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

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PACE Trial participants and therapists alike may be misled about APT being the same as pacing: the Trial
literature states “APT…has been recommended by a recent Government working party as one of the treatments of
choice for CFS/ME”; however, contrary to the pacing recommended in the CMO’s Report that patients with
ME/CFS find helpful, APT requires planned activity.
The CBT Therapists’ Manual states about APT: “Activity is therefore planned”, which indicates a structured
activity regime, and the APT Therapists’ Manual lists other requirements for APT including “plan set activity
in advance” (so activity must be “set activity”, not simply what the patient may be capable of doing at the
time); there must be “activity analysis”; APT participants must “constantly review model, diaries and activity”
and there is the requirement to “involve relatives”, which is nothing like “doing what you can when you can”.
Merely calling the application of common sense a “treatment” does not make it one.
In summary, the PACE Trial version of “pacing” (APT) requires homework and practice and includes
planned relaxation and activity, practised regularly and consistently (ie. to a timetable) and the use of daily
diaries in which participants must analyse their own activities. Participants must undertake breathing
exercises and APT involves its own targets and methods. Its aim is that the participants do not remain at a
fixed activity level.
Referring to APT as “pacing” seems designed simply to offer a false sense of security in order to get patients
“on side”.
The Manuals for PACE Trial therapists and for doctors emphasise the need for “positive reinforcement”
throughout; each Manual drives home the message: “It is essential that you demonstrate positive reinforcement”
and “Every session you should positively reinforce all of their achievements, however small they may seem”.
It appears that the interventions must be assiduously “sold” to the participants, who must be encouraged to
stay in the trial at all costs.
This accords with what Peter White submitted to NICE in the St Bartholomew’s Stakeholder comments
(1.3.1.6, in which he denied that “CFS/ME” is an incurable chronic disease): “The expectation of both the
patient and the practitioner is vitally important in determining outcome”.
Despite the publicly available evidence to the contrary of the experience of people with ME/CFS (referenced
in Section 1 above), therapists are told that CBT/GET are “safe and effective treatments” for participants.
The SSMC Manual defines SSMC as non‐specific advice about balancing rest and activity and says that
“SSMC includes communication with and sharing of care with the participants General Practitioner”, which hardly
constitutes “Standardised Specialist Medical Care”.
A theme that emerges very clearly from the Manuals is the frequent ambiguity of language. For example,
the CBT Manual for Therapists states on page 18: “According to this model, the symptoms and disability of
CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance)”. By
using the word “predominantly”, the authors recognise that their model is incomplete, yet on page 21 this
uncertainty has disappeared and the same Manual confidently asserts: “Treatment is focused on addressing the
cognitive and behavioural factors that maintain the vicious circle of CFS/ME”.
There is no evidence that ME/CFS is a “vicious circle”, or that “cognitive and behavioural factors” maintain it.
Using quasi‐scientific language, the authors of the PACE Trial Manuals have authoritatively projected their
assumptions as proven facts.