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

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Therapists are advised that pedometers may be used “where appropriate….you may find that a participant will
be motivated by seeing the distance they are walking daily…and you may choose to use this as an adjunct to GET”.
However, therapists are then told: “it is useful to discourage excessive attention to the figures displayed”.
Having discussed the need for the participants to use an “Exercise Diary”, the authors return on page 63 of
the Manual to the Borg Scale: “It is normal for CFS/ME patients to have higher Rating of Perceived Exertion (RPE)
or Borg Scale number than normal subjects. This may be related to sleep disturbance, deconditioning, enhanced
interoception (increased awareness of body sensation) or mood disturbance”. The reference cited for this statement
is Peter White’s own 1997 study (BMJ 1997:314:1647‐1642). There is no mention that it could be related to
physical disease such as described in Peter White’s own 2004 study: “The pro‐inflammatory TNFα is known to
be a cause of acute sickness behaviour, characterized by reduced activity related to ‘weakness, malaise, listlessness and
inability to concentrate’, symptoms also notable in CFS” (JCFS 2004:12 (2):51‐66).
Therapists are then informed that: “After an exercise programme, research has shown that the RPE (Rating of
Perceived Exertion) in CFS (no mention of ME here) is normalized”, the reference again being Peter White’s
1997 study.
Therapists are told that: “The sense of effort is not a reliable indication of physiological effort in a patient with
CFS/ME. So the HR (heart rate) can replace this”.
In the section in which the therapist is instructed how to carry out testing of the participant’s heart rate, the
instructions say: “Heart rate will be recorded to objectify (sic) effort and fitness at the beginning, end, and at
recovery”, which once again instils into the therapist the idea that “recovery” is possible, an assumption that
is not borne out by the evidence and in any case is the hypothesis that is allegedly being tested in the PACE
Trial.
Therapists are also told that if the participant reports an increase in fatigue as a response to a new level of
exercise, “they should be encouraged to remain at the same level for an extra week or more (this could be potentially
dangerous for people with ME/CFS). They should be reminded that each new level will initially feel harder until the
body adapts” (this is an assumption that the body can adapt, which may not be true for people with ME/CFS).
In the section titled “Strategies for planning exercise”, the therapist is exhorted to use “motivational
techniques…to improve compliance” but such techniques must not involve CBT; therapists are advised that:
“using written reminders and rewards can also be helpful” (are participants being bribed into compliance by the
use of “rewards”?).
Therapists must encourage “participation from partners, family and colleagues (the use of the word “colleagues”
means that the participant must be well enough to be employed). The therapist is advised to “use a
motivational technique known as motivational interviewing: ask the participant ‘What is the likelihood of you
undertaking this plan? (scale 1‐10)’. If it is under 7, it is unlikely that they will do the activity being discussed, so it
will need re‐negotiating”.
In the section “Maintaining exercise”, the therapist must explain that: “in order for the body to continue
strengthening, and for changes to be maintained, exercise should form a regular part of their lives from here onwards.
The long‐term benefits of exercise for the prevention of CFS/ME specifically, and other diseases in general can be
emphasised” (where is the evidence that exercise prevents “CFS/ME”?).
Therapists are taught that it is essential that “the three supplementary therapies are as different as possible. In
contrast to CBT, it is important that you do not consciously provide cognitive interventions, e.g. suggest that being
able to exercise more may mean that there cannot be a persistent viral infection in their body (but it is implicit that if
it is safe to build up a level of exercise to that of healthy people, then the participant cannot have an on‐