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

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someone to change their fundamental beliefs about the such an important issue as the nature and causation
of their disease.
“There is no doubt that getting people to change previous routines can be difficult in a number of ways. The
participant may be very fearful of changing the way they do things, fearing worsening of the symptoms. They may find
that their symptoms initially worsen when starting their CBT programme”: if participants’ symptoms do not
worsen with exertion, then they do not have ME and should not be in an MRC Trial that purports to be
studying those with ME.
That symptoms do indeed worsen in ME/CFS patients after exertion has been established and has been
shown in Section 2 above. Moreover, Peter White’s own study showed that the pro‐inflammatory cytokine
TNFα remains elevated three days after exercise in “CFS/ME” patients (JCFS 2004:12(2):51‐66).
“Acknowledging the challenges associated with the programme is important if you are to win their trust”: how is it
possible to win “trust” when the therapist does not disclose to the participant the central assumption of the
CBT model that there is no physical disease process and that symptoms result from psychological and social
factors?
Throughout the Manual, the therapist is reminded on at least eight separate occasions to demonstrate
empathy and warmth.
“Collaboration
“Collaboration is an essential skill in working with people with CFS/ME. Up to the point of meeting you, many
participants will not have been included in the management of their illness. Collaborating throughout treatment will
help participants to feel more involved in their treatment and will help them to regain some sense of control”: this
again demonstrates the authors’ lack of insight: how can patients regain some sense of control when they are
being manipulated into changing their correct beliefs and behaviour and it is therapist who is “taking
control”?
“You will be demonstrating a collaborative style at your first meeting when you individualise the CBT model to their
illness. By this we mean drawing a model together, examining factors they think have been responsible for triggering as
well as maintaining the illness”: patients may correctly think that maintaining factors are a virus and a
dysfunctional immune system, so it is highly likely that a significant proportion of participants with
ME/CFS will – if not screened out by use of the Oxford entry criteria ‐‐ report that they have a physical
disease caused by a viral infection and this particular belief is one the therapist must address, as belief in ʺan
ongoing virusʺ is considered a barrier to recovery.
“Agreeing an agenda for each treatment session, asking for their input in making suggestions for their activity
programme and evaluating previous sessions will help participants to feel valued and included in the treatment
process”: the ʺcollaborativeʺ model proposed, one that promises to help the participant ʺregain some sense of
controlʺ, may actually achieve the opposite by subtly dis‐empowering them.
What purpose is served by asking the participant for their opinion about what is wrong with them if,
eventually, they must accede to the therapist’s understanding of ME/CFS?
Page 35 of the Manual offers further advice on maximising engagement:
“Doʹs: …….
• “…..Show empathy, warmth, sensitivity and understanding during the assessment process (and thereafter)”