MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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own 1996 Joint Royal College’s Report (CR54) that denied the existence of ME. In his Foreword to the 1994
Task Force Report, Tyrell wrote: “We have no doubt that (ME/CFS) exist(s) and cause suffering and disability. We
discuss the issue of nomenclature at some length for it is not just a semantic problem. It encompasses serious
disagreements, which have sadly led to ill will and abusive remarks on such questions as whether the syndrome exists,
whether it is ‘real’ or ‘organic’ or ‘merely’ psychological…it is important that…administrators, clinicians, scientists,
funding agencies and patients identify the topics in their field on which action is needed…(and) the research
community should be developed and strengthened. But we should be prepared for the long haul”.
It has certainly been “a long haul” because 15 years later, despite approximately 5,000 published mainstream
papers that prove them wrong about the nature of ME/CFS, the Wessely School remains obdurate that
“CFS/ME” is a somatisation disorder.
Lay Statements of concern about flawed studies
As part of the evidence that was obtained for the (unsuccessful) Judicial Review of the NICE Guideline in
February 2009 at the High Court in London, statements from people with ME/CFS about their experiences of
CBT and GET were obtained from 37 lay people.
Of concern is the evidence dated 22 nd September 2008 of DC from Liverpool whose statement about Wessely
School behavioural interventions confirmed:
“I tried GET and from day one I followed the regime religiously. I would get weekly calls from my GET supervisor
who I told exactly what I was experiencing. I never let up once with the incremental increases on the exercise bike and
found that the project supervisor became more and more agitated when after three months I couldn’t get any
improvement from the programme. I pushed myself but found I did not recover. It just got harder and harder but I
was told almost like a mantra that I must carry on, so I did. After three months—and I remember it well ‐‐ I pushed
myself so hard to reach my target that other symptoms started to occur. I told the supervisor, who carried on the with
‘GET rhetoric’…Finally I was referred to the CFS clinic…who informed my supervisor that I should stop…I was
informed that anyone who did not return for the post‐GET assessment was to be considered ‘recovered’. If
this is the case then I feel whatever the results of the survey (they) would be skewed by correlation
assessment not being carried out properly”.
This is an important statement because it confirms that anyone who did not return for post‐GET
assessment (because they may have suffered a serious relapse) was to be considered RECOVERED,
which skews the statistics / data in favour of the alleged efficacy of what is in fact a failed intervention.
If true, that is scientific fraud.
Another statement (from VJ, 13 th October 2008) confirms: “I am a fellow ME sufferer. I have had CBT at King’s
Hospital in London which neither helped nor made me worse. However, I did approach my GP and Consultant at the
Chronic Fatigue Unit about getting the battery of tests recommended under the Canadian Guidelines and was fudged
each time as to why they would not go through with these. I was told I fitted the Oxford criteria and that would
be enough when dealing with permanent health insurers and the DWP, and also that the Canadian
Guidelines tests were not tests they saw any reason to do on ME sufferers”.
Definitions of Cognitive Behaviour Therapy and Graded Exercise Therapy as used in the PACE Trial
Simon Wessely has publicly stated: “CBT is directive – it is not enough to be kind or supportive” (New
Statesman, 1 st May 2008) and the form of CBT used in the PACE Trial is indeed “directive”.
The Trial Identifier says: “CBT will be based on the illness model of fear avoidance. There are three essential
elements: (a) Assessment of illness beliefs and coping strategies, (b) structuring of daily rest, sleep and activity, with a
graduated return to normal activity, (c) challenging of unhelpful beliefs about symptoms and activity” and that it