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

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(which is nothing like being “tired all the time”), intractable muscle pain and frequency of micturition,
including nocturia, would indeed be psychologically disturbed if they were not appropriately and
legitimately concerned about such distressing symptoms. The Wessely School, however, attribute such
symptoms to somatisation disorder and dismiss or disregard the evidence showing that such attribution is
unjustified.
It is unacceptable for such symptoms to be either dismissed or ignored by those who prefer not to accord
them even minimal consideration, but regardless of the evidence of significant organic pathology, White
concluded his Editorial: “Treatments that ‘reprogramme’ interoception such as graded exercise therapy and
cognitive behaviour therapy, seem to help most patients”. “Most patients” with ME/CFS, as distinct from those
with chronic “fatigue”, do not agree.
Inevitably, participants in the GET arm of the PACE Trial must, as those in the CBT arm, search for alleged
“maintaining” factors (such as symptom focusing).
However, unlike the Therapists’ Manuals for both CBT and APT, the GET Therapists’ Manual encourages
the therapist to go further, stating on page 35: “You can explain the previous positive research findings of
GET and show in the way you discuss goals and use language that you believe they can get better”.
Not only is it unethical for a therapist to convey to participants in a clinical trial that the therapist believes
they can get better with the intervention being tested, but this seems to be at variance with what the
therapist is told on page 78 of the same Manual: “Difficult questions relating to the trial: Participant expresses
doubt over GET. Explain that there are no particular references you can recommend for GET”.
The section entitled “Explaining the GET Model to Participants” is described as the “use it or lose it” theory,
with the benefits of exercise being extolled. Therapists are urged to: “…tell them that…an increase in intensity
will help further strengthen the body”, an assertion that is pure speculation in relation to people with ME/CFS.
Therapists are instructed: “Try to illustrate this using specific hobbies they have. For example, if working with a
musician, draw parallels with GET theory with learning to play to a high level. You might explain how a beginner will
need to start with practising musical scales, learning to read music and learning where to place their fingers on the
instrument. They can then learn music to grade I level, practise at this level for a while before feeling comfortable
trying grade 2. Such metaphors can be very powerful in getting a participant to understand the theory of
deconditioning and reconditioning” (would it be acceptable for this metaphor to be applied to people with
multiple sclerosis and to suggest that they have lost their muscle strength because of inactivity?).
Therapists are told “You can give them information on previous research trials of GET for CFS/ME that show
increases in physical strength, fitness, and functional capacity” (this should not occur in an on‐going clinical trial
– imagine the outcry if investigators testing a drug told some but not all participants that the drug was
successful before the outcome of the trial was known). Furthermore, if GET has been proven to be curative,
then the ethical standing of the PACE Trial would be in question, as the REC Guideline quoted above makes
plain:
“9.8: Research which duplicates other work unnecessarily…is in itself unethical”.
Therapists are taught that: “The role of exercise in…the prevention of major chronic diseases, such as
stroke…coronary heart disease…cancers can also be explained” (in patients with ME/CFS exercise, especially
incremental aerobic exercise, could in fact increase the risk of cardiovascular disease by promoting
inflammation).
Therapists are also told that “You can share with them the research that shows reduced numbers of mitochondria in
muscles of people with CFS/ME and how this is related to reduced energy capacity in their muscles as a result of too
much inactivity” (patients with ME/CFS do indeed have abnormal mitochondria, but it has not been proven