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

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• “It should be kept in mind that evidence from randomised controlled trials bears no guarantee for treatment
success in routine practice. In fact, many CFS patients, in specialised treatment centres and the
wider world, do not benefit from these interventions” (Huibers and Wessely. Psychological
Medicine 2006:36:(7):895‐900).
The Reno 2009 IACFSME conference was summarised by Professor Charles Lapp, Medical Director of the
Hunter‐Hopkins Centre, P.A. Charlotte, North Carolina, who recorded: “Cognitive Behavioural Therapy is not
as helpful as once thought” (http://www.drlapp.net/news.htm).
The PACE Trial Manuals, however, make it clear that there is no underlying disease process and that the
perceived disease is reversible by the behavioural therapy used in the PACE Trial.
The PACE Trial message is that exercise prevents various diseases, not just “CFS/ME”: the GET Manual for
therapists states on page 24: “As well as direct impact upon CFS/ME, exercise has also been shown to have a strong
role in the prevention of various diseases such as coronary heart disease, stroke, cancer, and type II diabetes, as well as
reducing the risk of premature death by 20‐30%”.
So in one section, the authors of the PACE Trial Manuals state that GET is “preventative” for “CFS/ME”, but
then the Manuals warn therapists that they may be treating sportspeople who are used to exercising, and
that these people may be problematic to deal with in that they may wish to over‐exercise. If exercise (and
especially GET as claimed) is “preventative”, why have people who have exercised succumbed to the
disorder? Such illogical statements pervade the Manuals.
The Trial Manuals are replete with other internal inconsistencies and contradictions.
For example, one of the arms of the Trial (pacing) is believed to be anathema to the Chief Investigator,
Professor Peter White. This may be because the need for pacing implies an underlying pathological process,
a concept that militates against his belief that ME/CFS is a behavioural disorder.
In 2002, the same year that he applied for funding for the PACE Trial, Professor White explained why he
and some of his like‐minded colleagues resigned from the Chief Medical Officer’s Working Group that
reported on “CFS/ME” in 2002: “some clinicians could not agree to recommend ‘pacing’ on the basis of patient
group experience alone…..some clinicians believed that the report over‐emphasised the severity and chronicity of CFS
to the extent of suggesting that recovery was unlikely, when the evidence shows that not to be true. The report’s
recommendation omitted any suggestion that cognitive behaviour therapy and graded exercise therapy should be more
readily available. These recommendations were obfuscated by equally promoting ’pacing’. The theoretical risk of
pacing is that the patient remains trapped by their symptoms in the envelope of ill‐health” (Postgraduate
Medical Journal 2002:78:445‐446).
However, in his PACE Trial Protocol (2006 version), Professor White states: “All the participating clinicians
regard all the four treatments (including pacing) as potentially effective”, which contradicts his published views.
In relation to APT, the PACE Trial literature informs participants that Adaptive Pacing Therapy (APT) is
“strongly” recommended by the patients’ charities, but on searching the Action for ME website for either
“adaptive pacing therapy” or “APT”, neither term comes up.
To misinform participants in such a manner is surely unacceptable, but misleading material occurs
throughout the PACE Trial literature.
Notably, whilst therapists are trained to “psych‐up” patients on the CBT and GET arms of the Trial for their
triumphant return to work, patients on the APT arm of the Trial are not to be “psyched‐up” to return to
work.