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

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going viral infection); should a participant speculate in this way you should remain non‐committal…This is not the
same as responding to a participant’s questions about the therapy and providing educational explanations as to how
and why GET works and how it is applied. This is allowed and is in fact imperative”.
The therapist is taught that: “in contrast to APT, it is important that the ‘envelope theory’ of pacing is not adhered
to. APT is underpinned by an organic disease model which encourages a person to stay within the limitations set
by their illness, and being directed by their symptoms as guides to what they can do. The rationale of APT involves the
ability of the body to heal itself by not provoking symptoms. In significant contrast, GET encourages the participant to
stretch the limits of physical capacity in order to improve them” (here, again, is acknowledgement that GET is not
underpinned by an organic disease model).
Notably, therapists are advised that “if a participant already attends a gym and follows a gym‐based programme,
they will not need to undertake the PACE strength exercises” (how many participants are already attending a
gym and following a gym‐based programme? If a participant is doing so, then what are they doing on the
PACE Trial? To include such people in the PACE Trial and compare them with people with ME/CFS seems
to make a mockery of scientific integrity.
In the section “Troubleshooting”, the therapist is given guidance about “Adherence or compliance problems:
Participant wishes to terminate therapy or trial” and is advised: “In the first instance, you will contact the
participant by telephone to ascertain the reason for drop‐out…and establish whether any concerns can be resolved.
This information should then be discussed with both the SSMC doctor and the centre leader. If the participant does not
wish to talk to the physiotherapist or SSMC doctor, the centre leader or nominee should contact them themselves”.
Given that participants have been assured ‐‐ in writing ‐‐ that they can leave the trial at any time without
giving a reason, this looks like coercion to stay in the trial (and such coercion is said by participants to take
place – see Section 3 above).
General advice to the GET therapist includes: “it is best to use the language that the participant does to describe
their symptoms. For example if a participant called there (sic) illness ME don’t attempt to challenge this, ME or CFS
is an appropriate term to use”.
Here is evidence that people with the WHO classified neurological disease ME are deemed to be included in
the PACE Trial, in which case it is inexcusable for the authors and Investigators to have so blatantly
disregarded the evidence‐base pertaining to it and to have re‐configured it as a somatisation disorder that is
at the heart of the “GET model”: the Investigators believe that participants do not have a physical disease,
but that they have an abnormal perception of effort and have become deconditioned as a consequence.
Nothing could be further from the truth.
Therapists are advised that if participants are “insistent that there is an ongoing ‘physical’ problem…it is
important that you acknowledge that their illness is real but its effects can be reduced by the way they manage it” (this
is misleading: the effects of ME/CFS – as distinct from chronic “fatigue” – cannot be ameliorated by the way
it is managed: over 3,000 people struggling to cope with life‐wrecking symptoms which do not feature in the
PACE Trial models of “CFS/ME” have first‐hand experience that this is untrue – see Section 1 above).
It is an affront to people with ME/CFS for the authors of the GET Manual for Therapists to refer to the
intractable pain that is the daily burden of so many people with ME/CFS that cannot be controlled even with
opiates as “muscle soreness. Some people describe this as a pain, or as a heavy or stiff feeling, or a muscle tension”; to
do so indicates no understanding of the reality of ME/CFS. It is notable that in 1990, Trudie Chalder (to
whom specific acknowledgement is made by the authors of this Manual) referred to “the profound muscle
pain that characterizes the syndrome” (Brit J Gen Pract. February 1990:82‐83). People have been driven to
suicide because they could no longer tolerate the intense and intractable pain of ME/CFS
(http://www.meactionuk.org.uk/Background_Information_re_CBT.htm ).