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

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Standardised Specialist Medical Care or “SSMC”); apart from the latter, there are also respective versions for
participants.
It is notable that the West Midlands Multicentre Research Ethics Committee’s letter of 29 th October 2002
confirming approval of Peter White’s application for ethical approval states: “MREC noted the importance of
the study and wished to commend the researchers on the RCT design” (random controlled trial), an unusual
commendation which seems to show bias from the outset and may indicate the MREC’s ignorance of the
issues that lie at the heart of the international disquiet surrounding the MRC PACE Trial.
Every effort has been made to view objectively the PACE Trial information that informs these comments.
However, the information must be assessed in the light of the significant body of evidence that ME/CFS is
not a behavioural disorder; moreover the quotations from the Manuals speak for themselves.
Although every Manual states that it is copyright and that no part may be reproduced without permission,
the Information Commissioner’s Office has confirmed that if documents are released under the Freedom of
Information Act, they enter the public domain and can be used by members of the public and not only by
the person who made the application.
It is the case that the MRC was not happy that so much of what it regarded as confidential information
about the PACE Trial has been released. A letter dated 14 th February 2008 from the Information
Commissioner’s Office to the person who made the FOIA application states: “The MRC has expressed its
concern over how you came to be in possession (of this information)”.
Given the nature of that information, the MRC’s concern may well be justified.
The difference between ME/CFS and “CFS/ME”
What the Wessely School refers to “CFS/ME” is, according to them, a condition of “medically unexplained”
fatigue that is perpetuated by inappropriate illness beliefs, pervasive inactivity, current membership of a
self‐help group and being in receipt of disability benefits (PACE Trial Identifier, section 3.9) and it should be
managed by behavioural interventions (CBT and GET). Simon Wessely believes that it is the same as
neurasthenia: “Neurasthenia would readily suffice for ME” (Lancet 1993:342:1247‐1248) and that attribution by
patients to a virus is somatisation “par excellence” (J Psychosom Res 1994:38:2:89‐98). The Wessely School
believes that there are no physical signs of disease and assert that there is no pathology causing the patients’
symptoms, simply that patients are “hypervigilant” to “normal bodily sensations” (see below).
Seemingly because of the Wessely School’s beliefs, children with ME/CFS have been diagnosed as having
“pervasive refusal syndrome” and many have been forcibly removed from their distraught parents (see
below), who themselves have been labelled as having Munchausen’s Syndrome by Proxy, a damaging label
that is never deleted from their medical records.
Whilst Wessely School psychiatrists continue to believe and teach (and advise Government agencies) that
“CFS/ME” is a behavioural disorder that must be managed by behavioural interventions and incremental
aerobic exercise (and which two of the PIs assert can be “cured” by those interventions), in reality true
ME/CFS affects every system in the body and many physiological abnormalities have been documented.
At the Press Briefing held on 3 rd November 2006 by the US Centres for Disease Control to announce its
ME/CFS awareness campaign, two eminent professors who specialise in ME/CFS spoke on public record
about the nature of ME/CFS. Anthony Komaroff, Professor of Medicine, Harvard Medical School, said:
“It’s a pleasure to be here today with several people who have dedicated successfully a big part of their
lives to trying to understand and get recognition for this terrible illness.