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

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In their article, Clark and White aimed to review the literature relating to the role of deconditioning in
perpetuating CFS and the literature relating to the role of graded exercise therapy as a treatment for CFS.
They carried out a non‐systematic review of published papers and concluded – perhaps inevitably – that
“supervised graded exercise therapy reduces fatigue and disability in ambulant patients with CFS”. What is more
surprising is that they also concluded that: “efficacy may be independent of reversing deconditioning” and
that: “Further work is necessary to elucidate the risks, benefits and mechanisms of such treatment”. Despite their
conceding that more work is necessary to elucidate the risks, Clark and White asserted: “Patient education is
necessary to inform patients of the positive benefit/risk ratio in order to improve acceptance and adherence”. Given
that they admit that further work is necessary to elucidate the benefit/risk ratio, it is notable that they felt
able to describe that ratio as “positive” and to rely on this alleged positivity to engender improved patient
acceptance and adherence.
In their Manual for the PACE Trial the same authors state about graded exercise therapy: “Physical
deconditioning, exercise intolerance and avoidance caused by relative inactivity are reversed…aiming to
return a patient to normal health and ability”. If GET can “return a patient to normal health and activity”, what is
the purpose of this trial that is costing millions of pounds sterling? Furthermore, if GET can ʺreturn a patient
to normal health and ability”, is it ethical to withhold it from participants receiving CBT, APT or SSMC alone?
The authors tell GET therapists that: “Prolonged inactivity can perpetuate or worsen fatigue…in people recovering
from a viral illness”, the reference for which (number 15 in the Manual) is a study dating from almost fifty
years ago (Postgrad Med 1961:35:345‐349).
In their Manual for GET therapists, Bavinton, Clark and White state: “Physical deconditioning is characterised
by reduced muscle strength and aerobic capacity. This has been supported by a number of exercise studies that have
shown reduced exercise tolerance in CFS/ME patient compared to controls. Six of these studies found that people
with CFS/ME were either more deconditioned than healthy controls or at least as deconditioned as sedentary
healthy controls”. This is remarkable, since the authors of this Manual here vitiate their own hypothesis,
because if some people with CFS/ME are only as “deconditioned as sedentary healthy controls”, then can
CFS/ME be caused by deconditioning?
Furthermore, the authors fail to mention the significant body of evidence showing that exercise could be
harmful to some people with ME/CFS. Therapists ought to be made aware that such evidence exists in
order to meet the ethical requirement to ensure that all research staff are competent. Therapists employed in
an MRC trial might believe that they have a moral entitlement to know that they are delivering an
intervention which, however skilfully administered, could cause significant harm to some participants.
The references cited in support of the authors’ hypothesis which is the basis of the PACE Trial is mystifying
because those references also vitiate the authors’ hypothesis, for example, reference 22 in the Manual
(Bazelmans et al. Psychol Med 2001:31:107‐114) found that deconditioning was not a factor in ME/CFS.
Moreover it is notable that the authors of this Manual appear to misrepresent the findings of some of the
studies they cite in support of their own beliefs, for example, they acknowledge that there was a “negative
correlation with physical activity” in some studies upon which they rely, yet they turn this around and claim
that the findings of those studies support their own hypothesis: “….suggesting that deconditioning was
important even in these apparently negative studies”, a conclusion not arrived at by the authors of those studies.
In his submission on behalf of St Bartholomew’s Hospital Fatigue Service to the NICE Guideline Stakeholder
consultation process (2006), Professor Peter White said about those severely affected by ME/CFS: “We think it
may be worth thinking about one of the main aims of GET not being a particular amount of exercise, but more
of a behaviour change – therefore for anyone at any level, GET aims to increase what they are doing by
changing the way that they currently do things and then adding in something new” (Comments Table
6:297).