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

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selectivity seems not to accord with the advertisement for the PACE Trial that was sent to GPs, which states
that 600 patients “will be recruited from consecutive new patients attending specialist chronic fatigue and
CFS/ME clinics with a diagnosis of CFS/ME made according to the Oxford research diagnostic criteria” (this was
changed during the life of the Trial).
Furthermore, how can the results of an intervention in any trial be “evidence‐based” for efficacy in a
disorder when those most severely affected by that disorder are excluded from the outset?
Key people involved with the PACE Trial are known to be “contentious”
As noted above, the three Principal Investigators are Professors Peter White, Michael Sharpe and Trudie
Chalder. The PACE Clinical Trial Unit (CTU) is directed by Professor Simon Wessely, who is a member of
the Trial Management Group.
It is these people themselves who foster the idea that ME/CFS is “contentious”—the World Health
Organisation is not similarly vexed by the nosological status of ME/CFS.
The Institute of Psychiatry’s “Your Mental Health” website says on page 18 about “Chronic fatigue
syndrome/ME”:
“Developing and testing sometimes controversial treatment programmes: treatment programmes for CFS/ME have
attracted controversy over the years…One of the collaborators in PACE is the Chronic Fatigue (sic)
Research and Treatment Unit based at the IoP…and headed by Professor Trudie Chalder, who says she
thinks people’s beliefs may have an important part to play in the recovery process…’Beliefs and attitudes
towards illness are important in many conditions’, she said.’Shifting beliefs that may make recovery more
difficult is one of the arms of the cognitive behaviour therapy used within the Unit’ ”
(http://www.iop.kcl.ac.uk/iopweb/blob/downloads/locator/l_26_research_report_2008.pdf).
It is notable that documents released under the FOIA provide evidence that the original “Manual of
cognitive‐behavioural treatment for CFS” dated 19 th June 2002 for the PACE Trial was authored by Chalder
T, Deale A, Sharpe M and Wessely S. It is further noted that, due to the contention surrounding him,
Wessely’s name was subsequently removed from authorship, possibly to avoid anticipated difficulties with
recruitment, given his indisputable reputation and the evidence of his disbelief in the existence of ME.
Indeed, the Minutes of the APPGME held on 17 th May 2007 record that Dr Ira Madan (Director of the
NHSPlus Guideline on the “Occupational Aspects of the Management of CFS”) informed MPs that she and
her group “deliberately chose not to approach Professor Simon Wessely because they realised his
appointment would be contentious”.
The contentious beliefs of Professors Wessely, Sharpe and White about ME/CFS patients speak for
themselves (see Section I above and also http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf ).
The involvement of the charity Action for ME in the PACE Trial
Of note is the fact that the PACE trial was designed in collaboration with the charity Action for ME (AfME).
The PACE Trial Identifier states: “Mr Chris Clark, CEO of AfME, will be a member of the TMC (Trial
Management Committee) and help with external relations”. (Mr Clark left AfME in 2006 and was replaced by Sir
Peter Spencer). The Identifier also states: “Compliance with both the treatments and the study will be