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

“Engaging Participants in SSMC
“Do’s (sic):
“Don’ts
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• Ask the participant what they would like to be called when you first meet
• Discuss the agenda for the appointment
• Show empathy, warmth, sensitivity and understanding (it is reasonable to question how such
“manualised” and programmatic qualities can be genuine)
• Give a clear explanation of the diagnosis using the participants own words where possible
• Be very positive about participants (sic) attempts to help themselves to overcome their CFS/ME
• Give participants the opportunity to discuss any fears or worries in relation to treatment (does this include
their fears or worries about CBT or GET?)
• Tell the participant that you will look forward to seeing them over the coming year (again, these are
“manualised” and programmatic instructions: if the doctor does not look forward to seeing a
participant in the Fatigue Service clinic, is the doctor being encouraged to be untruthful?)
• Use language that participants will understand.
• Get into an argument with the patient about their beliefs about the illness (this seems to indicate that the
PIs are anticipating patients who believe they are physically ill but have a concern that clinic
doctors view “CFS/ME” as a psychiatric disorder)
• Minimise symptoms by saying something like ’we all get tired’
• Imply that the symptoms are imaginary (if “specialists” have to be given such a written injunction,
then once again this seems to be evidence that the PIs anticipate that the Fatigue Service doctors
may inadvertently reveal that they do not believe “CFS/ME” is a physical disease).
Appendix 2: (the Patient Clinic Leaflet): this starts on page 16 of the SSMC Manual.
Those charged with distributing this leaflet via the Fatigue Service clinics are reminded in their instructions
that “WHEN PRINTING print on HEADED PAPER from your CLINIC….please do not use UNHEADED
PAPER. DO NOT GIVE THIS COVER SHEET TO PATIENTS”.
This leaflet has been referred in Section 3 of this Report; it can be accessed at
http://pacetrial.org/trialinfo.html
Some illustrative statements in the leaflet include the following:
“Symptoms often get worse if you exert yourself” (post‐exertional relapse is the cardinal feature of ME; if a
person does not experience post‐exertional relapse, ME cannot be diagnosed).
“People with CFS/ME are sometimes afraid that people will not believe that their symptoms are real. In this clinic we
believe CFS/ME is a real illness” (this is misleading because participants are likely to understand “real” to
mean “physical” disease, but the CBT/GET arms of the trial are predicated on the assumption that there is
no physical disease and that “CFS/ME” symptoms are the consequence of aberrant beliefs and behaviour).
“How is CFS/ME diagnosed?
“There are several descriptions of the typical symptoms and all these definitions agree that people with CFS/ME: