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

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dispute/negotiation of benefits or pension” is a predictor of a negative response to therapy. Later in the leaflet,
under “Will you keep my details confidential?”, participants are told “Occasionally, other researchers will need
to see your notes…an audit might be run by …one of the organisations funding our study” (so the DWP can have
access to participants’ confidential medical notes as well as to the psychological questionnaires and personal
financial data obtained by the PIs. The majority of people with ME/CFS experience considerable difficulty
when claiming benefits, which is understood to be linked to the fact that the DWP is known to be targeting
people with ME/CFS to remove them from benefits).
“Whichever treatments are shown to be best, we expect they will become more widely available across the country”
(many people believe it to be a foregone conclusion that CBT and GET will be “shown” to be effective and
that even more Fatigue Service psychiatric clinics will be opened. As noted above in the comments on the
GET Therapists’ Manual, Professor Peter White is on record as asserting that GET should apply even more
to those who are severely disabled: on page 24 of that Manual, they assert: “Due to greater levels of inactivity
in the more severely affected group, the deconditioning model should apply equally if not more to these patients”).
How anyone could think this would be an appropriate intervention for people like the late Lynn Gilderdale
defies reason (http://www.timesonline.co.uk/tol/life_and_style/health/features/article6998742.ece) but,
impervious, one psychiatrist who views ME as a psychiatric disorder declined to contribute to the article:
“My views are too controversial to publish”.
Next come brief descriptions of the four interventions: SSMC; APT; CBT and GET, none of which even
mentions any of the extensive pathology that is known to exist in ME/CFS.
“Do I have to join your study?
“No. You decide whether or not you want to help us” (this is expressed in emotive and coercive language and
may make the person feel guilty if they decide they do not “want to help” other people with ME/CFS,
especially as they have been told that certain PCE Trial therapies are already known to be successful). Even
if you sign the forms, you can still leave the trial at any time – and you won’t even have to give us a reason” (this
cannot be true, because anyone who wants to drop out will receive an immediate telephone call from the
Centre leader; certainly it is known from participants who have withdrawn just how much pressure was put
on them to remain in the trial, which can only be described as coercion).
“What will happen if I join your study?” Illustrations include the following:
“1. We ask you questions and measure your fitness
“A six minute walking test will tell us how physically fit you are” (this is not the case; only sequential testing will
accurately measure the physical ability of people with ME/CFS). Your nurse will give you a movement
monitor…and ask you to wear it on your ankle for one week”.
“2. You find out whether you are suited to our study
“…A week later, you will bring back the movement monitor and the questionnaires. Your nurse will ask you more
questions, including how CFS/ME has affected you financially (would a research nurse in any other MRC clinical
trial ask participants with a classified neurological disease how it had affected them financially?) and ask you
to do a two‐minute step test to tell us more about how fit you are (a two‐minute step test cannot provide clinically
useful information for people with ME/CFS). If we decide you should not be in our study, your nurse will refer you
back to your clinic doctor”.
“3. A computer randomly allocates a treatment for you”