Introduction

Denigration By Design

Introduction

In August 1996 we produced a 217 page referenced review in which we attempted to consider the role played by Dr - now Professor-Simon Wessely in the perception (both medical and public) of myalgic encephalomyelitis (ME) in the years 1987 - 1996 (Denigration by Design? A Review, with References, of the Role of Dr Simon Wessely in the Perception of Myalgic Encephalomyelitis, 1987 - 1996. Eileen Marshall & Margaret Williams, September 1996). In it, we considered Wessely's status, his tactics, others involved (ie. psychiatrists with whom he frequently and regularly collaborates in publishing his own views), legitimate research findings about ME with which he openly disagrees, illustrations of those research findings, and a review of Wessely's published works on ME/CFS. We considered his lack of balance and his obvious bias, his part in the "organic" - v - "functional" debate, the harm done to sufferers of ME by Wessely, some losses sustained by those sufferers as a result of Wessely's denigration of their suffering, and we listed 39 questions which we believe Wessely could usefully be required at address (for example: why does he not visit the more severely affected in their own homes, so that they, too, can be included in his trials; in what percentage of his patients has he carried out a water-loading test; what percentage of his patients show an increased CD4-CD8 ratio; what percentage of his patients have a clear-cut vestibular lesion; what percentage of his patients have undergone muscle biopsies subjected to polymerase chain reaction (PCR); what percentage of his patients have vascular problems; what percentage have positive autoantibodies; why does he assume that people with ME /CFS are invariably benefitting by "adopting the sick role" when he has never published any proof that this is so, and why has he never attempted to consider the losses his patients have sustained).

There was little original material in our literature review and it was never intended for publication but rather as a compendium of ready reference for lawyers and medical practitioners involved in trying to assist patients overcome seemingly insuperable problems (most notably the problem of the credibility of their suffering and disability) with which they found themselves grappling.

The review received some acclaim for what it was: a reasonably comprehensive overview of Wessely's published works on ME / CFS. Copies were requested from all over the UK, America, Australia and the Netherlands.

We would hope that we showed why the problem of credibility in ME is such a major issue in medico-legal situations, and that we demonstrated the key role played over that decade by Dr Simon Wessely in the creation of this widespread problem.

Has anything changed in the last three years?

Sadly, it seems that little has changed. Despite excellent international published research papers showing definite neuro-endocrine-immunological deficits in ME, and despite the advances in understanding about ME revealed by nuclear imaging of the brain, problems of definition remain, with the same group of psychiatrists still claiming that ME is merely a form of somatisation.

Recently, the Lancet carried an article by Wessely and Mike Sharpe (Functional somatic syndromes: one or many? S. Wessely, C.Nimnuan, M. Sharpe: Lancet: September 11, 1999:354:936-939) in which they claim to review the literature on syndromes such as irritable bowel syndrome, chronic fatigue syndrome, pre-menstrual tension syndrome, fibromyalgia, temporomandibular joint pain, tension headache, atypical chest pain, multiple chemical sensitivity and globus hystericus; they assert that the similarities between all these syndromes (the authors believe that the "similarities" are that they are all "functional" and all occur predominantly in women) outweigh the differences, and urge that all these "functional" syndromes be converged into one diagnostic category of somatisation, which they define as a "functional somatic syndrome, or one that after appropriate medical assessment cannot be explained in terms of a conventionally defined medical disease". The authors state that "many of these syndromes are dignified by their own formal case definition" and they "question this orthodoxy and ask whether these syndromes represent specific diagnostic entities", and postulate that "the existence of specific somatic syndromes is largely an artefact of medical specialisation". The authors urge that the acceptance of distinct syndromes as defined in the medical literature should be challenged, and state that they are currently attempting to do just that.

It is perhaps worth mentioning here that the DSM IV (American Psychiatric Association Diagnostic and Statistical Manual of Psychiatric Disorders, 4th edition, Washington DC 1994) somatisation disorder criteria do not mention fatigue syndromes)

Thats same week, delegates at the Brussels international conference on CFS/ME were told that CFS/ME had finally escaped from the psychiatrists' ascription of somatisation disorder; this would be welcome, but such a view may be over-optimistic, as this present review may demonstrate.

Regrettably, the common usage of the various terms [ME (myalgic encephalomyelitis), CFS (chronic fatigue syndrome), CF (chronic fatigue), PVFS (postviral fatigue syndrome) and CFIDS (chronic fatigue and immune dysfunction syndrome, which is the favoured American term for ME, ie. for those chronically and severely affected by the most severe of all the CFS subsets] as synonymously interchangeable continues to hamper both research and approaches at clinical management.

In the previous review we attempted to include as many as possible of Wessely's published papers in order to demonstrate the sheer extent of the onslaught on those with a diagnosis of ME, which he and his like-minded psychiatrist colleagues continue to insist be called Chronic Fatigue Syndrome: it remains a cause of concern that their own criteria for what they term "chronic fatigue syndrome" specifically exclude the cardinal neurological problems long documented in the international ME literature. (The 1991 criteria - known as the Oxford criteria arose from a meeting consisting of 21 clinical and scientific researchers of whom 8 (38%) were psychiatrists or psychologists: it was convened by three psychiatrists and chaired by a fourth, Professor Anthony Clare who, with some exasperation, informed those present that there was only one reason for calling the meeting and that was "a group of patients with a cluster of symptoms who get a lot of publicity": [Consensus on research into fatigue syndrome: BMJ 1990: 300:382]. The 1994 (revised) criteria were issued by the Centres for Disease Control (CDC), in the formulation of which both Sharpe and Wessely were named as being involved. In both these definitions, the psychiatrists extended the criteria to include all medically unexplained "fatigue" of at least six months' duration. In the 1994 definition, it was additionally stipulated that they were dropping all physical signs from their inclusion criteria. Both these definitions specifically include psychiatric conditions which are known to be associated with prolonged fatigue. Further, the 1994 definition advises against doing screening tests, but states "we consider a mental status examination to be the minimum acceptable level of assessment".

In this update, some illustrative examples are provided, with no claim whatsoever to have produced a comprehensive review of Wessely's published output on CFS / ME over the last three years 1996 -- 1999.

Nevertheless, it is hoped that this update will provide enough examples to show how little has changed in the understanding of medical science by psychiatrists of the "Wessely School".

For example, 10 years after Wessely was instrumental in getting a child with ME forcibly removed from his parents and taken under police presence into "care", (see Denigration by Design? Marshall,E & Williams. M. 1996, pp 65 -68, which deals with Wessely's involvement in the tragic case of Ean Proctor),children and distraught parents are still being placed in that same intolerable situation, as will be shown in a forthcoming BBC Panorama programme scheduled for transmission in November 1999.

Wessely seems to have become confused, for in a Channel 4 News programme broadcast at 7pm on 26th August 1998 in which the case of Child X was being discussed, when asked by the presenter Sheena McDonald if there can ever be a case for a coercive approach in situations involving forcible removal of a child with ME from the parents, he stated (verbatim quote) "You know very well, I know nothing about these cases.....' and when Sheena McDonald interposed by saying "So you would agree that unless there is criminal abuse there is never a case for a coercive approach to take children away from parents?", Wessely replied (verbatim quote) "I think it's so rare; I mean it's never happened to me. We've seen lots of children and families and it's just not on the agenda". This contrasts markedly with what Wessely wrote in a letter dated 3rd June 1988 to the Principal Social Worker in Ean Procter's case (Mrs Jean Manson), in which Wessely states that he is "approved under Section 12 of the 1953 Mental Health Act" and in which he wrote (quote): "I feel that Ean needs a long period of rehabilitation, part of which will involve very skilled management of separation from his parents. For this reason, I support the application made by your department for wardship".

This letter was written by Wessely in his capacity as Senior Registrar in Psychiatry at The National Hospital for Nervous Diseases, London, and unequivocally reveals that despite his ardent assurances to Sheena McDonald on national TV that he had never been personally involved in cases of children being forcibly removed from their parents and being subjected to psychiatric treatment, Wessely has been personally involved, and that he personally advised the local authorities to take the action they did.

Moreover, just a short time after his denial on the Channel 4 broadcast, Wessely once again repeated on air his denial of personal involvement in the forcible removal of children with ME from their parents: on 13th September 1998 Radio 5 Live broadcast a programme entitled "Child Abuse by Professionals" (Brian Hayes, Sunday 13th September 1998, 10am -12 noon), and Wessely again claimed never to have been involved in such cases.

(Copies of Wessely's letters and audio / video tapes available if required).

In the original review, we provided for comparison a short selection of published papers which revealed aspects of ME which differed from the extensively proclaimed views of Wessely; likewise in this update, we provide a random selection of other people's work on ME which has been published in the same period as the one under review (1996-1999). No attempt has been made to classify these illustrations into sections (for example, neurological, endocrinological, immunological, cardiac, neuropsychological, virological etc); all are merely listed according to the year of publication.