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

Quotations from the Participants’ APT Manual
378
This 72 page Manual competes with the APT Therapists’ Manual for being the most banal of all the
Manuals; it contains the same misleading information as in other Manuals, for example, it states that doctors
are unsure if ME, CFS and PVFS are the same disorder, so they decided to refer to it as “CFS/ME”.
It is a remarkably sparse “Manual”; the repetition and lack of content must surely have left participants
thinking that this was no therapy at all.
Not only is it lacking in content but the Manual is unjustifiably patronising. It includes childish and inane
cartoons of a piggy‐bank, a battery, a set of weighing scales, a picture of a dollar coin cut to look like a pie
chart, and three envelopes, each of which fills most of a page. The same cryptic diagram which fails to
communicate anything meaningful about APT appears twice, once on page 9 and again on page 69.
Page 5 of this Manual explains APT to participants: “The underlying idea is that if people with CFS/ME use their
energy wisely, their limited energy will increase gradually…The essence of pacing is that the person with CFS/ME
uses self‐management of their level of activity in order to avoid exacerbations of symptoms”.
The Manual quotes from the 2002 Chief Medical Officer’s Working Group Report and, as with the APT
Therapists’ Manual, relies on the Action for ME (2002) document that purportedly summarised that Report,
for example: “Too much activity or too much rest can each be unhelpful”. As mentioned in the section on the APT
Therapists’ Manual above, only 1% of people with ME/CFS found that rest was unhelpful.
In the section “Important strategies used in pacing”, these are listed as:
“Establishing a baseline:
“…the person with CFS/ME alternates from relative symptom‐free rest to activity‐induced symptoms” (once again,
this is an assumption stated as fact, because people with true ME may not be symptom‐free at rest; as noted
in the comments on the APT Therapists’ Manual, symptoms experienced even at rest are likely to include
pain, nausea, dizziness, sweating, shivering, breathlessness, cardiac arrhythmia, shaking, muscle spasms,
vascular spasms, and intense malaise [“feeling terrible”] even at rest).
“Dealing with pressures to deviate from pacing:
“…You will be encouraged to find ways to keep within limits.
“Anticipating exacerbations:
“…You will be encouraged …to set limits rather than wait until severe symptom exacerbation has occurred.
“Proper rest:
“…Pacing involves practising relaxation to achieve proper rest.
“Alternating activities:
“…It is noted that people with CFS/ME may become fatigued because they have persisted too long with an activity.
One way to avoid this is to limit activity…”.
The emphasis is on “fatigue”; other cardinal symptoms of ME/CFS are ignored.