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

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trial, the recruiting participant might no longer feel s/he had the right to drop out or withdraw consent at
any time of their choice.
Secondly, a participant who was recruited by a friend or family might also feel similar obligations of loyalty
to their friend or family member, so their own data might also be unreliable.
Thirdly, only participants who are enjoying or benefiting from their participation are likely to have recruited
others, with the result that a potential participant is exposed to a positive viewpoint that might not
adequately reflect the risks and burdens of participation, as well as arousing fears that they are missing out
on something helpful. This could be viewed as making unjustifiable claims about the therapies on trial
(which could be in breach of the GMC’s Guidelines for Good Medical Practice (section 61) that states: “You
must not make unjustifiable claims about the quality or outcomes of your services in any information you provide to
patients. It must not…exploit patients’ vulnerability or lack of medical knowledge”).
Fourthly, participants who do not recruit anyone might be influenced by the suggestion that they should
recruit and may feel guilty if they are unable to recruit more participants, with the result that they may
compensate by being ‘better’ (ie. more positive and less critical) participants. This could affect they way
they report their experience and thus invalidate their data.
Other institutions concerned with research integrity require approval for all methods of advertisement prior
to use and they consider “advertising or soliciting for study participants to be the start of the informed consent
process…Advertisements must be reviewed and approved…When advertising is to be used, the information contained
in the advertisement and the mode of its communication (must be reviewed) to determine that the procedure for
recruiting participants is not coercive and does not state or imply a certainty of favourable outcome”
(http://orip.syr.edu/sop/sop036.php ).
The tactics used for recruitment to the PACE trial seem to indicate the difficulties encountered by the
Investigators, a fact that is believed by many people ought to have raised concern with the various ethics
bodies.
It is believed that the difficulty in recruitment may have resulted in coercion of sick people.
Coercion to take part in the MRC PACE Trial?
Dr Gabrielle Murphy, co‐author of the PACE Manual for doctors on Standardised Specialist Medical Care, is
also co‐author of a book published on 30 th September 2009 (“Coping Better with CFS/ME: Cognitive
Behaviour Therapy for CFS/ME”, Karnal Books, £14.99), the Foreword of which by Professor Robert Bor,
Lead Consultant Clinical Psychologist at the Royal Free Hospital where Dr Gabrielle Murphy works, states:
“By working systematically through the exercises in the book, readers can expect to gain further insight into their
condition as well as confidence in managing and overcoming it. They can do so in the knowledge that the ideas come
from a sought‐after clinical centre and are based on the most useful and modern approaches…It conveys the positive
message that patients suffering from CFS/ME can enjoy better physical and mental health”.
Gabrielle Murphy’s co‐author is Dr Bruce Fernie, a chartered counselling psychologist also at the Royal Free
Hospital, whose research interests lie in procrastination, not in ME/CFS.
Not only does Professor Bor’s Foreword seem to indicate a disturbing lack of insight and knowledge about
ME/CFS, but it seems that the “sought‐after centre” is to be closed, possibly because it may be thought to have
served its purpose in recruiting participants attending its Fatigue Service for the PACE Trial, although this is
not the explanation for closure that is being proffered.