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

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• they have prevented the participant from recovering, which is another assumption
• when they have been identified and changed, the participant will get better, which again is
supposition.
It is not ethical to mislead trial participants in this way.
Pages 13 – 24 of the GET participants’ Manual on “Physiological Aspects of CFS/ME” and “Autonomic Arousal
in CFS/ME” are almost identical to pages 9 – 16 in the CBT participants’ Manual, but with some
inconsistencies.
On page 14 the authors assert: “GET can help by building muscle strength, which allows you to do more”. Even
although GET is promoted in the CBT participants’ Manual, this particular claim does not appear. Such a
claim in relation to people with ME/CFS is unevidenced and unwarranted.
In the GET participants’ Manual, the authors state: “Due to changes in metabolism and other adaptations to bodily
rhythms following prolonged rest, changes in the perception of body temperature may occur” but the CBT
participants’ Manual says about the same issue: “Due to changes in the blood volume and circulation following
prolonged rest, changes in superficial body temperature occur”; thus GET participants are told they they have a
“perception” of change in body temperature, but CBT participants are told that there is an objective change.
In relation to “Visual and hearing changes”, the GET participants are told that there is “a change in the way the
brain perceives external sensations like noise and light, with consequent sensitivity”, whereas the CBT participants
are told that “prolonged rest results in a ‘headward’ shift of bodily fluids” and that it this “ ‘headward’ shift of bodily
fluids” that is responsible for photophobia and hyperacusis, an assertion which, as noted in Section 3 above,
is pure speculation by the authors.
In relation to reduced tolerance to activity or exercise, GET participants are assured that “GET can help your
ability to undertake physical activities”, which is a declarative but unproven statement to participants that GET
will help them.
Concerning “changes in the central nervous system”, GET participants are told that: “One of the functions of the
nervous system is to co‐ordinate our muscles. GET can help by challenging your body physically, which can lead to
improved co‐ordination and balance”. Once again, this is a direct statement to participants that GET will help
them. Given the significant evidence of muscle abnormalities that have been documented in ME/CFS (see
Section 2 above), such a claim cannot be justified.
In relation to “Changes in mental functioning”, GET participants are told that: “Excessive rest may even affect the
way our brain cells make connections with each other” (notably, a claim that does not appear in the CBT
participants’ Manual) and they are told that: “GET has been shown to improve mental functioning” which, again,
is a direct statement to participants that GET will help them, even though the alleged objective of the on‐
going PACE Trial is to determine whether or not GET is helpful, so Professor White and his co‐authors are
essentially pre‐judging the outcome of the trial.
Sections in the GET participants’ Manual relating to “Alterations of the biological clock”; “Disturbance of cortisol
production”; “Disturbance of the sleep‐wake rhythm”; “Blood flow is altered”; “Muscle tension” and “Sweating” are
essentially the same as in the CBT participants’ Manual, but an extra claim is made for the efficacy of GET,
which is alleged to afford “a way of dealing constructively” with dysautonomia, a sweeping claim that is
entirely unsubstantiated in patients with ME/CFS.
Next comes a long section on the benefits of exercise and its positive effect on the cardiovascular system as
well as on muscle strength; muscle endurance; muscle flexibility; balance; the immune system; sleep;