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

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increase in bone density; thinking ability (cognition); well‐being and mood; weight loss; body image;
confidence and “social contact”.
There is no acknowledegment or even recognition that participants may be experiencing many of the
abnormalities illustrated in Sections 1 and 2 above, or that aerobic exercise may be actively harmful for
people with ME/CFS.
It is unethical for therapists to tell trial participants that the intervention they are receiving in an on‐
going clinical trial is beneficial and, whilst true for healthy people, it may not apply to people with
ME/CFS.
Next comes a section that further extols graded exercise therapy (GET), and the authors do not hesitate to
use emotional manipulation, for example: “If you would love to be able to walk your children to school…GET helps
you to gradually build up your strength and fitness to achieve this”. It is unacceptable to make such a definite
promise of improvement to someone with ME/CFS.
There is a further litany of the alleged benefits of GET (already addressed by the authors, but therapists are
taught that they must always provide “positive reinforcement”): “In previous research studies most people with
CFS/ME felt either ‘much better’ or’ very much better’ with GET”; yet again, it is unethical for therapists to be
telling participants in one arm of a clinical trial that they can expect to feel very much better with the
intervention they are receiving, but the Principal Investigators seem to encourage exactly this with their
insistence that there must be constant “positive reinforcement”, which might be deemed to be “brainwashing”
participants.
This “brainwashing” (“positive reinforcement”) runs throughout the Manual, for example, participants are
beguiled by the authors: “You may be aware that the Chief Medical Officers Report of 2002 recommended GET as
one of the most effective therapy strategies currently known”. Not only did Peter White and Trudie Chalder
refuse to sign the CMO’s Report, but the authors of this Manual are co‐opting the authority of the CMO’s
Report even though they did not agree with it. Referring to the CMO’s Working Group Report in this way
implies Establishment approval of the idea that GET is effective for “CFS/ME” when to ascertain this is an
alleged objective of the trial.
How could the various ethics committees have approved such unethical weighting in one particular arm of
an MRC clinical trial, especially given the evidence that this particular arm of the trial is well‐known to be
particularly favoured by the Principal Investigators?
Without doubt, the MRC Data Monitoring and Ethics Committee saw these Manuals, as did the West
Midlands MREC (the latter having provided them under the FOIA).
It seems unlikely that the various ethics committee members ever read the Manuals, alternatively it seems
unlikely that they read them with due care and attention.
Were ethics committee members derelict in their duty or expediently compliant? Ultimately, however,
responsibility for the Manuals rests with the Chief Investigator, Professor Peter White, and it would ill‐
behove him to side‐step his own responsibility by seeking to transfer accountability to the West Midlands
MREC.
In the section “Can exercise make me worse?” participants are reassured that: “You will be working with
experienced physiotherapists who have been well trained in the application of exercise to CFS/ME”. Who,
apart from the Wessely School, trained these “experienced physiotherapists”? How can it be justified to
describe such physiotherapists (who seem to have been recruited from a general physiotherapy
background) as experienced and well‐trained in the application of exercise to people with “CFS/ME”, let
alone to those who may have genuine ME?