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

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The illustrative diary provided for a GET PACE Trial participant for Wednesday includes walking the dog;
then working a full day from 9am – 5pm, and additionally from 9pm to 10pm it includes“household jobs”; for
Thursday, the diary includes walking the dog and then working from 9am – 5 pm, followed by an hour on
the computer and then an hour of “household jobs”; for Friday it includes “dropped kids off at school, walked dog
15 mins; household jobs (10am – 1pm); visited parents; pick up kids from school”, followed by an evening
watching TV from 5pm until 10pm; on a typical Saturday the “CFS/ME” participant takes “kids to sports”;
Sainsbury’s” and at 5pm takes “kids to movies”, with an hour watching TV from 9pm – 10pm; a typical
Sunday includes “take kids to park”, “out for lunch”, “walked dog with husband”, then watching TV from 5pm to
10pm, including having dinner. The diary timetable shows very clearly that this “typical” PACE Trial
participant with “CFS/ME” appears to have had only had one hour of rest in the entire week.
If this illustrative diary is in any way typical of PACE Trial participants, then they do not appear to be
unwell at all.
Without any apparent awareness of illogicality on their part, the authors being the next section: “A very
common factor that contributes to the maintenance of CFS/ME is reduced activity and increased rest”. Anyone who
could claim a weekly diary akin to the one the authors have provided as illustrative for a“CFS/ME” patient
does not suffer from “reduced activity”.
The authors then tell participants: “It is crucial that the first step of your graded activity programme is stabilising
your physical activity….Through this, your body is given time to adapt to the amount of activity it is doing and as a
result you’re not constantly trying to recover from symptoms”.
How does this apply to a person who is moderately affected by ME/CFS but doing their utmost to keep
going, still less to someone who is so ill that they struggle to bathe and feed themselves? Moreover, the idea
that ME/CFS can be stabilised at all is unproven.
On page 52 of the GET Manual for participants the authors set out their view of “The normal response to
exercise”; whilst true for healthy people, it is is unlikely to apply to sick people and is therefore dangerous
misinformation for people with ME/CFS.
Such “normal” responses to exercise are said to include: “increased breathing rate; increased heart rate; body
parts turning red in colour; sweating; increased temperature; ‘jelly feeling’ especially in arms and legs”, but none of
this takes into account the additional consequences resulting from the documented abnormalities of muscle
seen in ME/CFS.
The authors follow up the normal response to exercise with their view of the normal response after exercise,
which they assert includes “manageable stiffness and tiredness”; this is claimed to be “a positive sign that the body
is adapting and strengthening”, a misleading and potentially dangerous assertion that does not apply to
people with ME/CFS any more than it does to people with motor neurone disease or multiple sclerosis.
The continual reiteration of the phrase “normal response” may teach participants to distrust their own body
and to ignore symptoms that may be significant. If participants feel not just stiff and not just tired, but
experience flu‐like malaise after exercise, are they to interpret that as a “normal response”? How would
they know, having been taught to disregard what their body is telling them?
The authors train the therapists to tell participants that “moderate or intense stiffness do not indicate harm to
your body” (but they might well indicate harm for a person with ME/CFS).
Participants are advised that serious adverse reactions to exercise are rare and the message is that it is safe to
keep on with the prescribed exercises.