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

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Page 5 of the SSMC Manual informs Fatigue Service clinic doctors that all participants will already have
received the standardised patient clinic leaflet (which was to be handed out by the Fatigue Service clinics).
Fatigue Service doctors are told that: “General advice on symptoms and activity management should be given. This
advice should be compatible with that in the Patient Clinic Leaflet.
“It is important that this advice:
• Is as helpful as possible (why does a doctor need to be reminded that medical advice should be
helpful?)
• Adequately reflects our uncertainty about aspects of management….for example, whether it is better to try
and increase activity or to focus on pacing one self (sic) to manage available energy most effectively (but
participants in the CBT and GET arms of the trial – who will also be receiving “SSMC” – have been
told that they can recover by increasing activity, so the doctor is told to give advice that directly
contradicts the therapists’ advice)
• Does not contradict the principles of practice of any of the supplementary therapies, for example, does not
argue against increasing activity or pacing (so the SSMC doctor must explain any increase in
symptoms after CBT/GET as a normal response to increased activity, but must explain the same
symptoms after APT as pathological)
• Is positive about the role of SSMC in advising and supporting the patient to create the best conditions for
natural recovery (the advice given to participants by the clinic doctor should not be “positive” – or
negative – about the role of any of the interventions used in an on‐going clinical trial).
Page 6 of the SSMC Manual states: “The first SSMC appointment takes place within one month of randomisation.
Participants will be seen by their SSMC doctor on a minimum of two further occasions in the 12 months after
randomisation…Each session …would commonly last about half and hour” (so participants ‐‐ including those
receiving SSMC alone ‐‐ may see the Fatigue Service clinic doctor only three times for 30 minutes each time
during their participation in the trial, a total of 90 minutes throughout the trial, which purports to constitute
“specialist medical care”).
Page 7 states: “SSMC sessions will be audiorecorded…The duration of each session can be taken from the
audiorecording machine display and should be recorded in the medical notes, so that the total time spent in SSMC can
be recorded… at the end of the participants (sic) SSMC”.
“Specific SSMC problems that might arise should be referred… to the centre leader, who can discuss the
problem…with the SSMC lead who is Gabrielle Murphy or if necessary the relevant PI who is Michael Sharpe”.
Page 8 gives instructions about “Missed sessions…..If a participant drops out of SSMC it is essential that the
Research Nurse is made aware of this immediately”.
“What SSMC is not:
“SSMC should be the usual medical care that one would reasonably expect clinic doctors experienced in the assessment
and treatment of CFS/ME to provide (how can “usual medical care” be regarded as “specialist medical care”?).
• …it is also essential that any advice given should not strongly favour any one particular illness
management approach above another and such advice must be compatible with any treatment
that the participant is receiving (APT, CBT, GET or SSMC alone) (so the doctor is placed in the
logically irreconcilable position of providing advice that must be consistent with two
opposing models of the same disease, ie. a pathological model for APT participants versus a
psycho‐behavioural model for CBT/GET participants)
• SSMC does not involve seeing the patient on a frequent basis to deliver a version of …APT, CBT and
GET).