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

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defining feature of ME/CFS (the defining feature of ME/CFS being post‐exertional muscle fatigability
with malaise).
Of concern is the fact that the authors stated: “The aim was to show patients that activity could be
increased steadily and safely without exacerbating symptoms”. That is a remarkable statement. It
demonstrates that the authors had decided ‐‐ in advance of the outcome ‐‐ that activity could be increased
without exacerbating symptoms. This was not merely the authors’ hypothesis: that this would be the
outcome was taken for granted.
Of note is the fact that the outcome did not meet the authors’ certainty, and the authors had to concede that:
“cognitive behaviour therapy was not uniformly effective: a proportion of patients remained fatigued and
symptomatic”. Perhaps for this reason, the presentation of results was mostly reported as averages, rather
than giving actual numbers of patients. The authors acknowledged that: “The data from all the outcome
measures were skewed and not normally distributed, with varying distributions at each measurement point”. In such
circumstances, merely providing “average” figures is not the most appropriate illustration of findings. In
summary, this RCT has little relevance in general and none whatever to people with ME/CFS.
Burgess and Chalder’s informing members of the public who bought their book that the trials they cited
were double blind when they were not even single blind, and their reliance on studies that were shown to be
flawed, demonstrates a worrying and evident failure to understand the most elementary tenets of the
scientific process.
These same people are, however, the authors of the MRC PACE Trial Manuals on CBT for both
therapists and participants, which sadly are also replete with misinformation.
There are seven Manuals for the PACE Trial; these are:
The Therapists’ Manual for Cognitive Behaviour Therapy (CBT) is written by Mary Burgess and Trudie
Chalder. It is entitled: “Manual for Therapists. Cognitive Behaviour Therapy for CFS/ME”.
Acknowledgements are made to Jessica Bavinton, Diane Cox, Vincent Deary, Michael Sharpe, Bella
Stensnas, Sue Wilkins, Giselle Withers and Peter White.
The Therapists’ Manual for Graded Exercise Therapy (GET) is written by Jessica Bavinton, Lucy
Darbishire and Peter White and is entitled “Manual for Therapists. Graded Exercise Therapy for CFS/ME”.
(Dr Lucy Darbishire – now Dr Lucy Clark – an exercise scientist from King’s College, London, believes that
CFS is “just another end of the spectrum [of fatigue]” – Brit J Gen Practice 2003:53:441‐445). She is not to be
confused with Professor Janet Darbyshire, Chair of the PACE Trial Steering Committee.
Acknowledgements are made, amongst others, to Mary Burgess, Diane Cox, Trudie Chalder, Kathy Fulcher,
Gabrielle Murphy, Pauline Powell and Michael Sharpe. Contributions from (un‐named) members of the
Trial Steering Committee, the Data Monitoring and Ethics Committee and the Trial Management Group are
also acknowledged.
The Therapists’ Manual for Adaptive Pacing Therapy is entitled “Adaptive Pacing Therapy (APT) for
CFS/ME” and is written by Diane Cox, Sally Ludlum, Louise Mason, Sally Wagner and Michael Sharpe.
Acknowledgements for their invaluable contribution are made to Mary Burgess, Jessica Bavinton, Vincent
Deary, Trudie Chalder and Peter White.