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

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“4. Everyone sees their research nurse three more times
“We will post you our questionnaires, so you can fill them in at home…Filling them in will take about an hour…You
won’t need to wear the movement monitor again” (lack of post‐intervention objective monitoring would seem to
be inexcusable in an MRC clinical trial that purportedly aims to determine how effective are the
interventions being studied: compared with the heavy commitment of 14 sessions of CBT/GET plus a
follow‐up session over a full year and the incessant keeping of diaries and record sheets, the wearing of an
actigraphy monitor for one week involves no work, and without this data, no meaningful conclusions can be
drawn from the trial).
“Could joining your study make my condition worse?
“…Some patient surveys suggest CBT and GET can make symptoms worse – but experts (the Wessely School refer
to themselves as experts in “CFS”) believe this happens when the therapy is not used properly or when there isn’t
good professional supervision” (this is misleading: in the light of the biomedical research evidence, many
doctors consider that CBT and especially GET are contra‐indicated in ME regardless of how well they are
delivered; moreover, as addressed in Section 1 above, the large AfME 2008 survey found that there was no
significant difference between the number of adverse reactions suffered by those who undertook a
programme of GET under an NHS specialist (31.1%) compared with those who undertook such a
programme elsewhere (33.0%), which undermines the validity of the reassurances in the leaflet).
“This is a national study. Here is a full list of the participating NHS centres” (it is notable how many of the
Centres are Mental Health Trusts).
Appendix 4: Managing Potential Difficulties (page 33 of the SSMC Manual)
These are essentially the same points that have been addressed above, ie. “The participant has a fixed physical
attribution of illness”; “The patient feels that a cause has been missed and wants further investigations”; “Patient
requests to withdraw from the trial”; “Cancellations, DNAs (did not attend) and missed appointments”; “Telephone
calls from patients”.
In relation to “The patient has a fixed physical attribution of illness”, the Appendix to the SSMC Manual states:
“If participants are insistent that there is an ongoing ‘physical’ problem…it is important that you acknowledge that
their illness is real but its effects can be reduced by the way they manage it” (emphasis added).
There is no evidence to support such as assertion; moreover, how does this accord with page 9 of the CBT
Therapists’ Manual, which states: “The assumption of SSMC is agnostic to the nature of the cause and best
treatment of CFS/ME”, so why would it be a potential difficulty if the patient has a “fixed physical attribution”
when the SSMC doctor is supposed to be neutral?
What this demonstrates is that the PIs do not believe that “CFS/ME” is a physical disease and the clinic
doctors probably hold the same beliefs, otherwise this reminder would not be necessary.
Appendix 5: information for participants about benefits (page 35 of the SSMC Manual)
This appendix includes information on “Work, Courses and Resources”; Information for people who are in receipt
of benefits”; “New Work rules for people in Incapacity Benefit”; “Income Protection”; “Disability employment
advisors”; “Work Care”; “Jobcentre Plus”; “New deal for disabled people”; “New Deal 50 plus”; “Linkline”;
“Learndirect courses and centres”; “Voluntary work”; “Citizens’ Advice Bureau” (sic).