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

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The Manual for Standardised Specialist Medical Care (“SSMC”) is entitled “Manual for Doctors.
Standardised Specialist Medical Care (SSMC)” and is written by Gabrielle Murphy, David Wilks, Michael
Sharpe, Mary Burgess and Trudie Chalder.
The Participants’ Manual for CBT is written by Mary Burgess and Trudie Chalder.
The Participants’ Manual for GET is written by Jessica Bavinton, Nicola Dyer and Peter White.
The Participants’ Manual for APT is written by the same authors who wrote the APT Manual for
Therapists.
The Therapists’ Manuals for CBT (page 5), GET (page 11) and APT (page 8) all inform the various therapists
that there is controversy about whether CFS, PVFS and ME are identical conditions. This is incorrect ‐‐ the
WHO considers them to be the same neurological disease. There is no controversy except the controversy
created by the Wessely School themselves, who do not accept that ME/CFS is a neurological disease and
who have created their own disorder “CFS/ME”, which is a behavioural disorder. It is vital to understand
that when the Manuals state “we will consider them together here as CFS/ME”, although claiming to include
patients with ME, they are not referring to ICD‐10 G93.3 (ME/CFS/PVFS) but to ICD‐10 F48.0 (ie. as a unified
behavioural disorder).
The “Summary of Therapies” in the Therapists’ Manuals and in the SSMC Manual describes APT as “simple,
non‐incremental pacing”; CBT as “complex incremental pacing”, and GET as “simple incremental pacing”.
In the table “Distinguishing between APT, CBT and GET”, it is stated in all the Therapists’ Manuals that CBT
and GET do not work from a pathological assumption but from a deconditioning assumption. This is an
unambiguous statement that the PIs believe that ME/CFS should be treated as though it is not a physical
disease, and it confirms that the MRC and DWP (with the support of Action for ME) are funding research
based on the conviction that is is a mental health problem.
However, page 43 of the Full Trial Protocol states: “APT will be based on the illness model of CFS/ME as a
currently undetermined organic disease”.
APT may not be the same “pacing” as patients have always understood it (ie. practical common sense,
which cannot be turned into a “therapy” because it concerns the intelligent self‐regulation of activity from
personal experience). Pacing is an innate survival instinct; no‐one invented it – it evolved as a means of
conserving sufficient energy to meet metabolic demands and is thus health‐protective, not “maladaptive
behaviour” as the Wessely School assert. Advising sick people not to heed this survival instinct ‐‐ ie. not to
rest when rest is essential ‐‐ is potentially dangerous.
The APT Therapists’ Manual states on page 19: “The pacing therapy used in this trial is based on that reported as
useful by people with CFS/ME and collated by the patient organisation Action for ME (AfME 2002, 2003)”.
However, the Chief Medical Officer’s Working Group Report of 2002 relied on the definition of pacing
included in the UK National Task Force Report on CFS/PVFS/ME (Westcare, 1994), where it is described as:
“Getting the right balance between rest and exercise…(This) will vary not only between individuals but also in the
same individual over the course of time…The simplest way of finding the ‘right’ level of activity is to LISTEN
TO YOUR BODY and do no more on a good day than you can manage on a bad day” (Section 14.3 – 14.3.2,
page 66‐67).