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

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The section on “Future goals” discusses “Where do I go from here?; where do I start?; current goals; new activities;
lifestyle changes and diversification; maintaining motivation and direction”. Participants are provided with “Notes
on using the Future Goals sheet” which must include:
• “Goal number: this is the number of the goal and indicates which goal has the highest priority
• “Goal: a brief description of the goal
• “How to record progress
• “Time scale
• “How realistic is the goal: this is a score from 0 – 10
• “Future goals: breaking down goals into manageable sections”.
Next comes consideration of return to work or finding a new job, including employment and educational
schemes.
It is notable that both the CBT and GET participants’ Manuals place much emphasis on returning to
work, but that the APT participants’ Manual does not. In the APT Therapists’ Manual, pages 105‐109 are
a back‐to‐work hand‐out for participants, but the therapist is simply told on page 109: “This information
can be given out to individual participant (sic) as required”, so it would seem that the issue of returning to
work in the APT arm appears to be at the discretion of the therapist and not a central issue as in the CBT
and GET arms of the trial.
As in the CBT participants’ Manual, at the end of the GET participants’ Manual is a section entitled
“Information for relatives, partners and friends”. Again, the authors do not even get the name correct: they refer
to “chronic fatigue syndrome (CFS) / myalgic encephalitis (ME)” and the section is replete with misinformation,
for example, one of the causes of “CFS/ME” is stated to be “Having high personal expectations and driving to do
things ‘perfectly’, which is assumption stated as fact.
Relatives, partners and friends are misinformed about “What keeps CFS/ME going”, and are told that being
“out of condition”, “an irregular bedtime”, and “receiving advice from a variety of sources” all keep “the CFS/ME”
going, but – inevitably – that GET can “aid recovery from CFS/ME” and that GET can “reverse” it (an
assumption stated as fact). Relatives are encouraged to “get involved” and to “set aside a regular time each week
to discuss how they (the participants) are getting on. This will give you the opportunity to reinforce their
achievements” (even relatives must use “positive reinforcement”).
As with CBT participants, relatives of GET participants are told that “Setbacks…are a ‘blip’ in the recovery
phase and certainly do not mean that GET has failed”. It is untrue that setbacks are merely a blip in recovery
from ME/CFS. Participants are further told that “setbacks” are temporary (“At these times, it is important to
remind the person that setbacks are only temporary”), an assertion that is untrue because a relapse for many
people with ME/CFS can last for months, years or even a lifetime.
If the person has a relapse, relatives are told they must “Encourage them to read the appropriate sections of the
manual in order to get back on track again”, which for a person with true ME could be contra‐indicated and
therefore is potentially dangerous advice.
Finally, relatives are told: “As long as a good balance of activity and rest is maintained, then recovery will be
sustained”. This is an unproven assertion and is the hypothesis supposedly being tested in the MRC PACE
Trial.
This entire Manual for GET participants is full of misinformation, misrepresentation, bias, assumption
presented as fact, prejudice, and alarming ignorance about ME/CFS. Even though ethics committees are
primarily concerned with ethics and not with science, given what is known internationally about ME/CFS, it
is incomprehensible how such a document received approval from any ethics committee.