Margaret Williams: HAS THERE BEEN SCIENTIFIC MISCONDUCT REGARDING MYALGIC ENCEPHALOMYELITIS IN THE UK?

[Countrygirl]

HOT OFF THE PRESS!

The third part of the trilogy on Prof Sir Simon Wessely



HAS THERE BEEN SCIENTIFIC MISCONDUCT REGARDING MYALGIC ENCEPHALOMYELITIS IN THE UK?

Margaret Williams July 2025

With grateful acknowledgement to Jenny Wilson, Associate Member, Doctors for ME​

This document raises questions and serious concerns expressed by members of the myalgic encephalomyelitis (ME) research and patient communities regarding the conduct, influence and publications of psychiatrist Professor Sir Simon Wessely and his colleagues in the “Wessely School” in relation to ME (to which he synonymously refers as “chronic fatigue syndrome” or “CFS”). It draws upon publicly available sources and does not allege illegal or criminal wrongdoing, but rather highlights the urgent need for thorough institutional and ethical review in light of potential patient harm and the continued misrepresentation of medical science.

Brief Background

From about 1988, Sir Simon began his campaign to re-categorise ME as a psychiatric disorder. Subsequently, psychiatrists in the Wessely School who worked for the health insurance industry decided that if the name “ME” was specific to a serious, chronic and untreatable neurological disorder, then health insurance companies such as UNUM could face meltdown. They believed that a generally-named illness without a specific cause was required. Subsuming ME into the non-specific term “chronic fatigue” would pose less of a threat to company profits. Moreover, an “illness” is not a disease, but a behavioural condition (the word “disease” is only applicable when there is objective, medically diagnosable pathology). Their published objective was that “ME” should disappear – it would be obliterated and eradicated. On the other hand, antidepressants were the boom industry of psychiatry, so Big Pharma also saw its chance.

There is a known culture of psychiatrists being well-rewarded financially by Big Pharma for promoting their drugs and some could receive up to $10,000 per talk for doing so – currently about £7,000 plus air fare and hotel costs (Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness. Martin J. Walker. Slingshot Publications 2003 -- this book looks at how psychiatry came to re-define ME as a psychiatric disorder and created a vast pool of patients with a wide variety of fatigue-like symptoms for which antidepressants could be prescribed).

From the early 1990s, a powerful coalition between UK government policy-makers and the Wessely School came into existence and was actively involved in the re-categorisation of ME from a WHO-classified neurological disorder to a somatoform (ie. mental) disorder.

Also involved in the drive to change the status of ME was Dr Mansel Aylward, then Chief Medical Officer at the DSS, who was supported by Dr Adrian Furness. Their correspondence in 1992 and 1993 is unambiguous and leaves no doubt about their intention: ME was not to be considered as a separate disorder from chronic fatigue syndrome (CFS) and CFS is a somatoform disorder.

The Disability Living Allowance Advisory Board was preparing its revised Handbook when, on 10th January 1992, Sir Simon wrote to Dr Aylward about the draft entry for ME: “I have been particularly concerned in the area of rehabilitation of CFS patients and was therefore most interested to read the proposed guidelines…I think they are based on a misinterpretation of some of the published research…I and my colleagues consider that anxiety about the consequences of activity is one factor perpetuating disability in CFS patients…I hope that the guidelines will not perpetuate the idea that CFS is both of poor prognosis and untreatable…I have advised that CFS should not be grounds for permanent disability”.

On 13th October 1993 Dr Aylward wrote to Sir Simon: “The prognosis for those who acquire the label of ‘ME’ is at the moment poor…It is a treatable disorder but its management is deplorable at present, the worst thing to do is to tell them to rest. Rehabilitation is essential, exercise is good for these patients, prolonged inactivity causes adverse physical and psychological consequences…As regards benefits – it is important to avoid anything that suggests that disability is permanent, progressive or unchanging. Benefits can often make patients worse”.

In the Handbook, ME was then accepted as a separate disorder for which a consensus agreed that “affected people remain disabled, make little or no progress, or even deteriorate over time”. However, on 10th November 1993 psychiatrist Dr Peter White from St Bartholomew’s Hospital, London, wrote to Dr Aylward advising that separating the two conditions ME and CFS “may enhance disability” because “those who believe in the separate existence of ME believe this is a totally physical condition, probably related to immune dysfunction or persistent viral infection (for) which no treatment is available. On the contrary…the present evidence suggests that…treatments and rehabilitation programmes are available which address both the physical and psychological factors that maintain this syndrome”.

The outcome was that “ME” became “CFS” and CFS was to be categorised as a somatoform disorder.

Given the substantive published evidence of pathology already known to exist in ME when these somewhat protracted discussions took place, the fact that a somatoform disorder can only be so classified in the absence of an adequate physical explanation (WHO ICD10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines, Geneva, 1992) seems to have been overlooked.

Central to this transformation was the publicising of the psychiatrists’ “biopsychosocial” (BPS) model. This appears to be based upon the 1977 model advocated by George Engle, which posits that: “illness and health are the result of an interaction between biological, psychological and social factors”. Despite its promotion as a compassionate synthesis of biological, psychological and social elements of illness, the Wessely School’s BPS model in reality was a blunt tool used to psychologise, de-legitimise and sideline the biomedical aspects of ME.

This transformation was strengthened when in 1994 Simon Wessely stated in his Eliot Slater Memorial Lecture: “I will argue that ME is simply a belief, the belief that one has an illness called ME”. This categorised patients with ME as psychologically compromised and as misattributing normal bodily sensations to symptoms of a non-existent illness. Sir Simon’s views, widely disseminated through his publications, the media, policy briefings and medical education, fostered a growing atmosphere of suspicion around patients with ME – an atmosphere that resulted in their ridicule and abandonment by mainstream medicine.

Aylward and other BPS proponents produced a series of documents that embedded their BPS model into social and disability policy. Their 2005 report “The Scientific and Conceptual Basis of Incapacity Benefits” drew heavily on Sir Simon’s psychogenic model of ME, which taught that long-term illness was often perpetuated by “false illness beliefs” and deconditioning as a result of inactivity. State benefit claimants with ME were specifically targeted and their benefits were denied or withdrawn (even from those whose award was “life-long”).

By subsuming “ME” into the general term “chronic fatigue” (and calling it “CFS”), the Wessely School dispossessed a large number of people -- now thought to be about 400,000 in the UK – not only of their authentic organic disorder but also of benefits, specific investigations, symptomatic management and insurance cover. Anyone in the UK who developed a seriously disabling post-viral disorder would suffer from an invalidated illness.

The health authorities were duly advised by the Wessely School that there was no need for any specialist facilities for “CFS”, so the NHS has no specialist referral clinics other than to a psychiatrist.

For ME patients, this convergence of ideology and policy had devastating consequences. Biomedical research into ME was deprioritised, dismissed and prevented, with funding bodies rejecting grant applications from scientists wishing to study the pathophysiology of ME. Instead, funding focused on psychosocial interventions, including Sir Simon’s own version of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). These interventions were strongly promoted despite mounting evidence – including patient testimony – that exertion exacerbated their symptoms, sometimes irreversibly. Those who challenged the psychiatrists’ model of ME were vociferously branded as “militants” or accused of sabotaging research, and those who sought more scientific rigour were denounced as threats to clinical orthodoxy.

This institutional contempt filtered down into everyday clinical practice, with ME patients being accused of malingering; they were denied laboratory investigations and many were left housebound or bedridden, struggling not only with their life-wrecking illness, but also because of dismissal and neglect from the very system whose role was to support them but which disbelieved them.

A reversal of this damaging legacy is long over-due. It must begin with the re-instatement of ME by UK Departments of State as a serious, complex, chronic, organic disorder deserving of appropriate medical support and humane treatment of sufferers.

The lack of such provision in the UK is attracting international opprobrium, for example, from Professor Carmen Scheibenbogen, Professor of Immunology and Deputy Chair, Institute of Medical Immunology, at the University Hospital Charité in Berlin, who has published her concern about the Wessely School’s decades-long control over all aspects of ME (“Why the Psychosomatic View of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is Inconsistent with Current Evidence and Harmful to Patients”: 31st December 2023 (Journal of Clinical Medicine 2023:12(24)8345 https://doi.org/10.3390/jcm122483345 ).

“A vocal minority of researchers remains convinced of a psychosomatic…causation of ME/CFS despite the frequently demonstrated organic abnormalities and the simultaneous lack of evidence for relevant psychosomatic factors. The striking discrepancy between the strong conviction among proponents of a psychosomatic aetiology of ME/CFS and the simultaneous lack of evidence for this view has also been observed in other scientific fields. Research shows that…individuals who strongly disagree with the scientific consensus are, on average, less knowledgeable about the topics than others but are more convinced of their knowledge.

“Contrary to psychosomatic hypotheses, replicable organic abnormalities are evident in ME/CFS. The most important replicated abnormalities include a significant reduction in cerebral blood flow, endothelial dysfunction, a reduction in systemic oxygen supply, a reduced peak oxygen consumption, an increase in ventricular lactate levels, hypometabolism and increased levels of autoantibodies against G-protein-coupled receptors. Many organic abnormalities found in ME/CFS correlate with symptom severity, indicating a relevant role in the disease process.

“In addition to ME/CFS itself, the lack of medical care and social support is particularly burdensome for those affected. In the health care system, patients with ME/CFS have to reckon with medical gaslighting and sometimes severe maltreatment – physicians convince patients…that they are psychosomatically ill. When admitted to hospital or rehabilitation programmes, patients with ME/CFS who are wrongly classified as having a psychosomatic illness are threatened with mistreatment, including activity-increasing therapies like GET that can seriously harm them”............................................................

 

[southwestforests]

tl;dr, Yes.