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

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Of particular note are the following points made by Dr Crawley:
• The CCRNC’s own Constitution says it is a “multidisciplinary organisation which exists to promote and
support the delivery of evidenced based treatment for children, young people and adults with CFS/ME
throughout the UK” whose objective is “To champion evidence‐based approaches to the treatment of
CFS/ME, such as those provided in the NICE guidelines” and which will use “clinical expertise to
inform healthcare policy” and will “provide training for clinicians and researchers from all
disciplines involved in the diagnosis and treatment of CFS/ME”.
• The CCRNC has an “Active training programme” and has “the ability to provide national training
programmes”.
• The CCRNC will “invite no more than four people drawn from National UK CFS/ME
organisations which explicitly support the aims and constitution of the organisation to sit on the
Executive committee as either observers or members”.
• Its research strength is that it has the “largest cohort in the world”.
• Its strengths are “working together ‐‐ 600 clinicians and researchers, MRC, NIHR (National Institute for
Health Research), Welcome (sic), patient and carer reps, charity membership”.
It is particularly notable that the Minutes record that when asked by Dr Charles Shepherd, Medical Advisor
to the ME Association, “whether, in the light of the widespread opposition to the NICE Guidelines, charities that
were opposed to them would be invited to become members or associates of the CCRNC executive”, Dr Crawley’s
response was: “In order to join the collaborative, charities would be expected to sign up to the evidence‐
based approach”.
The only possible interpretation of this is that patients’ charities are welcome to participate provided that
they accept the behavioural modification interventions of CBT/GET recommended in the NICE Guideline
(for which Dr Crawley was a member of the Guideline Development Group) and provided they accept that
“CFS/ME” is synonymous with “chronic fatigue”.
Given the volume of biomedical evidence that does not support Graded Exercise Therapy it would appear
that in this instance signing up to an ʺevidence based approachʺ involves signing up to an approach that
ignores most of the evidence.
It has been ascertained that ‐‐ even though the CCRNC used the NHS logo on its documents and it is clearly
closely associated with the NHS service provision for those with “CFS/ME”, the network is unaccountable to
anyone other than itself.
This would seem to be akin to medical totalitarianism, especially given that Wessely School “evidence‐base”
upon which the NICE Guideline is predicated has been so stringently criticised by international ME/CFS
experts.
Science is not furthered by a self‐reinforcing ʺcollaborativeʺ determined to exclude dissenting voices;
rather, a vigorous and honest dialectic is required. Medicine has no place for cabals and the lazy thinking
they foster.
The CCRNC has arranged conferences and workshops at which speakers included Professor Peter White;
Professor Simon Wessely; Professor Trudie Chalder and others noted for their promotion of the
psychosocial model of “CFS/ME”, including Professor Mansel Aylward.