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

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was available even before the publication in “Science” on 8 th October 2009 of the discovery of the retrovirus
XMRV that in the USA has been shown to be strongly associated with ME/CFS (for example, Archard et al;
Lerner et al; Chia et al – see Section 2 above).
On page 18, under “What factors perpetuate CFS/ME?”, the authors state: “According to this model, the symptoms
and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours
(avoidance)”. This is another assumption portrayed as fact.
Also on page 18, the authors discuss “Avoidance of activities” by people with “CFS/ME”, but the paragraph is
self‐contradictory; it says that people with “CFS/ME” avoid activities because of fear yet, despite this fear of
activity, patients resume activities, and this resumption of activity causes them to avoid activities because of
fear. By endeavouring to construct their own “vicious circle” model to underpin their own beliefs, the
authors appear to reveal a singular lack of reasoning.
On page 19 the authors assert that people with “CFS/ME”: “will often pay a lot of attention to their symptoms
which may result in an exacerbation of symptoms”. ‐‐ another assumption presented as fact: there is no evidence
that people with ME pay more attention to their symptoms than people with other serious organic diseases.
On page 21 the authors state: “Treatment is focused on addressing the cognitive and behavioural factors that
maintain the vicious circle of CFS/ME”. This is a declarative sentence (ie. that “CFS/ME” is maintained by
beliefs and behaviour): once again, this is a Wessely School assumption that is stated as fact.
On page 22 the authors assert: “Treatment aims to help participants improve their level of functioning which in turn
reduces fatigue”. This clearly states that improving levels of functioning reduces fatigue: apart from being
back‐to‐front (reducing fatigue is more likely to improve functioning), this is another Wessely School
assumption stated as fact.
Also on page 22, the authors are explicit: “A variety of cognitive and behavioural strategies will be discussed with
participants during their CBT sessions to help them improve functioning as a primary goal”. It is clear that the
primary goal is “to improve functioning” (therefore reducing fatigue seems not to be the primary function).
This is essentially the UNUMProvident “back to work, with or without symptoms” mantra (UNUM’s “Chronic
Fatigue Syndrome Management Plan” dated 4 th April 1995 authored by Dr Carolyn L Jackson).
On page 23, the authors state that frequent unhelpful cognitions include the patients’ fears that: “activity will
make my problems worse”. As these “fears” may be based on patients’ long experience of such exacerbations
(documented in a wealth of ME/CFS literature as post‐exertional malaise) they must be taken seriously. If
the PACE Trial therapists are encouraged to disregard caution that might be vital to participants’ health, this
raises serious ethical questions.
Pages 28 and 29 of the CBT Manual for Therapists summarise the central assumptions made in the CBT arm
of the PACE Trial by Mary Burgess and Trudie Chalder:
i) participants are assumed to have no pathology, because the authors state that CBT and GET do not work
from a pathological assumption
ii) CBT and GET will work from a ʺdeconditioning hypothesisʺ (that is, the authors assume that participants are
fatigued because they are physically unfit); the authors do not consider that symptoms result from disease,
but from using deconditioned muscles
iii) APT does not aim for an improvement in function