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

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In the section of the GET Manual for Therapists entitled “Adverse effects of GET”, the Manual’s authors
inform therapists that “Surveys by patient groups of their members have suggested that GET may be harmful to
some people with CFS/ME. It is now believed this finding was due to inappropriately planned or progressed exercise
programmes, possibly undertaken independently or under supervision from a person without appropriate experience”.
As noted in Section 1 above, a large UK survey found that there was no significant difference between the
number of adverse reactions suffered by those who undertook a programme of GET under an NHS
specialist (31.1%) compared with those who undertook such a programme elsewhere (33.0%). Although that
particular survey was in 2008 when the PACE Trial was underway, other similar evidence exists (see Section
1 above).
In the 2007 published (abridged) Protocol, the PIs rely on responses to a 2003 questionnaire (AfME
Membership Survey, 2003: “Your experiences”), stating “A further survey by Action for ME of their members
suggests that reports of deterioration with therapy are related to either poorly administered treatment of lack of
appropriate professional supervision”; however, when analysed, the results from the 2003 survey in relation to
GET show that when administered by a physiotherapist, 67% had a negative response and 33% had a
positive response and when administered by an occupational therapist, 100% had a negative response and
0% had a positive response. As Kindlon notes: “One doesn’t need to use any fancy statistics to know that the
results from the 2003 AfME survey do not ‘explain away’ the high rates of adverse reactions to GET at all” (Co‐Cure
RES, ACT: 5 th February 2010).
Without participants being provided with such knowledge, their informed consent may not have been valid.
In the section “Feeling Better With Exercise: The Cycle Of Reconditioning”, the therapist is told to create a “stable
baseline of exercise”, yet a person with ME/CFS may never manage this since ‐‐ unlike chronic “fatigue” ‐‐
their condition is by definition fluctuating.
Therapists are told that they must “ALWAYS ensure…that every stage is jointly negotiated”. How can
participants negotiate in such a situation? The purpose of GET is incremental aerobic exercise, so the
participant must push through symptomatic exacerbations, having been told that it is safe to continue.
Moreover, as the therapist is instructed to ensure “warmth” and “empathy” in order to engender the
participants’ trust, a participant who trusted the therapist would be unlikely to do much negotiating,
because they would want to be cured.
This Manual has the same instructions about tactics of “Engagement” as the CBT Manual for therapists,
including not letting participants think that “it’s all in the mind” ‐‐‐ “Many of them will report at least one
upsetting incident relating to a health professional, whether it is … not being taken seriously or being told it is all in
their mind” (but according to this model, it is “all in their mind”: the GET model is predicated on the basis that
there is no pathology, only psychopathology – including enhanced interoception or symptom focusing,
according to Professor White ‐‐ and flabby muscles).
White’s views on interoception are unequivocal. In his Editorial in the British Medical Journal (BMJ
2004:329:928‐929) he stated: “Patients with chronic fatigue syndrome underestimate their cognitive and physical
abilities, while being more aware of their internal physiological state, a phenomenon called interoception”. White’s
assertion that patients with ME/CFS are “more aware of their internal physiological state” than he appears to
think is reasonable, together with his statement that “this enhanced body awareness or interoception may itself
cause sedentary behaviour” has been robustly challenged.
Patients with ME/CFS whose lives are wrecked by balance problems (including frank vertigo), recurrent
pancreatitis, myocarditis, recurrent episodes of intense, crushing chest pain that are clinically
indistinguishable from cardiac infarction, vasculitis, neuromuscular incoordination (including difficulties
with swallowing and fine finger coordination, for example, doing up buttons, holding a pen or turning
pages of a book), difficulty getting enough air into the lungs, incapacitating post‐exertional exhaustion