dr Simon Wesselv is well known for his much-published belief that: "Perpetuating factors include ... . illness beliefs and fears about symptoms, symptom focusing, and emotional states.

"There lies at the heart of CFS not a virus (or) immune disorder, but a distortion of the doctor-patient relationship". (Chronic fatigue syndrome: an update. Anthony J Cleare, Simon C Wessely. Update 1996:61-69).

Dr Peter White believes: "Psychiatric diagnoses were particularly associated with a duration of symptoms longer than four months.

"The commonest diagnosis . . . was major depressive disorder in half the patients with a further 15% having a somatisation disorder"

"If symptoms persist... psychiatric disorders will be found in two-thirds of patients". (Fatigue syndromes: neurasthenia revived - psychiatric illnesses are worth considering. Peter White. BMJ 1989:298:1199-1200).

Of the non-psychiatrists on this working group, Sir Richard Baylis believes: "Many of the symptoms in the chronic fatigue syndrome are identical to those seen in psychiatric disease, notably a depressive illness. "Furthermore, many patients with the chronic fatigue syndrome improve in response to anti-depressive pharmacological therapy... .about 70% of those treated in this way return to work with a good quality of life". (Medico-legal Report prepared for a High Court action in The Royal Courts of Justice, London. R.I.S.Bayliss. 8" July 1991. Bayliss is late physician to HM The Queen and to the Royal Household).

Professor Richard Edwards believes: "Many of the . . . symptoms of these patients could be a consequence of reduced habitual activities.

The dizziness and disturbances. .of vision, and the gastro-intestinal problems experienced by patients after relatively mild exercise&ldots; are also experienced by normal controls". (The metabolic consquences of reducd habitual activities in patients with muscle pain and disease. Anton JM Wagonmakers, John H Coakley, Richard HT Edwards. Ergonomics 1988:31:11:1519-1527).

Dr Tim Peto believes: "Illness beliefs and coping behaviour previously associated with a poor outcome changed more with cognitive behaviour therapy.

"Adding cognitive behaviour therapy to the medical care of patients with the chronic fatigue syndrome is acceptable to patients and leads to a sustained reduction in functional impairment". (Cognitive behaviour therapy for the chronic fatigue syndrome: a randomised controlled trial. Michael Sharpe, Tim Peto et al. BMJ 1996:312:22-26).

Dr Leonie Ridsdale believes: "Doctors may help some patients reattribute symptoms which may prevent unnecessary referrals". (GPs and patients disagree over causes of fatigue. Pulse 24 September 1994: 15).

At least five member of this working group all have connections with Wellcome, the pharmaceutical giant who in 1989 sold Coopers Animal Health, a company it had set up in 1985 in partnership with ICI to produce organophosphates (OPs) (Dirty Medicine. Martin J Walker. Slingshot Publications, London, 1993, p.219).

Perhaps of note is the fact that Peter Behan, formerly Professor of Neurological Sciences at Glasgow, UK, has found farmers who have been exposed to low doses of OPs to have a neurological condition indistinguishable from ME / CFS. (Chronic Fatigue Syndrome as a Delayed Reaction to Low Dose Organophosphate Exposure. Peter 0. Behan. Journal of Nutritional and Environmental Medicine 1996:6:4:341-350).

Is it purely by chance that these particular doctors who are known to have links with Wellcome should be so unrelenting in their efforts to ensure that ME I CFS is nothing more than an aberrant belief held only by suggestible people, and to promulgate the notion that it is only those doctors who have not learnt to deal effectively with suggestible patients who endorse the existence of ME? (Old wine in new bottles: neurasthenia and 'ME'. Simon Wessely. Psychological Medicine 1990:20:35-53).

In a letter dated 14th October 1996 submitted to the BMJ, Dr Charles Shepherd, Medical Director of the UK ME Association, pointed out that many of the disagreements about this Report could have been resolved if the Royal Colleges' working group had agreed to meet with representatives of the National Task Force during the preparation of CR54, but this was not the case: any such collaboration was refused by the members of the CR54 working group, so an opportunity to create a real consensus was lost.

Whilst the Report of the National Task Force concluded that ME is a distinct and particularly severe sub-group of CFS, this Report (CR54) seemed to have as its main agenda a determination to "de-recognise" ME as a nosological entity: indeed, two members of this working group have already tried to get the World Health Organisation neurological classification revoked (Chronic Fatigue, ME, and ICD I0. Anthony David, Simon Wessely, BMJ 1993:343:1247-1248).

To coincide with the publication of CR54, Wessely's like-minded colleague from the USA, Stephen E Straus, Chief of the Laboratory of Clinical Investigation at the NIH, Bethesda, Maryland, (who seemingly can always be relied upon to provide an obligingly supportive stance for Wessely's efforts) wrote in the BMJ about CR54 as follows:

"This week a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners in Britain issued a report on chronic fatigue syndrome. The report constitutes, arguably, the finest contemporary position statement in the field, and physicians and patients are well advised to read it".

From the outset, the working group addressed inappropriate imperatives; some of these are considered below, and in summary are as follows:

(i)the report equates ME with CFS: they may be related syndromes, but they are not the same (lCD 10 classifies ME as a neurological disorder - ref G 93.3, whilst fatigue syndromes are classified as other neurotic disorders - ref F48.O) and the National Task Force report classifies ME as the most severe subgroup of the overall term CFS

(ii)the advice on children with ME / CFS is gravely inappropriate

(iii)there is a total disregard of the available evidence in disciplines other than psychiatry, eg. virology, neuroendocrinology, immunology.

The present author compiled observations on the joint Report and on 17th November 1996 these were sent to the Chief Medical Officer and to the Presidents of the three Royal Colleges; main issues included the following:

Chapter 2 / Background

The joint report states "There is a tendency to over-investigate using laboratory and imaging techniques": the reality is that patients with ME frequently find it impossible to be taken seriously by their doctors, who regularly strike ME patients off their list, treating them with obvious disdain and lack of basic courtesy.

"In clinical practice we have noted that the label of ME has been used by doctors and others for the following situations, emphasising an unacceptable diversity of use: severe, unexplained fatigue and exhaustion". It will be recalled that it was these very psychiatrists who formulated their own "Oxford" criteria, and it is their own criteria which stipulate that all categories of medically unexplained "fatigue" be encompassed in the case definition of CFS, so it was they themselves who advocated such a dilution of critical definitions. It is certain that ME is over-diagnosed, but it is the broadened criteria which have contributed to this over-diagnosis. On page 9 of the joint Report, an incidence of 2.6% of the UK population is claimed, but this is generally believed to be a gross over-estimate, and that the figure for true ME is 0.1 % (ie. one per thousand), which gives a strike rate of 55,000 in the UK. Even if the figure is taken as being 0.2% of the UK population (ie. two per thousand), the figure would then be 110,000 in the UK. This differs from the Report's estimate of more than one million in the UK (of which they claim that 75% have a psychiatric aetiology).

Chapter 3/ Definitions

The problem of definition continues to bedevIl ME /CFS and it is not helped by the reluctance of these psychiatrists to address the urgent need to differentiate the various sub-groups of chronic fatigue syndromes, with the result that patients with distinctive and defined "true" ME have become submerged under the umbrella term of "CFS" (which is bad science, as it ignores the disorders of cholinergic transmission and the damage to the receptor chemistry found in ME, together with the evidence of an up-regulated immune system consistent with an on-going response to viral activity).

It is a matter of concern that the authors of the joint Report seem unaware that in ME, "fatigue" is not the major symptom: the over-riding symptom is incapacitating exhaustion together with post-exertional muscle fatiguability, almost always accompanied by profound malaise and a burning, vice-like pain in the affected muscles (myalgia).

The term "chronic fatigue syndrome", far from being "the most appropriate term for the syndrome", is neither appropriate, accurate, nor descriptive; it excludes core symptoms and is abhorred by patients and physicians alike, who believe it implies a benign state of trivial importance, suggesting that people with CFS lack motivation to get on with life. Little consideration is given by this Report to such commonly found symptoms as ataxia, vertigo, diplopia, rashes, easy bruising, severe and recurrent mouth ulcers, non-androgenous hair loss, pancreatic dysfunction, vascular changes, cardiac problems and autonomic dysfunction resulting in insecure bladder and bowel control.

At paragraph 3.4, the authors state "Patients may wish to keep a particular term (ie. ME) because only with that label are they eligible to call upon the welfare state for help". In the UK, it is the very label "ME" which has stopped patients from getting welfare benefit: even those who on clinical grounds have been awarded such benefits for life have subsequently had those benefits withdrawn on the grounds that "ME is not a pathology in its own right" (Internal Memorandum from Dr A.E.Fumiss, Medical Officer to the Benefits Agency Medical Services, 4" April 1995). Those directives come from BAMS, to whom Wessely is an adviser on ME / CFS (Letter dated 10th January 1997 from Dr Simon Wessely to Dr Mansel Aylward at The Department of Social Security, The Adeiphi, 1,John Adam Street, London WC2 6NT).

Chapter 4/ Epidemiology

Paragraph 4.2 states "At least 25 studies exist concerning the prevalence of chronic fatigue in the community": it is the constant and indiscriminate use of the different terminologies as interchangeable which has contributed to the present obfuscation of case definitions, and this factor is the one which so hinders research (Report from the National Task Force on Chronic Fatigue Syndrome (CFS),Postviral Fatigue Syndrome (PVFS) and Myalgic Encephàlomyelitis (ME). Westcare, Bristol, September 1994).

Chapter 5 / Virology

This chapter on virology in CFS is only 2½ pages in total; it has no less than 12 self-references of the joint report authors (who have long been known for studying "fatigue" as distinct from ME, and then for ascribing their results to all chronic fatigue syndromes, including "pure" ME / CFIDS). The report authors state at paragraph 5.9 that "the risk.. .was increased if there was evidence of . . .psychological morbidity before acquiring an infection" and at paragraph 5.10 the authors state "Another primary care study using very similar patients found that chronic fatigue after clinically defined common viral infection was associated with the patient' somatic attributional style (a person's tendency to see him or herself as suffering from a physical illness) and. . .sick certification"

On 2nd March 1997 an independent ME researcher (D.Jones MSc) sent her own observations on CR54 to the CMO, noting about this chapter that it is beyond comprehension how any professional review panel such as this so-called "expert" working group could have ignored the findings of impaired 2-5A synthetase / RNase L antviral and anti-proliferative pathways (first reported by Suhadolnik at the 1990 First World Symposium on ME / CFS held at the University of Cambridge, UK and subsequently in the medical literature, for example: Changes in the 2-5A Synthetase I RNase L Antivira! Pathway in a Controlled Clinical Trial with Poly (1)-Poly(CI2U) in Chronic Fatigue Syndrome. Robert J. Suhadolnik, Daniel L.Peterson, Paul Cheny et al: In Vivo: 1994:8:599-604), which is perhaps the most important evidence of viral involvement in ME / CFS. This work was well-documented in 1992 on pages 613-617 in the major 724 page textbook on ME. (The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome edited by Byron Hyde, The Nightingale Research Foundation, Ottawa, 1992).

An equally incomprehensible omission is any mention of the work by Daniel Peterson et aI (Clinical Improvements with Ampligen in Patients with Severe Chronic Fatigue Syndrome and Associated Encephalopathy, ibid pp634-638). Ampligen has benefitted patients with HIV / AIDS, hepatitis B and certain types of cancer (HEM Research. Ampligen - Background on an experimental drug for the treatment of HIV infection and AIDS, CFS, several forms of cancer, chronic hepatitis B. NY:Broadgate Consultants Inc., 1990). Mismatched double-stranded RNA molecules correct the impaired antirviral pathway: these findings alone should give credence to a viral aetiology in many cases of ME / CFS, but this research is not once mentioned by the authors of CR54.

(For more evidence of a viral aetiology, see Appendix IV).

Given that until 1955, ME was known as "atypical polio" and given the known link between the post-polio syndrome and ME (see The Clinical and Scientific Basis of ME / CFS, ed. B.Hyde, as above, page 113; see also Myalgic Encephalomyelitis and Postviral fatigue states. AM Ramsay. Gower Medical Publishing, 1988), the failure of these authors even to consider whether polio immunisation renders people more vulnerable to enteroviruses and subsequent ME/ CFS is notable.

Such deliberate attempts to classify ME /CFS as a somatisation disorder and such consistent selectivity is inexcusable in a supposedly authoritative publication from the three joint Royal Colleges.

Chapter 6 / Muscle dysfunction and immunology

This chapter consists of less than one full page, and contains six self-references by the report authors.

There is an extensive literature on both muscle pathology in ME / CFS and there is an even greater literature on the immunological aspects of ME / CFS; both are very important areas in ME / CFS, but are here treated as quite inconsequential.

Chapter 7 / Psychiatry and neuropsychiatry

It can be no coincidence that this chapter takes prominence.

However,even in this chapter the same concern arises, in that the authors are not being careful enough and are not controlling for selection bias.

At paragraph 7.3 the authors claim that "Approximately half of those.. .with a diagnosis of one or other form of CFS fulfill criteria for affective disorder. . . Many studies find that a further quarter fulfil criteria for other psychiatric disorders, chief amongst which are anxiety and somatisation disorders"

At paragraph 7.7 the authors claim "Psychological factors are thus one component of a multifactorial view of the aetiology of CFS. Other factors. . include . . .altered health perception (and) deconditioning" The authors seem unable to understand that if people become seriously ill, it is normal for them to "perceive" their health status differently, because it is different. By what mode can normal perception figure in the aetiology of the disorder?

At paragraph 7.9 the authors claim "Patients with long histories of multiple somatic symptoms (such as) unepxlained abdominal pain, headaches, chest pain, food allergies, chemical sensitivities (and) unresolved gynaecological problems. . .may fulfil. . .established criteria for somatisation disorder".

Paragraph 7.11 expressly states "In CFS, as with fibromyalgia, the greater the number of somatic symptoms, the greater the probability of psychiatric disorder" No mention is made about spectrum disorders, which involve the whole body, most probably at cell membrane level.

It is worth noting that multi-symptomatic patients who may well be victims of medical ignorance and / or arrogance (not to mention medical prejudice) would be abnormal if they were not despondent: diagnostic uncertainty is itself associated with increased anxiety (Diagnosis in chronic illness: disabling or enabling - the case of chronic fatigue syndrome. Woodward R et al; JRSM 1995:88:315-319) and the authors of the joint Report are here confounding the predictors and the criteria of psychiatric disorder.

This short paragraph attempts glibly to explain away as somatisation many of the symptoms commonly found in ME, and it obscures a huge hidden but very important agenda. (see The Lancet article referred to in the present Introduction: p3 above; also pp 130-146 below).

On neuro-imaging, paragraph 7.13 states "neuro-imgaging is a sensitive technique and may reveal "abnormalities" of little consequence". In their attempt at discussing the value of neuro-imaging in CFS, the authors adopt their usual dismissive stance, and suggest that neuro-imaging studies are of limited value on the grounds that confounding factors (such as co-existing depression and anxiety) have not been taken into account in the interpretation of the findings. The authors of CR54 are unequivocal that "there is no justification" for the use of neuro-imaging studies other than as part of "carefully conducted" research (but do not most researchers believe that they conduct their research "carefully"?)

At the Annual General Meeting of the UK ME Association held in London on 5th October 1996, Dr D.C.Costa of the Institutue of Nuclear Medicine at UCL Medical School, London, the foremost ME researcher in nuclear medicine in the UK, gave a lecture in which he explained that hypo-perfusion of the brain stem is the main characteristic apparent on neuro-imaging in ME, and that it is more severe than in AIDS encephalitis, or indeed in any other brain disease he has examined since 1985 in some hundreds of patients.

Chapter 8 / Presentation, assessment, investigation and prognosis

At paragraph 8.9 the authors advise that there is little point in looking at parameters of anti-nuclear factor, immune complexes, immune subsets or cholesterol levels, claiming that "revealed changes" are "rarely substantial".

In Appendix 4 (Summary of the Report), the authors spell this out again: they direct that "No investigations should be performed to confirm the diagnosis".

At paragraph 8.12 the authors include the following as "aims of assessment":

"to elicit the beliefs and fears of patient and family&ldots; to identify psychological distress. . .to formulate the problem in terms of predisposing (and) perpetuating factors": There is scant acknowledgment of the need for adequate clinical screening but, inevitably, there is over-emphasis on the authors' perceived importance of the need to change the patients' beliefs about this illness.

This arbitrary (or possibly expedient) rejecting of the significance of parameters found by other researchers to be abnormal in ME / CFS requires detailed consideration. On every front except the psychological, the Report authors urge against "over-interpreting the abnormalities described to date" (6.5). Not only do they urge this in relation to muscle pathology, but to immunological abnormalities (8.9), to virological evidence (5.5) and to neuro-imaging abnormalities also (7.13).

In many illnesses, patients present with multiple non-specific symptoms such as fatigue, joint pains, irritable bowel, altered micturition: such symptoms may well be due to hypothyroidism, SLE, MS, Addison's disease, chronic brucellosis, rheumatoid arthritis or to other autoimmune overlap syndromes.

Contrary to what the authors of CR54 advise, even supposing that it was certain that no medical explanation for the patient's "fatigue" had been established, it is imperative to carry out detailed laboratory investigations and not to rely on the personal assumptions of the examining doctor; if such an approach is curtailed as non-essential, one must ask what are the prospects of scientific advancement in medicine. Could it be that if ME patients are refused investigation, then no evidence will readily come to light which challenges the psychiatrists' stance, so their position will thus be maintained and (at the expense of some very sick people) their need to exercise power and control will continue to be gratified?

At paragraph 8.16, the authors of the joint Report state "Several studies suggest that poor outcome is associated with social, psychological and cultural factors. These include the strength of belief in a solely physical cause for symptoms .and the use of avoidant coping strategies".

At paragraph 8.17 it states "Chronicity is likely to be associated with perpetuating factors, which may include unaddressed psychosocial issues": One must ask if these psychiatrists would look at "perpetuating factors" or "unaddressed psychosocial issues" in multiple sclerosis, or in the post-polio syndrome, or in lupus, or in AIDS. If not, then why the special pleading in ME / CFS?

It seems that such is the joint Report authors' fanaticism to secure a primary psychiatric aetiology for ME / CFS that they are immoderate in their determination to dismiss any possibility of an organic aetiology.

Their message is clear: only the ill-informed or the naïve would allow themselves to be influenced by "premature" indications of an organic causality: this is a powerful psychological tool which the Report authors are exploiting to effect their own ends.

Chapter 9 / Management

Yet again, the authors of CR54 declare themselves: at paragraph 9.2 they state "We have concerns.. .about the dangers of labelling someone with an ill-defined condition which may be associated with unhelpful illness beliefs".

ME is hardly "ill-defined" (though the psychiatrists' own definition of CFS is less than a paradigm of excellence) and ME is formally classified by the World Health Organisation as a neurological disorder (lCD 10: G 93.3), so it is hardly an "unhelpful illness belief'.

At paragraph 9.6 the authors allude to "pre-existing personality"; at paragraph 9.8 comes the advice that the best way to modulate such attitude problems is by using cognitive behaviour therapy (CBT) (even though there is no evidence of phobic avoidance of activity in ME / CFS and even though evidence superior in design construct confirms that CBT is of no benefit whatsoever in ME I CFS. (Immunologic and psychologic therapy for patients with chronic fatigue syndrome. Lloyd A et al. Am J Med 1993:94:197-203). Notwithstanding, at paragraph 9.9 the authors of CR54 eulogise that "CBT is a promising and cost-effective approach that has been recommended for the. . .management of CFS. . .. the treatment is safe and acceptable".

Inevitably, the report authors state at paragraph 9.20 "We have concerns about the use of complementary therapy and dietary interventions": It might be prudent to reflect that Healthwatch (formerly known as The Campaign Against Health Fraud, with which Weilcome has known and documented associations and for which from its inception in 1989, Wessely has been a leading activist (Dirty Medicine. Martin J Walker, Slingshot Publications 199~3: page 334) states that its aim is to promote publicly the view that "valid clinical trials" (ie. drug trials) are the best way of ensuring public protection", and to oppose "diagnoses that are misleading or false, or that may encourage unnecessary treatment for ... non-existent diseases. (Healthwatch subscription form valid up to 1st May 1990).

It might also be prudent to reflect that Healthwatch exists to attack anything and anyone who challenges the monoply hold of the chemical industry on food production and pharmaceuticals (Dirty Medicine as above, page 340) and that many people with ME have a chronically up-regulated immune response, which means that they can react badly to common substances, particularly to medical

drugs: (I) The presentation, assessment, investigation and diagnosis of patients with Postviral Fatigue Syndrome in an Infectious Diseases Clinic. W. R. C. Weir. In: Postviral Fatigue Syndrome. Eds. Rachel Jenkins and James Mowbray. John Wiley & Sons, 1991; (ii) Allergy and the chronic fatigue syndrome. Stephen E.Straus et al. J Allergy Clin Immunol 1988:81:791-795; (iii) The Disease of a Thousand Names. D. S. Bell. Pollard Publications,Lyndonville, New York, 1991; (iv) The Florence Nightingale Disease: A Multisystem Experiment of Nature.

H.Hugh Fudenberg. In: The Clinical and Scientific Basis of Myalgic Encephalomyelitis, ed. B. Hyde, Ottawa 1992; (v) The Role of Food Intolerance in Chronic Fatigue Syndrome. Loblay RH., ibid,pp 521-538; (vi) Chemical Sensitivity: The major cause of ME?. Rea WJ. Public Lecture, Birkbeck College, London,3rd December 1993; (vii) The Differential Diagnosis between Chronic Fatigue Syndrome and Multiple Sclerosis. C. M.Poser. Presentation at the International Conference on Chronic Fatigue Syndrome, Dublin, 18-20th May 1994; reported in Perspectives, June 1994).

At the Dublin conference,Professor Poser said that a paradoxical or inappropriate response to medication was one of the most important criteria in CFS, and that it was virtually pathognomonic.

Because of adverse reactions to so many substances, including medicinal drugs, patients with hypersensitivities may of necessity turn to "complementary therapy and dietary interventions" provided by clinical ecologists or allergy practitioners, who tend to advocate non-drug therapies and who thus become the target of Healthwatch activists (Dirty Medicine as above, p 341).

At paragraph 9.23 (management by drug therapy), the Report authors state that "we see no role for immunotherapy. There is no compelling evidence linking immune dysfunction with disability":

Inevitably, in the Summary, the Report authors specifically recommend "controlled clinical trials of antidepressants for CFS sufferers without symptoms of depression" - Appendix 4:12.

Chapter 10 / Children and CFS

At paragraph 10.2 the report authors state "CFS in children covers a broad spectrum of problems. . .perhaps even.. . Munchausen's by Proxy Syndrome":

The authors are against home tuition and at paragraph 10.12 they advocate "immediate return to school":

At paragraph 10.14, they advise of the need to remove children forcibly from their home and parents, if this is "in the best interest of the child": (cf.p.5 above).

This chapter is perhaps the most disturbing of any in the joint Report. Yet again, the tenor of this chapter relies heavily on selectivity and bias, with no attempt to present a balanced overview of the available literature reviewed by experienced physicians.

Chapter 11 I Future Research

The authors state that they "are satisfied that the normal processes of supporting sound research are adequate": What is not mentioned is that in 1992, the Medical Research Council granted £1 million for research into "CFS", or that this grant was available only to The Institute of Psychiatry, or that all applications for funding had to be made to Dr Simon Wessely** (personal communication, and it was also announced publicly at medical meetings).

"**The authors were relying on information which was currently available and in the public domain, and which emanated from a senior and well respected NHS professional, but in correspondence with the Countess of Mar, Wessely takes issue upon this point and says the grant was for £92,000, not £1 million.

However, it has been confirmed by Sir Kenneth Calman (former CMO) on 11th March 1998 that the Linbury Trust has funded research into CFS amounting to £4 million; together with reported funding from the MRC (medical research council), the total is understood to be £5 million (see "Chronic Fatigue" and The Linbury Trust Research Portfolio --- A Clear Guide to Tunnels which may Extinquish the Light, by Dr Betty Dowsett. ( The QUARTERly - Newsletter for the 25% ME Group, December 1998, p26."

Chanter 12 / Facilities and service provision

Predictably, the Report authors state "we see no reason for the creation of specialist units", at paragraph 12.4 the authors state "we do not think that specific guidelines on the management of CFS should be issued for general practitioners":

Chapter 13 / Conclusions

ME is dismissed.

At paragraph 13.3 the authors state "Previous studies have counted people with ME, but these studies reflect those who seek treatment rather than those who suffer the symptoms".

How curious then that in lCD 10, the World Health Organisation should have overlooked this and should have formally classified ME as a neurological disorder.