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

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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”.
To reiterate: the PACE Trial version of “pacing” (APT) requires homework and practice and includes
planned relaxation and activity, practised regularly and consistently (ie. effectively 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.
The “Theoretical Model” of APT is “The concept of fixed limits” and this is explained: “The basic underlying
concept of adaptive pacing is that CFS/ME is an organic disease that the person can adapt to but cannot change”.
This is clarified for the therapists: “Because people with CFS/ME are likely to be particularly sensitive to, and
fearful of, a perceived over‐emphasis on psychological factors, a physical model of disease that limits energy is
emphasised and used throughout treatment”.
Does this mean that the PIs acknowledge “CFS/ME” to be an organic disease in one arm of the PACE Trial
but not in two other arms of the same trial, or are APT participants being misled about the PIs beliefs,
(because in the other Manuals, a “physical model of disease” equates with deconditioning)?
It is notable that, unlike the Therapists’ Manuals for CBT and GET, the APT Therapists’ Manual states:
“Symptoms are regarded as warning signs to be ‘listened to’. It is assumed that the symptoms reflect a pathological
disturbance….good pacing will maximize the chance of natural recovery…Activity is therefore planned so as to balance
activity and rest”.
On page 21 of this Manual, the authors state: “There have been a number of supporters of adaptive pacing therapy
for chronic fatigue syndrome” (once again, there is no mention of “CFS/ME”), but there appears to be
confusion between “pacing” and “adaptive pacing therapy” because APT involves setting goals for
increasing activity: “The essence of pacing is that the person with CFS/ME uses self‐management of their level of
activity…The aim is to prevent sufferers entering a vicious cycle of over activity and setbacks, whilst assisting them
to set realistic goals for increasing their activity when appropriate” (which is the first mention in the
Manual of “increasing activity” as part of “pacing”).
The Manual continues: “The main key to effectively managing symptoms is limiting the amount of energy
expenditure. Examples of how patients describe this are: ’stopping what you are doing when the warning of fatigue
starts’ (and) ‘knowing how much to do before resting…’ (188 & 225 AfME 2003)”.
It is notable that the PACE Trial Investigators are willing to accept the AfME survey results on pacing as
reliable but dismiss the AfME survey results on GET.
The authors then state: “Too much activity or too much rest can each be unhelpful (AfME 2002)”. That “too much
rest can be unhelpful” comes from “Guidance on the management of CFS/ME”, an eight page document
produced by AfME in 2002 “to assist GPs in the assessment and management of patients with CFS/ME”, but it
should be compared with AfME’s major report of 2001 (Severely Neglected: M.E. in the UK), in which 91%
found rest (including bedrest) to be helpful; 8% found no change, and only 1% found rest made them worse,
so for the authors of the APT Therapists’ Manual to quote the AfME 2002 document seems disingenuous.
On page 23 of the APT Manual for Therapists, they are informed that: “…the person with CFS/ME alternates
from relative symptom‐free rest to activity‐induced symptoms”; this again, is assumption presented as fact,
because people with ME/CFS may not be “relatively symptom‐free at rest”. People with true ME may be in
constant pain when at rest; they may experience nausea, dizziness, sweating, shivering, breathlessness,