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

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cardiac arrhythmia, shaking, muscle spasms, leaking blood vessels resulting in spontaneous bleeds, vascular
spasms, and intense malaise (“feeling terrible”) even at rest.
Therapists are told that participants should ensure that activities are interspersed with periods of proper rest
and that “Another (way) that may enable the person with limited energy to achieve more is to alternative (sic)
activities” (one can only wonder if anyone proof‐read this Manual).
Therapists are advised that: “As natural recovery occurs the person with CFS/ME may find that they feel able to
increase activity. When such recovery occurs the person may wish to establish a new baseline. Activity…(is) built up
as tolerance increases”. Not only is there no guarantee that natural recovery will occur, neither is there any
evidence that “tolerance” will increase in patients with ME/CFS (who may be struggling to maintain enough
energy necessary for basic survival).
The Manual then informs APT Therapists about “Therapists Preparation and tools” and about “General
Adherence to Protocol”; cancellations or failure to attend must be “rearranged within 5 working days if possible”;
“Telephone contact between sessions …is not banned but should be discouraged”; “if a participant no longer wants to
participate in the trial…the centre leader…should be informed on the same day…”; “each session should be audio/or
video taped”.
Therapists are instructed in the “Knowledge and skills required”, which include “empathy, warmth, rapport,
supportive encouragement, interactive communication, active engagement between therapist and participant, problem
solving, involvement of family members, and liaison with employers, other health professionals and other outside
agencies”; therapists are instructed that it is important they convey to participants their “belief in the reality of
their symptoms” and therapists are told they are required to “demonstrate a sound knowledge of CFS/ME as
participants will generally be well‐informed about their illness” (many occupational therapists, including those
working in the “CFS” Centres from which PACE Trial participants were referred, are known to believe that
ME/CFS is a behavioural disorder ‐‐ see RiME NHS Clinics Folder at www.erythos.com/RiME ).
The authors then re‐instruct the APT Therapists that: “People with CFS/ME are often sensitive to the over‐
emphasis of psychological factors”, a curious statement, given that the APT therapists are supposed to be
working on the assumption that “CFS/ME” is an “organic disease”.
Notwithstanding, the CBT Therapists’ Manual cautions: “In order to maintain participants engagement
throughout treatment, it is important that you continue to use an integrative model and avoid promoting a rigidly
dichotomous view of physical and psychological illness”.
APT Therapists are informed that participants “may find that their symptoms initially worsen when they start
their APT programme”, but if true pacing is used (which APT is not), symptoms are unlikely to worsen when
patients pace themselves.
On page 31 of the Manual, APT Therapists are told: “Collaboration is an essential skill when working with people
with CFS/ME”: (surely collaboration is essential with all patients, whatever disorder they may be suffering
from?) and that: “It is essential that you demonstrate positive reinforcement when you work with people with
CFS/ME. Often they will be very good at pointing out what they haven’t achieved”.
This seems to convey the message that “CFS/ME” patients are somehow different and even psychologically
aberrant; indeed, the PACE Trial Manuals disparagingly refer to “these people” as though participants are a
different and difficult species. Perhaps this explains why APT Therapists are advised that: “Another useful
communication technique to assist in problem solving is the ‘broken record’ technique – where you repeat the
…statement frequently within a session to emphasise a… point”.
The Manual continues (page 33): “What are the available solutions? Brainstorm tried and tested solutions…Use
your imagination and be creative, even the most outlandish possibilities are worth considering”. How “outlandish”