SOME QUESTIONS ABOUT ME/CFS TO WHICH CREDIBLE ANSWERS ARE URGENTLY REQUIRED

22nd March 2004

(prepared for The Countess of Mar’s various meetings with MRC, MPs and Ministers in March /April 2004 by Professor M Hooper in collaboration with the ME/CFS community)

 

Summary of Key Issues:

 

 

 

The CMO’s Working Group on “CFS/ME”

 

 

 

(i)                  Dr Charles Shepherd and Professor Simon Wessely’s membership of HealthWatch, with all the attendant HealthWatch anti-ME / anti-alternative + complementary medicine baggage --- since the late 1980s HealthWatch has carried out a sustained and vicious attack on ME patients, most publicly and notably by its activists Caroline Richmond (a journalist) and, even more vitriolically, by Dr Michael Fitzpartick, its medical writer who also writes for “spiked” (an on-line publication), who is known for his publications in which he attacked the CMO for taking ME seriously, claiming that the CMO’s stance is “a surrender of medical authority to irrationality”.  Charles Shepherd is a self-proclaimed “active” member of HealthWatch and has published many articles against alternative and complementary medicine.  This is relevant because the CMO’s report was supposedly looking at all management approaches, including alternative and complementary approaches, which are the very approaches that HealthWatch was set up to oppose:  it now denies this, but its early documents are unequivocal.

 

(ii)                Deputy Chair of the CMO’s Working Group Professor Tony Pinching’s membership of the RCP committee that produced a fiercely anti-allergy / anti-alternative + complementary medicine report (that report had to be withdrawn because Fellows of the College exposed it as being wildly inaccurate), and his disparaging views on “CFS” as expressed in Prescribers’ Journal 2000:40:2:99-106 (published during his tenure as Deputy Chair of the CMO’s Working Group), including his view that “CFS” patients “seek abnormal test results to validate their illness” and that  “the essence of treatment is activity management and graded exercise”.  Such views are not supported by the evidence.

 

(iii)               Wessely’s personal involvement with PRISMA, a healthcare company working with insurance companies to arrange “rehabilitation programmes” of cognitive behavioural therapy and graded exercise for those with “CFS/ME” and which is now providing such regimes for the NHS (Wessely is listed a Corporate Officer and as a member of the Supervisory Board and is higher than the Board of Management).  This is the same package which, via the York Centre for Reviews and Dissemination (CRD) Systematic Review  underpins the recommendations of the CMO’s “independent” Report.   Wessely was an adviser to the team which carried out that systematic review of the literature, so once again, undeclared vested interests are rampant.

 

(iv)              The Linbury Trust (ie. Lord (David) Sainsbury of Turville’s family trust) partly funded the CMO’s Working Group and is well-known for its stance on “CFS”: since 1991 Linbury has been the major source of funding for Wessely et al’s “chronic fatigue” studies which they inaccurately equate with ME/CFS. Linbury’s relationship to the Government Science Minister Lord David Sainsbury (who has given £11 million to the Labour Party and who controls all the Research Councils, including the MRC and whose personal biotech companies have received much attention lately over the issue of GM technology) is an undeniable competing interest.  Linbury’s published view is that its management approaches for “CFS” deal only with graded exercise, CBT and anti-depressants.  How could the CMO’s Working Group Report not reflect this particular vested interest?

 

(v)                The use by the Centre for Reviews and Dissemination (which carried out the so-called “independent” York Review of the literature) of Wessely’s own database as a basis for their study of the literature.   Professor Iain Chalmers, Director of the Cochrane Collaboration, whose “unbiased” databases were  also used for the “systematic review” of the literature for the CMO’s Working Group is, with Wessely and Shepherd, a member of HealthWatch.  Inevitably, the CRD / York Systematic Review found that CBT and graded exercise were the best management approaches, but where is the proof that ME/CFS  (as distinct from “chronic fatigue”) is amenable to CBT?  It is certainly not in the York Systematic Review, so why is CBT still being pushed as the management of choice by both the MRC and by NICE, and why has Government granted £8.5 million for yet more studies by these same psychiatrists on something that has already been shown to be harmful to those with ME/CFS?

 

(vi)              The long-time and well-documented involvement of Wessely School psychiatrists with the disability insurance industry in respect of ME/CFS claims (especially Wessely himself, Peter White and Anthony Cleare ---  for detailed information, see “Further reading”).  The media has now picked up the key issue, namely that “its all about selling the idea of a disorder – the idea of mental illness –in order to get more funding. The whole business of creating psychiatric categories of ‘disease’, formalising them with consensus, and subsequently ascribing codes to them, which in turn leads to their use for insurance billing, is nothing but an extended racket. The perpetrators are, of course, feeding at the public trough”  (Westminster Independent, 1st March 2004, The Citizens Commission on Human Rights)

 

 

 

 

 

 

 

 

The MRC

 

 

 

 

 

 

 

The National Institute for Clinical Excellence  (NICE)

 

 

 

 

The UK WHO Collaborating Centre “Guide to Mental Health in Primary Care”

 

 

 

 

·        In the light of the letter from the Health Minister referred to above, what active steps is Government taking to correct the anomaly in the Guide whereby an ICD code of G93.3 is assigned by the UK Collaborating Centre to “CFS and Somatoform” disorders in children and adolescents, and why has the term CFS/ME not been used with regard to children here?  http://www.whoguidemhpcuk.org/page_view.asp?c=16&did=2279&fc=021

 

·        Why in the Guide is Chronic Fatigue Syndrome (by which ME is also known, as confirmed by the Health Minister) incorrectly described synonymously with “chronic fatigue”?  http://www.whoguidemhpcuk.org/content_show.asp?c=16&fid=1252&fc=011065

            http://www.whoguidemhpcuk.org/content_show.asp?c=16&fid=895&fc=005027

 

·        In the second edition of the UK “Guide”, there is still more misinformation: the “Guide” states that there is up to 96% overlap between ME and neurasthenia.  This assertion is supported by a single reference that is now almost a decade old and is taken from a paper entitled  “Neurasthenia Revisited:  ICD-10 and DSM-III-R Psychiatric Syndromes in Chronic Fatigue Patients and Comparison Subjects”  (Farmer A et al; British Journal of Psychiatry 1995:167:503-506).  Not only does the title refer to “chronic fatigue” patients (who differ from those with ME/CFS) whilst the text refers to patients with “chronic fatigue syndrome”, but the paper explicitly state: “97% (sic) CFS subjects fulfilled criteria for neurasthenia (F48) if exclusion criteria were ignored.  When the exclusion criteria were applied 40% of CFS subjects fulfilled criteria for CFS”.  If exclusion criteria are ignored, the research and conclusions are meaningless.  The unequivocal statement in the “Guide” that there is up to 96% overlap of symptoms between  “ ‘fatigue syndrome’, both chronic and not” and neurasthenia is patently untrue.  What is the justification for such a misleading entry in a new edition of the “Guide” funded by the UK Department of Health, and what active steps is Government taking to correct this blatant misinformation?

 

 

 

Suggested Further Reading 

 

(all available from the Countess of Mar, House of Lords, London SW1A  0PW)

 

The following documents are all fully referenced and set out in detail what has been happening to the UK ME/CFS community since Simon Wessely came to prominence in 1987.

 

The Mental Health Movement: Persecution of Patients?  A Consideration of the Role of Professor Simon Wessely and Other Members of the “Wessely School” in the Perception of Myalgic Encephalomyelitis (ME) in the UK.   Professor Malcolm Hooper et al  December 2003

 

Notes on the involvement of Wessely et al with the Insurance Industry and how they deal with ME/CFS claims.  June 2003

 

What is ME? What is CFS?  Information for Clinicians and Lawyers   EP Marshall,

M Williams, M Hooper  December 2001

 

Consideration of Some Issues Relating to the Published Views of Psychiatrists of the “Wessely School” in relation to their belief about the nature, cause and treatment of Myalgic Encephalomyelitis   March 2000

 

Denigration by Design?  A Review, with References, of the Role of Dr Simon Wessely in the Perception of Myalgic Encephalomyelitis  Volume I (1987-1996)  and Volume II (1996-1999)   pp488