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

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Page 9 of the SSMC Manual lists some “Frequently Asked Questions”, included in which are:
“Q 1. The patient complains that SSMC alone is really no treatment – what do I say?
“A(nswer). Explain that ‘more is not necessarily better’….People do recover naturally…(how does such advice
qualify as “specialist medical care”?).
“Q 3. The patient has been randomised to a supplementary therapy (ie. to CBT, GET or APT) and tells me
they would rather receive a different one – can I advise them?
“A. Explain that we are running the trial because we do not know which therapy will be most helpful for which people
and that is what the trial aims to find out…It may be helpful to point out that research shows that some treatments
may take some time to have a positive effect, and can be helpful after the face‐to‐face therapy has finished” (is this
subtle coercion for the participant to stay with an intervention that may be making them worse?).
“Other Questions:
“Q. What is my prognosis with SSMC alone?
“A. We do not know for certain, although specialist medical care provided by a fatigue clinic specialist has previously
been found to be helpful in a scientific trial” (no further information or literature reference is provided, and the
Trial Protocol states that only 10% of SSMC participants are expected to improve).
“Q. If SSMC alone can improve my symptoms how are you going to tell which therapy has helped those
receiving SSMC and another therapy?
“A. ….We will look to see if more people get better with supplementary therapy combined with SSMC compared to
SSMC alone”.
“Q. If I am receiving no medication, what is it about SSMC that may help improve my symptoms?
“A. Advice and support of a doctor may be as good as any other treatment” (does such non‐specific advice of a
doctor constitute “specialist medical care”?).
Appendix 1 starts on page 12 of the SSMC Manual and is entitled “General Therapy Skills”.
“Knowledge and skills required: As well as a sound knowledge of the aetiology, epidemiology, consequences and
available treatments of CFS/ME, a range of skills will also be necessary in order to help you engage and work
collaboratively with these people (but on page 18 of this same Manual, it is stated: “We don’t know what causes
CFS/ME”, so how can the Fatigue Service doctor have “a sound knowledge of the aetiology ‐‐ ie. cause ‐‐ of
“CFS/ME”?).
Essential skills are listed as: “Engagement, Warmth and Empathy, Sensitivity, Collaboration, Positive
reinforcement, Establishing confidence in you as a Specialist, Encouraging optimism, Engaging Participants in
SSMC”.
“Engagement
“In order to engage the participant in treatment (exactly which component of SSMC constitutes “treatment” is
not clarified) it is important that the doctor conveys belief in the reality of their symptoms…People with CFS/ME are
often sensitive to the over‐emphasis of psychological factors. In order to maintain participant’s (sic) engagement
throughout treatment, it will be important that you continue to use a medical approach and do not imply that the