APPENDIX 1 The published views about ME/CFS of those involved with the PACE Trial
The Chief Principal Investigator, Professor
Peter White does not accept that ME/CFS is an organic disease and asserts that it is an abnormal illness belief.
He believes that in general, medicine is currently travelling up a blind alley (and) this blind alley is the biomedical approach to healthcare. The biomedical model assumes that ill-health and disability is directly caused by diseases and their pathological processes (but) there is an alternative approach -- the biopsychosocial approach is one that incorporates thoughts, feelings, behaviour, their social context and their interactions with pathophysiology (Biopsychosocial Medicine: An integrated approach to understanding illness edited by Peter White; OUP 2005).
Many people believe it is a retrograde step to reject the hard-earned scientific evidence gained over centuries that ill-health is directly caused by disease and its pathological processes; further, they reject the notion that the correct approach to healthcare should be primarily the psychosocial one, in which aberrant thoughts, feelings and behaviour can supposedly be modified by the Wessely Schools own brand of cognitive restructuring with graded aerobic exercise (CBT/GET), resulting in restoration of health and in economic productivity for the State.
In a major medical textbook (Clinical Medicine: Kumar and Clark, 5th edition), together with the late Professor Anthony Clare, Peter White contributed the section on Psychological Medicine. The entry for Myalgic Encephalomyelitis directs the reader to the entry for CFS, which in turn directs the reader to Section 21 (Psychological Medicine) where CFS/ME is listed under Functional or Psychosomatic Disorders: Medically Unexplained Symptoms and White asserts that the psychiatric classification of these disorders is somatoform disorder, which he states were previously known as all in the mind, imaginary and malingering.
Principal Investigator Professor
Michael Sharpes published views about ME/CFS include the following:
The label of CFS avoids the connotations of pseudo-disease diagnoses such as ME (Occup Med 1997:47:4:217-227).
Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service (ME. What do we know (real physical illness or all in the mind?) (Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde).
My own view has long been that the issues around CFS/ME are the same as those surrounding the acceptance and management of (patients) who suffer conditions that are not dignified by the presence of what we call disease (Journal of Psychosomatic Research 2002:52:6:437-438).
In his inaugural lecture for his Personal Chair in Psychological Medicine and Symptoms Research (The Science of the Art of Medicine, University of Edinburgh, 12th May 2005), Professor Sharpe spoke on functional medicine and on how to treat diseases with no pathology such as ME/CFS, an insupportable assertion, given the extensive evidence-base of serious pathology shown to exist in ME/CFS.
Professor Sharpe is a member of the DSM-5 study group that is redefining somatoform disorders, with the creation of a new category of Complex Somatic Symptom Disorder (CSSD). The existing evidence suggests that the DSM Somatic Symptom Disorder Work Group intends to ensure that ME/CFS will fall within the purview of the new category of CSSD because Sharpe et al believe ME/CFS to be an example of a CSSD (ie. they believe that ME/CFS patients complain of physical symptoms that do not result from underlying physical disease but are the consequence of abnormal illness beliefs, and that the abnormal beliefs are responsible for the perpetuation of the perceived disability).
Principal Investigator Professor
Trudie Chalders beliefs about CFS/ME are unambiguous: in 2007 the Institute of Psychiatry funded a project called Emotional Processing in Psychosomatic Disorders. The Section of General Hospital Psychiatry at the IoP advertised for a psychology graduate to work on the project, which would involve working across the Section on Eating Disorders and the Chronic Fatigue Research and Treatment Unit. The job reference was 07/R68. The advertisement said: The post holder will work under the immediate supervision of Professors Ulrike Schmidt (AN) and Trudie Chalder (CFS).
The study literature stated: The comparison with CFS will allow (researchers) to gauge whether any social cognition deficits are unique to anorexia, or reflect more global symptoms of psychiatric illness with marked physical symptoms. Thus, according to one of the MRC PACE Trial Principal Investigators, CFS is a psychiatric illness with marked physical symptoms. Applicants were informed that: Anorexia Nervosa (AN) and chronic fatigue syndrome (CFS) are classical psychosomatic disorders where response to social threat is expressed somatically.
Although not a Principal Investigator, psychiatrist Professor
Simon Wessely was Director of the PACE Clinical Trial Unit and directed the centre statistician.
In the late 1980s, Wessely was involved with an organisation now called HealthWatch (which used to be called The Campaign Against Health Fraud). In its own literature, the Campaign stated that its aims were to opposeunnecessary treatment for non-existent diseases. Wessely was listed as a leading member of the campaign and it is the case that he asserts ME is a non-existent disease.
In February April 2002, the BMJ ran a poll of what readers considered non-diseases in which Wessely was instrumental; it concluded that ME, along with big ears and freckles, was a non-disease that is best left medically untreated (BMJ 2002:324:883-885).
Wessely is renowned for his deeply-held belief that ME does not exist; he believes that ME is a behavioural disorder and that patients ascription of the disease to a virus is somatisation par excellence (J Psychosom Res 1994:38:2:89-98).
Professor Wesselys published views about ME/CFS patients include the following:
The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: The average doctor will see they are neurotic and he will often be disgusted with them (Chronic Fatigue and Myalgia Syndromes. In: Psychological Disorders in General Medical Settings Ed: N Sartorius et al. Pub: Hogrefe & Huber, 1990).
In 1992, Professor (then Dr) Simon Wesselys stated intention was to eradicate ME: It seems that ME sufferers prefer to feel that they have a real disease it is better for their self-esteem (and) the label ME helps legitimise their dealings with doctors. Referring to a programme of graded exercise for ME patients, he said there were a very large number of drop-outs from treatment, largely related to the fear these patients had, albeit inappropriately, of accepting that their disorder was all in the mind . Nothing could be clearer: the conference report records that Wessely stated that ME patients fear of accepting that their disorder was all in the mind was inappropriate, indicating that he considers that it is all in the mind (Eradicating myalgic encephalomyelitis (ME). Simon Wessely. Report of meeting held on 15 April 1992 at Belfast Castle; Pfizer Invicta Pharmaceuticals, p4-5).
The inclusion (in ICD-10) of benign myalgic encephalomyelitis as a synonym for postviral fatigue under Diseases of the Nervous System seems to represent an important moral victory for self-help groups in the UKNeurasthenia remains in the Mental and Behavioural Disorders chapter under Other Neurotic DisordersNeurasthenia would readily suffice for ME (Lancet 1993:342:1247-1248).
I will argue that ME is simply a belief, the belief that one has an illness called ME. I will argue that this line here (overhead slide) represents not the line between low and high cortisol responses (but) the line between real and unreal illness (Microbes, Mental Illness, The Media and ME: The Construction of Disease Simon Wessely. 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, London, 12 May 1994).
The term ME may mislead patients into believing they have a serious and specific pathological process (Chronic Fatigue Syndrome. Report of a Joint Working Group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners October 1996 Simon Wessely, Peter White et al).
No investigations should be performed to confirm the diagnosis (ibid).
Other symptoms identified in the chronic fatigue syndrome (include) increased symptom-monitoring (Ann Intern Med 2001:134:9S:838-843). In correspondence arising from this paper, Wessely wrote: I can sleep easy at night when it comes to treatment. I know that we have done more good than harm. All I know is that I am quietly proud of what our group has achieved over the years.
If sections of the media advocate an exclusively organic model, as has happened with CFS, the biomedical model may become firmly enshrined for patients and families at the expense of psychosocial models (Journal of the Royal Society of Medicine 2003:96:223-227).
Functional somatic syndromesinclude chronic fatigue syndrome (Rev Bras Psiquiatr. September 2005:27:3: Sao Paulo).
For more illustrations of what Professors Wessely, White and Sharpe have published about people with ME/CFS over the last 25 years, see:
http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf
