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

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Page 66 provides quotations from the AfME 2003 Report: “A number of quotes to assist with explanation of
‘increasing as able’ “.
Page 67 is another blank record sheet entitled “Energy Requirements”.
Page 68 is a blank record “(Baseline Sheet”). Participants are asked: “What would be your own baseline at
present?” (the identical question was previously asked on page 15 of the Manual).
Page 69 is filled with a repeat of the incomprehensible diagram on page 9.
Page 70 is headed “APT Review”.
Page 71 is a section entitled “Partners, Relatives and Friends Information”.
Page 72 is entirely blank.
This Manual is woefully inadequate.
It is difficult to see how any of the participants would have found anything of real value in it to help them
deal with a complex and life‐wrecking disease.
The type of pacing universally reported by patients to be helpful is simple: listen to your body and do not
push yourself.
It can be adequately explained to someone in five minutes and cannot be described as a “therapy”.
Adaptive (or “Adapted”) Pacing Therapy appears to be an attempt to take this simple notion and stretch it
sufficiently to fill a “Manual” for an MRC clinical trial.
The result is a deeply patronising and carelessly written document that is almost entirely devoid of
meaningful content.
The authors have filled the pages with a repetitive collection of truisms, tautology, folk wisdom and
cartoons.
The PACE Trial Protocol records that the patient charity Action for ME “helped in the design of the APT
Manual and have endorsed this version of pacing”.
Members of AfME and the wider ME community may well question the value of AfME’s contribution.
It is incomprehensible how such a document received approval from any Ethics Committees as a “therapy”
in an MRC clinical trial.