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

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maximised by the collaboration and support of AfME”. “Compliance” and “collaboration” are strong words
and they may indicate just how influential was the involvement of AfME in the PACE Trial.
In section 6 (“Application History”) the Trial Identifier states at 6.1:
“A similar application of a much smaller two arm trial (FATIMA; Grant number G9825745) was submitted in full to
the MRC in 1999, rated Alpha B, but not funded.
“The outline proposal of this study (G010039) was approved for a full proposal in October 2001. The major
innovations in this application include close collaboration with Action for ME”.
This statement by Peter White indicates that the PACE Trial might not have been funded without the
“collaboration” of Action for ME.
By letter dated 6 th December 2004 to the West Midlands MREC, Peter White confirmed the involvement of
AfME in the PACE Trial Manuals (see Section 4 below): “The treatment manuals have been developed with the
active involvement of the main patient charity, Action for M.E”. This was a somewhat misleading statement, as
the main UK ME charity is the ME Association which has been in existence since the 1970s, whereas AfME
was not founded until March 1987.
It is noteworthy that Action for ME, a charity that was set up by ME sufferer Sue Findley as a self‐help
group for people with ME, has been so influential in supporting and working on a trial that assumes
membership of a self‐help group to be a predictor of a poor outcome to treatment (Trial Identifier,
section 2.3) and with a trial whose Investigators believe AfME’s members to be mentally ill.
AfME’s members might wish to consider why a charity that was formed to support people with ME
should now work so closely in the PACE Trial with those who choose to deny that ME even exists,
including the attendees at the Malingering and Illness Deception Meeting in Woodstock, near Oxford,
on 6 th – 8 th November 2001 (see Section I above).
AfME’s Principal Medical Advisor has been Professor Pinching (it is understood that he planned to stand
down in December 2009). Pinching is well‐known for his published view that the Oxford criteria are
“probably too narrow” (most clinicians specialising in ME/CFS think they are too broad, as they specifically
include people with psychiatric fatigue); that over investigation can be “counterproductive to the management
of these patients…. causing them to seek abnormal test results to validate their illness”; that approaches to symptom
control “can be behavioural or pharmacological” and that “The essence of treatment is activity management and
graded rehabilitation” (Prescribers’ Journal 2000:40:2:99‐106).
As noted in Section 1 above, Pinching is lead advisor to the DoH on “CFS/ME”; he was Chairman of the
Investment Steering Group that devised the process and criteria for setting up the 12 “CFS” Clinics
throughout the country that are led by “clinical champions”; he oversaw the assessment of bids and
allocated the funds (£8.5 million). A further 28 local support teams were set up to provide “training resources
for health professionals” and to provide “specialist assessment” and advice on how to overcome “too much focus
on normal bodily sensations, personality traits, avoidance behaviour and learned helplessness” (Environmental
Issues Forum: Spring /Summer 2004:14‐17).
These “CFS” Clinics have been extensively criticised by ME/CFS patients (see www.erythos.com/RiME).
The Wessely School views about “CFS/ME” patients have been crystallised into a Wessely School “CFS
profile” as formulated by at least two of the Government‐funded “CFS” centres in their job descriptions for
candidates who are to deal with “the undeserving sick”, as PACE Trial Principal Investigator Michael Sharpe
refers to them (Lecture given at the University of Strathclyde, October 1999; transcript available). Those
advertisements were placed by Liverpool and Broadgreen University Hospitals NHS Trust (reference 2570;