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

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closing date 31 st January 2005) and Epsom and St Helier NHS Trust (reference HJUK/ZP/238; closing date
18 th March 2005) and caused justifiable offence:
“CFS” patients are said to exhibit “perpetuating illness behaviour”; therapists will be required to modify
patients’ “predisposing personality style”; CFS patients have “complex psychological problems” and “experience
barriers to understanding”; there can be ʺsignificant barriers to accepting the changes needed in behaviour, which
have to be overcome in therapy”; therapists can be required to work frequently in an emotive and demanding
environment and patients may be “verbally aggressive”; “medical intervention is no longer appropriate”; the
aim of therapy is to “reduce healthcare usage”; the service is extended to patients who have mental health
problems; the post‐holder is expected to “implement a range of psychological interventions with individuals,
couples and families” and to work with other members of the multi‐disciplinary team to “raise awareness of the
approach adopted by the new centres to GPs and other local service providers”.
It seems that the objective was to portray throughout the UK the Wessely School’s “CFS profile” and its
intended psychiatric management of such patients.
In an article in The Observer in April 2007, AfME’s Principal Medical Advisor Professor Pinching wrote:
“There is a ‘tool box’ available to clinicians to address things that may be interfering with recovery – eg. low self‐esteem
and depression. Your GP can discuss options available to you, which include cognitive behavioural therapy”.
There is no evidence to show that “low self esteem” either occurs in ME/CFS or interferes with recovery, but
there is evidence to show that rates of depression are no higher in ME/CFS than in other chronic medical
conditions (Shanks MF and Ho‐Yen DO, British Journal of Psychiatry 1995:166:798‐801); indeed, the rates of
overall psychiatric disorders in ME/CFS are no higher than general community estimates (Hickie I et al.
British Journal of Psychiatry 1990:156:534‐540).
It is not only Professor Pinching who is closely involved with Action for ME: Professor Michael Sharpe is
(or was) an ad hoc Medical Advisor to the charity, and on 22nd January 2004 in a debate on ME/CFS in the
House of Lords, the Health Minister, Lord Warner, confirmed that Professor Wessely had worked closely
with Action for ME, to which the Countess of Mar responded: “Such is that man’s influence that when faced
with ME patients, clinicians now collude with each other to ensure that patients receive no investigation, support,
treatment, benefits or care – in fact, nothing at all. Patients are effectively abandoned. They have been badly let
down by Action for ME. It is now supporting the Wessely ‘management’ programme and is, I see, to be actively
involved in the development of the new treatment centres” (Hansard: Lords: 22 nd January 2004:656:27:1180).
On what grounds the charity AfME chose to be so closely involved in the PACE trial of GET when its own
Preliminary Report of 2001 (published as “Severely Neglected: M.E. in the UK”) shows that GET makes 50%
of ME patients worse remains to be ascertained.
If it were already known that a drug made 50% of patients worse, would a clinical trial of that drug be
permitted to continue, and would people be willing to take part in such a trial?
One PACE Trial participant, herself a mental health professional, has posted her experiences on the internet
and has expressed her dismay about the involvement of Action for ME:
“I am most disappointed that AfME has endorsed the PACE Trial.
“ I was randomly selected to CBT via the trial, and it was quite apparent that the treatment was flawed from the outset:
a) The therapist misled me by saying he had a 99% recovery rate
b) He could not answer basic questions as to how he measured recovery