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

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In his presentation entitled “NHS Service Implementation Programme for ME – Progress made so far” to the
All Party Parliamentary Group on ME on 16 th November 2005, Professor Pinching is recorded as having said
that he did not accept that evidence existed to justify treating subgroups of ME/CFS patients differently, and
Section 3.17 of the Trial Identifier states that there is no intention to perform subgroup analyses of
“fatigued” participants.
The PACE Trial is thus a wasted opportunity to advance scientific understanding of “CFS/ME”.
Sub‐grouping, however, is contrary to the Wessely’s School’s intention of lumping together all states of
“medically unexplained” fatigue, an approach that does not enhance scientific understanding in any way
but intentionally obfuscates it.
At the MERUK International Research Conference held on 25 th May 2007 at the University of Edinburgh,
(which no‐one from the Wessely School chose to attend), Professor Nancy Klimas – perhaps the world’s
most distinguished and respected ME/CFS clinician and researcher – highlighted the need to subgroup
patients into at least three main categories: those with autonomic, those with inflammatory and those with
endocrine symptoms, which she said would make research “a data‐driven process”. This is in direct contrast
to the Wessely School’s seemingly non‐scientific modus operandi for which they have received many millions
of pounds sterling.
Audio and video recordings will be made of participants
The “Invitation to join the PACE trial” leaflet informed participants that: “We will audio‐ or video‐record the
interview when the nurse asks about your emotional and psychological symptoms”. It is noted that there was to be
no recording of patients’ physical symptoms. It continues: “We will also audio‐ or video‐record your treatment
sessions”.
The PACE Trial’s emphasis on control is ominous: even the doctors’ Standardised Specialist Medical Care
(“SSMC”) Manual focuses on obtaining and recording participants’ “admissions” of psycho‐emotional
aspects of their illness.
It is generally accepted that when people are aware of being recorded/filmed, there is an additional area of
subtle pressure being applied to which they will react and which might influence their responses.
Notably, both the CBT (page 26) and GET (page 29) Therapists’ Manuals advise therapists that “If
participants are unclear of the reasons, you can remind them that you are doing this for the purposes of supervision,
assessment of competence, assessment of therapy differences and other research purposes”, but no explanation is
provided.
Could it be for the “research purposes” of the DWP? What do participants understand these “other research
purposes” to be? Not to inform participants of the precise nature of these “other research purposes” does not
accord with the research requirement for transparency and would seem to be in breach of the Declaration of
Helsinki (see below).
The Wessely School’s reason given in the “Invitation to join the PACE Trial” leaflet for such recordings was:
“We do this to make sure your sessions follow the manual we have written for our study” and “We do this to supervise
the nurse and to make sure the interview is done properly and the right interpretations are made”.
This seems implausible: video recordings of nurses administering potent chemotherapy are not made
just so that the nurses delivering the therapy can be supervised.