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

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anecdotes taken from AfME surveys), in their “Models of Treatment” the authors refer to the literature on
pain in an attempt to make it sound as if there is an established “scientific” explanation that underpins
“pacing” (ie. not just patients’ preference).
This has been shown not to be the case: “It is evident from this review that ‘pacing’, while a widely employed term,
lacks consensus of defintion and a demonstrable evidence‐base” (Gill JR et al; Eur J Pain 2009:13(2):214‐216).
It is a matter of record that one of the authors of the Manual (Professor Michael Sharpe) does not believe in
pacing, so it is unclear what he contributed to a Manual on a subject in which he does not believe; equally,
acknowledgement is made to Peter White for his invaluable contribution but, given his known antipathy to
pacing, it is difficult to understand what his invaluable contribution could have been.
As with other Manuals, this Manual has coloured pages: pink sheets divide it into the three phases of
“treatment” and yellow sheets are the sessions plans and content for each of the 15 sessions of “treatment”.
The authors advise the therapists that “the space between the list of handouts is an indication of which might be
used during the session and those that the participant will use at home”, which seems to be little other than an
attempt to increase the size of the Manual.
There is the inevitable overlap with the other Manuals for Therapists, for example, APT therapists are told
that CFS, PVFS and ME are to be considered as “CFS/ME”; that the essence of SSMC is good quality medical
care, and that APT is widely used and is advocated for patients with fatigue. The Investigators’ “theoretical
model” is described, as is the definition of CBT and GET used in the PACE Trial.
Page 18 of the APT Therapists’ Manual is identical to page 28 of the CBT Therapists’ Manual, but with one
notable difference: APT does not “Aim for an improvement in function to occur”.
Therapists – who are occupational therapists ‐‐ are told that all sessions will be taped and that “Relaxation
sessions may also be taped”.
It is notable that in his 2006 Comments on Chapter 6 (page 301) of the NICE draft Guideline, (ie. during the
lifetime of the PACE Trial), Professor Peter White stated his views about relaxation: “…this technique has
often been used as the main component of ineffective comparison treatment arms in several RCTS….Why,
therefore, is an ineffective therapy included? We suggest this is omitted….”.
It may be wondered why Professor White had by then received millions of pounds sterling to carry out an
MRC clinical trial that includes what he himself asserts is “an ineffective therapy”. The APT Therapists’
Manual (to which Professor White made an invaluable contribution), however, states: “Pacing therefore
involves practising relaxation to achieve proper rest…. Homework: Planned relaxation and activity set at an
achievable level, practised regularly and consistently…”.
APT Therapists are told: “The aim is to provide the best conditions for natural recovery to occur. A lessening of
activity‐related symptoms is regarded as evidence of recovery which may permit an increase in activity” and that “The
pacing therapy used in this trial is based on that reported as useful by people with CFS/ME and collated by the patient
organisation Action for ME (AfME 2002, 2003)”.
The key words appear to be “based on” the pacing reported as useful by people with “CFS/ME” because it
appears that “APT” is different from the pacing reported as useful: APT is “adaptive” pacing, which is
substantially different from “pacing”.
As noted above in the introduction to Section 4 of this Report: “Activity is therefore planned”, which indicates
a structured activity/rest regime, and the APT Therapists’ Manual lists requirements for APT including
“plan set activity in advance” (so activity must be “set activity”, not simply what the patient may be capable of