http://www.meactionuk.org.uk/Wesselys_Way.htm
Wessely's Way: Rhetoric or Reason?
Malcolm Hooper Margaret Williams
22nd March 2008
On 22nd March 2008 the Financial Times carried an item by Glasgow GP Dr Margaret McCartney ("If it's in the mind, it's still the real thing") in which she stated that neither ME - to which she referred as "myalgic encephalitis" instead of the correct term myalgic encephalomyelitis - nor fibromyalgia (FM), nor repetitive strain injury (RSI) nor irritable bowel syndrome (IBS) "has a clear pathological or biochemical abnormality". She went on to confirm: "It's certainly true that many doctors see these kinds of symptoms as an irritating and time-consuming diversion from 'real' pathology".
Unfortunately for ME patients in the UK, such comments are nothing new.
The person whose work has had most impact on their lives is psychiatrist Professor Simon Wessely, whose twenty-year published record on ME patients underpins such ill-informed comments, for example:
"The description given at the Mayo Clinic remains accurate: 'The average doctor will see they are neurotic and he will often be disgusted with them' " (In: Psychological Disorders in General Medical Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)
"Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validity (and) is beneficial to self-esteem by protecting the individual from guilt and blame" (In: Post-Viral Fatigue Syndrome. ed: James Mowbray and Rachel Jenkins. John Wiley & Sons, 1991)
"It seems that ME sufferers prefer to feel they have a 'real' disease - it is better for their self-esteem" (Pfizer Invicta Pharmaceuticals 1992:4-5) "Patients with inexplicable physical symptoms are generally viewed as an unavoidable, untreatable and unattractive burden" (Brit J Hosp Med 1994:51:8:421-427)
"Somatisation sufferers consume vast amounts of health resources for little benefit" (Clin Exp Allergy 1995:25:503-514) "The term ME may mislead patients into believing they have a serious and specific pathological process. Several studies suggest that poor outcome is associated with social, psychological and cultural factors" (Joint Royal Colleges Report on CFS, October 1996)
"ME has never been fully accepted as a real condition, says Simon Wessely" (The Guardian, 21st April 1998). Note that the World Health Organisation fully accepted ME as a real condition in 1969 and continues to do so
"It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering" (BMJ 2003:326:595-597)
"Science is indeed socially controlled, and so it should be" (The Guardian, 1st March 2003)
"Functional somatic syndromes include chronic fatigue syndrome" (Rev Bras Psiquiatr 2005:27:3). This is noteworthy, given that Wessely is on public record as stating: "I don't classify CFS as a somatoform disorder" (Wessely Answers Questions. 10th April 2002: CAME).
From the above quotations, it seems there may be an explanation why doctors such as Dr McCartney are so misinformed.
However, not only does it seem that Dr McCartney has been careless over her terminology but it also seems she has not kept abreast of the medical science that has revealed the pathological and biochemical abnormalities now known to underpin these disorders.
Moreover, she claims that the recommendation for cognitive behavioural therapy (CBT) in the NICE Guideline on "CFS/ME" does not imply a psychological cause because "behavioural treatments can be used to improve the quality of life of people who have diabetes, asthma, or cancer". This is undoubtedly so, but the key differences that seem to have been overlooked by Dr McCartney are that in those disorders, appropriate investigations and effective interventions are not ignored or proscribed and, importantly, behavioural therapy is an adjunctive and not the primary - indeed the sole - management recommendation as it is in ME/CFS.
Dr McCartney harks back to the much-criticised 1999 paper by psychiatrists Simon Wessely and Michael Sharpe in The Lancet ("Functional somatic syndromes: one or many?": Lancet 1999:354:936-939) and she quotes with seeming approval Professors Wessely and Sharpe: "The existence of specific somatic syndromes is largely an artefact of medical specialisation". Apart from the Lancet article to which she refers, Dr McCartney will doubtless be aware of Wessely's views on ME/CFS, fibromyalgia (FM), Gulf War Syndrome (GWS), the Camelford water poisoning catastrophe, the effects of chronic low-dose organophosphate (OP) poisoning and the adverse effects of mobile phones, since Wessely has not been reticent in publicising his views. He is certain that such disorders do not exist and that people who claim to suffer from them are deluding themselves because, he says, they are actually suffering from a mental (somatisation) disorder which, to quote Dr McCartney, is "the phenomenon of translating mental distress into physical symptoms". Wessely is certain that such symptoms are merely "the modern preoccupation with the state of our environment" and that they occur in "a few individuals with pre-existing somatisation disorders (and are) then diverted to fall in line with the prevailing ("disease"). Future investigations of environmental incidents should recall that social and cultural factors are as important as medical ones" (The Legend of Camelford. Anthony S David and Simon C Wessely. Journal of Psychosomatic Research 1995:39:1:1-9 --- see below).
The denial of the very existence of such disorders has become Wessely's trade-mark.
It was captured in the New Statesman almost a decade ago when in February 1999 Ziauddin Sardar wrote "Ill-defined notions": "When is someone sick, really sick? Who decides? By what criteria? The only thing that is certain is that you are only ill when someone says you are ill. Consider syndromes. Once this was a name for a collection of symptoms for which no clear cause had yet been found. Now it stands for a bunch of symptoms lacking even the security of certainty that they are actually there. Most notorious is 'chronic fatigue syndrome', known as 'ME'. Horror stories abound of people whom the psychiatric experts considered just to be faking. The same can be said of Gulf War syndrome. Even though 400 veterans have actually died and some 5,000 are suffering from illnesses related to Gulf War syndrome, the syndrome does not officially exist. Wessely has been arguing that ME is a largely self-induced ailment that can be cured by the exercise programme on offer at his clinic. Recently he published the results of 'the most definitive study' of Gulf War syndrome in the Lancet. It concluded - surprise, surprise - that there is no such thing as Gulf War syndrome. Clearly, Wessely is a follower of Groucho Marx: 'Whatever it is, I deny it' ".
These are profoundly serious issues in which Professor Wessely seems to have been shown to be completely wrong, yet no-where has it been possible to find a retraction of, let alone an apology for,the incalculable damage that many people believe his misinformed opinions and policies have caused. Although psychiatric disorders are diagnosed on opinion and not on a definitive diagnostic test, Professor Wessely demands "evidence-based medicine" supported by a definitive test and specific biomarkers before he will accept the reality of ME/CFS. Whilst there is as yet no specific diagnostic test, there is an abundance of biomarkers which support the diagnosis, but Professor Wessely continues his determined and sustained denial and dismissal of this scientific evidence that clearly proves him to be wrong.
As Philip Steer, Emeritus Professor, Imperial College, London, asks in the current issue of the British Medical Journal: "Could strict adherence to evidence-based practice be harmful to patients?" and he notes that: "'Conviction politicians' may be popular, but conviction doctors are potentially dangerous" (BMJ 2008:336:673).
Of even more concern is the fact that, despite having been shown to be so wrong about, for example, the Camelford disaster, Gulf War syndrome, the dangers of mobile phones, the nature of IBS, the nature of fibromyalgia and the nature of ME/CFS (for evidence, see below), Professor Wessely's influence over Government policy continues unabated.
The influence of his team in the NICE Guideline on "CFS/ME" featured in the 2007 R&D (Research & Development) annual reports by NHS organisations in England, in which the South London and Maudsley NHS Trust stated in section 2A ("Examples of impact on health and social care"): "We begin by summarising key achievements and follow with six examples that illustrate the impact of our research". The section on "Chronic Fatigue Syndrome" boasts: "In October 2006 NHS Plus published Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline. It was accompanied by two additional leaflets, one for Health Care professionals and one for employers. This report was heavily influenced by research carried out at our Chronic Fatigue (sic) Unit. The NICE CFS/ME guideline also includes priority recommendations to which our research, led by Trudie Chalder and colleagues, has contributed: 'When the adult or child's main goal is to return to normal activities, then the therapies of first choice should be CBT or GET because there is good evidence of benefit for this condition in mild to moderately affected adults and some evidence in mild to moderately affected children'. As a result of our research we have developed our chronic fatigue syndrome service to include treatment at home. In addition we now offer telephone treatment routinely after demonstrating its effectiveness".
ME/CFS On 18th March 2008 The Daily Telegraph carried an item entitled "ME: 'Invisible disease' is now easier to read" by Bob Ward, who reported on the work of Dr Jonathan Kerr of St George's University of London (published in the Journal of Clinical Pathology and to be presented at an ME Research UK [MERUK] biomedical conference at the University of Cambridge on 6th May 2008). The article pointed out that Kerr's team has identified 88 genes that produce different levels of proteins and other molecules in ME/CFS compared with controls. In 2005 Kerr carried out a complex analysis and found that patients with ME/CFS can be divided into seven clinical sub-types according to specific gene combinations and the severity of symptoms. The most severely affected patients had 71of the 88 gene abnormalities. In his follow-up paper to which the Telegraph article referred, Kerr's earlier work was confirmed: (J Clin Pathol 2007: doi:10.1136/jcp.2007.053553): "In this study, for each CFS/ME subtype, we determined those genes whose expression differed significantly from that of normal blood donors. Genomic analysis was then related to clinical data for each CFS/ME subtype. Genomic analysis revealed some common (neurological, haematological, cancer) and some distinct (metabolic, endocrine, cardiovascular, immunological, inflammatory) disease associations among the subtypes. It is particularly interesting that in these genomically derived subtypes, there were distinct clinical syndromes, as would be expected in a disease with a biological basis".
Other researchers have noted that patients with ME/CFS can have "a genetic predisposition to an immunomodulatory response of an inflammatory nature, probably secondary to one or more environmental insults" (N Carlo-Stella et al. Clin Exp Rheumatol 2006:24(2):179-182). One would think that such evidence would lead to a change in attitude by Wessely School psychiatrists towards ME/CFS, but as has been noted countless times by many people, nothing seems to stop Wessely's influence on Government policy: a current example is the forthcoming conference on "CFS" to be held at The Royal Society of Medicine on 28th April 2008, about which Dr Derek Enlander from New York wrote on 21st March 2008 to the Editor of the Daily Telegraph: "Your article on gene research in ME was a breath of fresh air in the stale atmosphere of UK Government funded research. Over the years it has been shown to be a physical disease. The cause is obscure (and) this obscurity has been masterfully used by psychiatrists to claim that the disease is a manifestation of a psychiatric condition. What arrogance! The Royal Society of Medicine plays to this theme by running a conference on ME/CFS. The speakers are dwelling mainly on psychiatry - rather peculiar for a Society of Medicine. As far as I know the RSM has not noted these physical aspects. The Government through NICE continues to waste money on proven bad methods of treatment which, in a large number of cases, cause relapse. Surely, by now, the Government should be embarrassed". That ME/CFS is not a somatisation disorder is now beyond doubt because there is overwhelming evidence confirming it to be a multi-system organic disorder in which there is disruption of virtually every system in the body (for evidence, see http://www.meresearch.org.uk/information/researchdbase/index.html and http://www.meactionuk.org.uk -- between them, these sites contain over 3,000 published papers demonstrating that ME/CFS is not a psychiatric disorder). The item published on 18th March 2008 in The Daily Telegraph to which Dr Enlander referred above was indeed a breath of fresh air. As noted by Dr John Greensmith in his response: "There has been ample research evidence for M.E. as a discrete illness since 1956 and it has been endorsed by the WHO as a neurological illness since 1969, yet the Government's advisers, who are dominated by psychiatrists, have tampered with the M.E. entry in the British version of the WHO handbook (though it remains untouched in other countries) and have recommended two treatments on the basis of questionable research evidence, one of which, cognitive behavioural therapy (CBT) has no lasting benefit for people with M.E. and the other, graded exercise therapy (GET) may leave some patients irrecoverably worse. They say that they do not believe that M.E. is 'all in the mind' (but) since most patients are treated by psychiatrists, using treatments developed for psychiatric illnesses, most often in psychiatric units of hospitals, it is hard to think how otherwise they would treat them if they did believe it was of psychiatric origin. The situation does not look set to change. Indeed, a Royal Society of Medicine conference to be held on 28th April 2008, to which selected delegates have been invited and others told that they should not attend, is expected to recommend that this unproven service should be expanded" ( drjohngreensmith@mefreeforall.org ).
Nancy Klimas, Professor of Medicine at the University of Miami and an international expert on ME/CFS, affirmed: "Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society" (AACFS In-coming Presidential Address: Co-Cure 21st March 2005).
In January 2008, Klimas went on record: "As an immunologist, I once would have said (ME)CFS is clearly an immune dysfunction state, while an endocrinologist would have called attention to the adrenal gland irregularities, and a specialist in the autonomic nervous system would be convinced (ME)CFS is all about blood pressure abnormalities. Given what we've discovered about the illness, I now tell people (ME)CFS is all of these things. We know that (ME)CFS has identifiable biologic underpinnings because we now have research documenting a number of pathophysiological processes involving the brain, the immune system, the neuroendocrine system and the autonomic nervous system" (Historical perspective. Nancy Klimas. In: "Defining Moments - 20 years of making CFS History", published by the CFIDS Association of America, January 2008).
It is regrettable that such pronouncements do not receive anything like the publicity that Professor Wessely's pronouncements receive.
The latest evidence demonstrating the key finding that there is a low-grade inflammatory response in ME/CFS was published on 21st March 2008 in Clinical Science (VA Spence et al: Clinical Science 2008:114(8):561-566); this important paper adds to the existing body of scientific knowledge about ME/CFS that shows excessive cytokine production, disruption of the HPA axis and dysfunction of the autonomic nervous system, none of which can credibly be attributed to a behavioural disorder that is amenable to psychotherapy.
Professor Wessely and other members of the "Wessely School" simply ignore all this scientific evidence that proves them wrong and they remain committed to their own unshakable beliefs, which many people believe have resulted in unnecessary suffering of innumerable sick people.
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