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

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illness is non‐biological…” (this appears to be yet another reminder to the clinic doctor not to be fully open
with the participant, despite the fact that the CBT and GET arms of the trial are predicated upon a psycho‐
behavioural model of “CFS/ME”. It is also noteworthy that the authors have chosen the term “non‐biological”
as opposed to “psychological”).
“Warmth and Empathy
“…
With this patient group (extending warmth and empathy) is particularly important” (why is it “particularly
important” with this patient group more than any other?). “It is therefore very important that you convey
warmth and empathy at your first meeting” (as noted in comments on other PACE Trial Manuals, this “warmth
and empathy” are contrived and thus are insincere, which is misleading the participants). “Acknowledging the
difficulties they have encountered along the way in terms of their illness, whether related to its impact on their life or
response from other health professionals, is important” (the reason participants may have had difficulties with
other healthcare professionals could be the consequence of the published views of the PIs about ME/CFS,
illustrations of which can be accessed at http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf ).
“Sensitivity
“Although you cannot forever be thinking about whether or not you are going to offend them, it is worthwhile…
trying to use language that is not going to be alienating…
For example, if a participant calls their illness ME don’t attempt to
challenge this, ME or CFS is an appropriate term to use” (but the Trial Protocol and Manuals state that the PIs
are not sure if ME and CFS are the same illness).
“Positive reinforcement
“It is essential that you demonstrate positive reinforcement when you work with people with CFS/
ME. Often, they
will be very good at pointing out what they haven’t achieved. It is therefore important that you empathise and are very
positive about what they have achieved. Every session you should positively reinforce all of their achievements” (even
if there have been no achievements?).
“Establishing confidence in you as a Specialist
“Establishing the participant’s confidence in you as a therapist (so an SSMC “Specialist” becomes a “therapist”,
further demonstrating editorial carelessness) is important. This is likely to occur if you have knowledge of research
into CFS/ME”. If the Fatigue Service doctors were aware of the research set out in Section 2 of this Report
including immunological, neuroendocrine and cardiovascular research, as well as the acquired
abnormalities in gene expression, they would surely be more circumspect about their involvement in the
trial given that the biomedical research evidence invalidates the premise upon which it is based. Is it not
misleading to describe the Fatigue Service doctors as “specialists” if they are not familiar with all the
ME/CFS literature and if they do not inform participants of the existence of the biomedical evidence, or of
the fact that many clinicians discourage ME/CFS patients from undertaking incremental graded aerobic
exercise? Furthermore, as noted in Section 3 above, on 10 th October 2003 it was confirmed by Dr Gabrielle
Murphy that the “CFS” Clinic at St Bartholomew’s Hospital was no longer an immunology clinic but a
psychiatric unit – see http://health.groups.yahoo.com/group/MEActionUK / message 15999. Of the
original twelve Fatigue Service Centres, seven were under the auspices of mental health professionals.
“Encouraging optimism
“…
it is important that you encourage optimism about the progress they have made (how is this materially different
from “positive reinforcement”?). There is in fact some evidence that patients with symptomatic complaints
(“symptomatic complaints” is medical shorthand within liaison psychiatry for “all in the mind”) are more likely
to improve if you encourage a positive expectation” (invoking a “positive expectation” is called the placebo
response, which would normally be controlled for ‐‐ not actively sought ‐‐ in a clinical trial).