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

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Next comes a section on the Borg Scale which is a measure of perceived exertion (see the section on the
Therapists’ GET Manual above), about which the authors state: “Do not concern yourself with any one factor
such as leg pain or shortness of breath, but try to concentrate on your total feeling of exertion”. This seems to be
measuring the unmeasurable, which is the hallmark of Cargo Cult Science (see Section 3 above).
Participants are told that they will be lent a heart rate monitor so that they can measure how hard they are
working during their exercises and are instructed on how to use it (it is to be strapped under the shirt and it
transmits a signal to a receiver on a strap like a watch strap).
This makes all the more incomprehensible Professor Peter White’s decision to abandon the use of actigraphy
monitors that are strapped round an ankle and which provide an objective measure of improvement (or
otherwise); compared with using a heart rate monitor and the need to keep daily activity diaries, RPE
scores, goal sheets, exercise diaries, GET plans, progress sheets and other records, the wearing of an
actigraphy monitor for a week at the end of the PACE Trial would not be at all onerous.
Participants are then subjected to more “positive reinforcement” and are told that the authors believe that
“muscle soreness” after unaccustomed exercise “is a normal response to increased exercise or physical activity, and
that it can even be seen as a positive sign that our body is being challenged and is strengthening”; this is the
reiterated personal view of the authors presented as though it were a generally agreed fact but is
inappropriate for people with ME/CFS.
More “positive reinforcement” follows: “The good news is that our muscles respond well to techniques that make
them feel less tension and more relaxed” – the authors’ explanation for muscle pain in ME/CFS is unproven; the
possibility that participants may have underlying physical disease has not been addressed and is clearly not
to be contemplated.
Endless admonitions to carry out strengthening exercise follow; (why do them? how often should I do
them? where should I start? when should I do them? what should they feel like?) and the inevitable
assertion (“positive reinforcement”) that participants get stronger with exercise (which again is another
unqualified statement that participants will get stronger, not that they might get stronger).
This whole section of the GET Manual for participants is deeply disturbing. It entirely disregards the
substantial evidence of muscle pathology in ME/CFS and participants are repeatedly told that they
should ignore exercise‐induced symptoms in muscle (because they are “normal”) by therapists who have
been taught to believe that “CFS/ME” is the consequence of deconditioning, which is to deny the
significant body of evidence that proves such a belief to be gravely erroneous.
In the section “Using exercise equipment at home”, participants are advised that if their graded exercise
programme includes a “treadmill (or a) cross trainer”, it is their own responsibility to familiarise themselves
with the equipment users’ manual. What are the correct diagnoses of people who have been included in the
MRC PACE Trial? If a participant is able to use such equipment consistently, then they do not have ME/CFS,
nor do they have the ME component of “CFS/ME”, and it is misleading for the Investigators to claim that
they are studying such patients.
Topics such as “sleep hygiene” are addressed at length (“sleep hygiene” should include a “wind‐down routine”;
establishing “an optimal sleep pattern”; calculation of total time asleep on an average night; “preparing for
sleep”; “using muscle relaxation” techniques, including advice on when to use muscle relaxation techniques to
help induce sleep, and using a “relaxation script” ‐‐‐ “you can then allow this feeling to float now towards the
muscles of your arms…you may now find that there is more space between your teeth…just notice how simple it can be
for your muscles to feel better”) but information that would help people accurately to understand their
symptoms is not mentioned because such biomedical evidence as illustrated in Section 2 above does not
feature in the Wessely School’s model of “CFS/ME”.