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

Quotations from the Therapists’ Manual on APT
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Of all the PACE Trial Manuals, this 183 page Manual seems to be the most poorly‐conceived and ill‐written.
In his reply to comments about the published (abridged) Trial Protocol, Professor Peter White stated about
the APT Manuals: “The manuals were developed in conjunction with and fully approved by the patient charities
Action for ME and Westcare (before they merged)” (http://www.biomedcentral.com/1471‐2377/7/6/comments ).
The Investigators claim that APT has been used in response to patient feedback and support from various
groups, but APT is not “pacing”; there is no description of APT in the public domain, so the claim that it
was included because patients find it helpful is difficult to understand (Co‐Cure RES: 4 th February 2010).
The PACE Trial Investigators’ unfavourable views about pacing were already known. In 2002, the same year
that Peter White applied to the MRC for funding for the PACE Trial, commenting on the Chief Medical
Officer’s Working Group Report on CFS/ME and acknowledging the input from Professor Michael Sharpe,
he wrote about pacing: “Some clinicians could not agree to recommend ‘pacing’ on the basis of patient group
experience alone, without any evidence of efficacy….The English report’s recommendation omitted any suggestion that
CBT and GET should be more readily available; something that would have been helpful since the unavailability of
these treatments is the real issue in this country…These recommendations were obfuscated by equally promoting
‘pacing’, in spite of the lack of research evidence for its efficacy…The one clear difference between pacing and the
more active CBT and GET is that activity levels are limited by symptoms in pacing….The theoretical risk
of pacing is that the patient remains trapped by their symptoms in the envelope of ill‐health” (Editorial:
Postgrad Med J. 2002:78:445‐446).
The published (abridged) Trial Protocol states about pacing that it: “may reduce symptoms, but at the
expense of not reducing disability” (BMC Neurology 2007: http://www.biomedcentral.com/1471‐2377/7/6).
The Therapists’ Manuals, however, state that all the interventions used in the PACE Trial may be considered
forms of pacing ‐‐ as mentioned above, the “Summary of Therapies” in the Manuals for Therapists and in
the SSMC Manual describes APT as “simple, non‐incremental pacing”; CBT as “complex incremental pacing”,
and GET as “simple incremental pacing”. Furthermore, the Full Protocol (final version) states: “All the
participating clinicians regard all the four treatments as potentially effective”, which contradicts Professor White’s
own views about pacing.
The Minutes of the Trial Steering Group meeting held on 27 th September 2004 record that Professor Jenny
Butler (an occupational therapist) “expressed concern that the APT manual appeared to be considerably smaller
than those for CBT and GET. Recommendations including copying the format of the GET manual for information on
engaging the patient, the initial assessment and troubleshooting such as ‘what to do if your therapist is on holiday’
(sic). It was stated that APT should have equal face validity to the other therapies and because this was a new
treatment and one advocated by patient groups, it was important to make this treatment of equal quality”. Action 31
in the Minutes records: “Professor Sharpe to lead Diane Cox in making the recommended alterations to the APT
manual”.
The authors of the APT Therapists’ Manual obviously listened to Professor Butler; they increased its size by
the use of:
• repetition
• repetition of the repetition (using many almost identical quotes from an AfME survey)
• what appears to be obvious “padding” by using superfluous explanations of elementary concepts
• extraordinarily large font sizes
• pages containing only one or two sentences
• large diagrams as apparent space fillers.
By trying to turn what is common‐sense (ie. the avoidance of over‐exertion) into a “therapy” (ie. APT) and
by providing a “Manual” for this “therapy” (a Manual which amounts to little more than a collection of