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

Quotations from the Participants’ Manual on GET
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This 142 page Manual for participants allocated to the GET arm of the PACE Trial warns them on every
page that they must not reveal to anyone the contents the Manual: “This information is intended only for the
person to which is has been given for the purpose of undertaking GET for CFS/ME, and should not be shared, copied,
or published in any way without permission”.
At the same time, however, participants’ families and friends are co‐opted to share the same views as the
therapists (ie. to become “co‐therapists”). This effectively closes the exits for participants because family and
friends are urged to adopt the beliefs of the Investigators, for instance by repeatedly asking the patient:
“when are you going for a walk, where are you going for a walk, and who are you going with?”, thus
putting relentless pressure on the sick person. This sounds like the practice used by cults to brainwash their
captives.
This Manual is equally as disturbing as the Manual for CBT participants, and unproven claims are made for
the curative properties of GET, for example:
page 28
ʺIn previous research studies, most people with CFS/ME felt either ‘much better’ or ‘very much better’ with GET.ʺ
ʺResearch has now shown that carefully graded exercise (Graded Exercise Therapy) can also be a very helpful therapy
for CFS/ME.ʺ
page 83
ʺIt can be useful to keep setting yourself goals and challenges to focus your ongoing recovery after you have been
discharged.ʺ
pages 109 & 110
ʺAs long as a good balance of activity and rest is maintained, then recovery will be sustained.ʺ
Such claims do not accord with the evidence of more than 3,000 patients (see Section 1 above), nor with the
biomedical evidence (see Section 2 above) and such overt influencing of participants in one arm of an
ongoing trial may destroy the equipoise of the trial by “stacking the decks” in favour of the intervention
known to be preferred by the PIs; moreover, there is no guarantee of recovery with GET so it is unethical to
tell patients otherwise.
Since there is considerable overlap of the same misinformation in the CBT and GET participants’ Manuals,
this section will address only the more disturbing misrepresentations.
On page 10, the authors list “Factors that may contribute to the development of CFS/ME”, which is identical to
page 6 of the CBT participants’ Manual with one exception: the CBT participants’ Manual lists “Personality”
as an additional potential cause. In the PACE Trial, the alleged aetiology of “CFS/ME” thus appears to be
elastic in that participants are given a different explanation about causation that is tailored to fit the
assumptions of the particular therapy they are receiving.
On page 11 the authors state: “Maintaining factors are important in CFS/ME because they give us clues as to the
current problems that are stopping you from getting better”. This last sentence does not appear in the CBT
participants’ Manual and is notable for a number of reasons. It states about “maintaining factors” that:
• they exist, which is assumption stated as fact