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

352
The therapists are taught about the importance of “set goals”: “A goal for GET should be a clearly
observable behavioural change, not a reduction or absence of a symptoms (sic)”. The participant has already
been told that recovery is possible, yet the goal is not to make the patient feel better, but to make them more
active ‐‐ once again, it brings to mind UNUMProvident’s “Chronic Fatigue Syndrome Management Plan”
referred to in Section 3 above: “Attending physicians (must) work with UNUM rehabilitation services in an
effort to return the patient / claimant back to maximum functionality with or without symptoms”.
“Long term goals (six months or longer)” are suggested to include: “riding an exercise bike for twenty minutes
every day; managing to vacuum the home all in one go; swimming 20 lengths three times a week” (anyone able to do
this is likely to have been wrongly diagnosed).
Therapists are informed that: “By week 4, most participants will be able to commence aerobic exercise” and that the
aim is to achieve “as soon as possible five or six aerobic sessions per week”. Anyone suggesting this regime does
not understand the disease ME/CFS.
Phase 2 (“Active Treatment”). Therapists are told that: “Graded exercise treatment follows the basic principles of
exercise prescription for healthy individuals, but adapted to suit the participant’s current capacity. The exercise
therapy should have two components: stretching and aerobic conditioning”. Aerobic exercise must “Start and remain
at 5 – 6 days out of 7”.
Therapists are instructed that the importance of “negotiating a sustainable baseline of aerobic exercise cannot be
overestimated”. Participants are to be told that they should “expect a mild increase in fatigue or muscle stiffness /
soreness as a normal response to exercise” (this is not necessarily “a normal response to exercise” ‐‐ it could
equally be a pathological response to exercise, but neither the therapist nor the participant is to be warned
about such a possibility).
Therapists are told that “some participants may not be motivated by a specific strengthening programme, and can be
encouraged instead to participate in functional strengthening exercises, e.g. cleaning high cupboards”. Is cleaning a
high cupboard an appropriate intervention in an MRC clinical trial?
If a participant is “keen to aim towards a goal that is beyond their current capability”, the therapist must “discuss
how they could increase their physical exercise to achieve their plan. For example, if the participant wishes to attend a
local kick‐boxing class (sic), they will need to build up their aerobic capacity to be able to achieve an hour of high
intensity activity” (any person who can even consider attending a kick‐boxing class for an hour has no right
to be in the PACE Trial, as they certainly do not have ME/CFS or even “CFS/ME”, which is the disorder the
Investigators claim to be studying).
Next comes consideration of “Preventing and managing setbacks”. Therapists are told that: “CFS/ME setbacks
usually involve an exacerbation of their symptoms. Participants may describe these as a ‘relapse’ ” (it is unclear what
kind of relapse does not involve an exacerbation of symptoms).
“People with CFS/ME can usually identify an increase in physical activity which may have attributed (sic) towards
their setback” but the therapist is quickly told that: “it is unlikely to be the exercise programme that is responsible”
(how can the therapist know this? This is a potentially dangerous assumption).
However, the therapist is told that: “A central concept of GET is to MAINTAIN exercise as much as possible
during a CFS/ME setback. This is to reduce the many negative consequences of rest…Some participants may be
resistant to this approach…Additional support may be required at this time”.
In the section “Encouraging a good night’s sleep”, the therapist is informed that: “exercise improves sleep” (where
is the evidence that this assertion is true for people with ME/CFS? The two references cited [numbers 39 and
40 in the Manual] do not relate to people with ME/CFS; one of them relates to female shift workers).