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

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If a participant asks the therapist not to record the session, the therapist is instructed to: “ask them the reason
why…(and) try to get permission to switch on again as soon as possible”.
On page 40 of the Manual, therapists are informed that “It is perhaps inevitable that therapists will find that they
have mistakenly given a cognitive interpretation, or encouraged a form of exercise, especially in the first few months as
they are learning” (why would it be “inevitable” when APT is antithetical to the CBT/GET model?).
If participants ask “difficult” questions, such as “expressing doubt over APT as a result of reading or press”, the
therapist must not ask the participant what they think (this would be CBT), but can suggest they “discuss
with the clinic doctor”. If a participant has been “advised not to continue with APT by an outside influence”, the
therapist must “Contact centre leader and discuss with APT lead”.
The next section of the Manual addresses “Frequently Asked Questions, comments and issues”. There are a
number of questions that participants may ask during treatment. Below are a number of those potential questions and
the possible responses you could consider to bring the person back to the APT model” (it is unclear if this is just
badly written or if it amounts to coercion to keep the participant engaged in the trial at all costs). Some
illustrations include the following:
“Is this a cure?
• Be honest, the answer is no” (APT has never been trialled before, so how do the authors know that it
is not a cure? CBT/GET participants are told that they can “overcome” their “CFS/ME” but the APT
participants are told that they cannot; this is unacceptable in an MRC clinical trial because it would
inevitably have a nocebo effect – nocebo being the antonym of placebo)
• Aim of APT is to enable/facilitate a natural recovery response
• Aids natural recovery (surely this is the same as the aim directly above?)
• Recovery is achieved by balancing rest and activity (bullet point 1 states that APT is not a cure, whilst
the final bullet point says that with APT, recovery is achieved by balancing rest and activity).
“How do I deal with a set‐back?
• Adjust any programme…rather than increase your activity
• Main advice = rest (it is important to recall that the Oxford [ie. the trial entry] criteria allow
participants with psychiatric disorders such as depression to be enrolled in the PACE Trial; if
depressed people are told to rest, they may become even more depressed and the result will be that
APT appears ineffective, an outcome which many people believe would suit the Principal
Investigators, whose views on pacing are known to be unfavourable)
• Make realistic goals
• Listen to your body
• Re‐consider balance….needs versus wants”; participants are to be advised to “re‐read the Adaptive
pacing model of CFS/ME”.
“What is an exacerbation of symptoms?
• When symptoms have increased beyond your normal range
• Symptoms level stops you doing your baseline”.
“What do I do on a bad day?
• Rest, relax, sleep
• Consider reasons
• Re‐assess baseline.
“My illness is physical?
• Yes” (participants with the same disorder but in different arms of the same MRC clinical trial are
considered not to have a “physical” illness).