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The issue is the influence of Prof Peter White and Dr Esther Crawley (and apparently Profs Wessely and Chalder), who do not subscribe to a biomedical definition of ME, and who have wielded unconscionable amounts of influence in reconstructing ME as Chronic Fatigue (Broad church) and as a psychosomatic/psychosocial entity.
Those doctors have, over the years, received VERY many £millions in funding for CBT/GET and other psyche based studies into 'CFS', what they define as Chronic Fatigue. Whilst Esther Crawley claims to research ME, she, and Peter White, use broad church vague fatigue definitions.
But both White and Crawley have been given places on the CMRC, and Dr Crawley is Vice Chair.
AFME and AYME have long history of collaborating with Peter White and Dr Esther Crawley.
Prof Stephen Holgate, who proposed and chairs the CMRC, announced his proposals at a Royal Society of Medicine (RSM) conference in July 2008.....his proposals were for Biomedical Research, what he called 'omics' - genomics, proteonomics, metabolomics etc. NOT more ‘generalised’ research, which has already consumed tens of million of UK Public Money over decades.
Since then the only UK ME genetics researcher (Dr Jonathan Kerr) has lost his tenure. All of Dr Kerr's applications for funding from the MRC were rejected. Dr Kerr went on record stating that his applications were scuppered by psychiatrists on the MRC funding board. Dr Kerr's statements on that were recorded on video at an IIME conference.
It should be noted that the July 2008 RSM conference on ME at which Bioresearchers were allowed to speak, was arranged only due to a very widely supported ME Patient Protest outside the RSM in April 2008. The Protest, Petition, and Postcard campaign to the RSM was due to the RSM hosting a 'CFS' conference in April 2008 at which Biomedicine was not represented.
At that April 2008 RSM Conference Psychiatrists (Peter White included) promoted 'CFS' as a psychosomatic entity, and ridiculed the Canadian Consensus Criteria. The UNUM Representative, Professor Mansel Aylward also spoke at the RSM April 'CFS' Conference, as did Sir Peter Spencer, then CEO of AFME, against the wishes of the patients.
Due to the widespread and strong dismay in the patient community about the 'Psychiatrists CFS Conference' of April 2008, but especially due to the Protest outside the RSM, the Patient Petition, and a protest Postcard campaign to the RSM (post cards were sent from all over the world) the RSM convened a half day ME conference in July 2008, which patients and carers could attend as well as researchers.
At that July RSM Conference ME Bioresearchers spoke, alongside presentations from the children's charity Tymes Trust, and Prof Holgate announced his proposals for an MRC ME research collaborative of some kind.
Prof Holgate did not propose more involvement and influence by psychosocial proponents, who have wielded unreasonable power in ME research, policy, and perpetrated massively damaging, distorted portrayals of both the disease and the patients, over decades.
It should be noted that the RSM Patient Protest was disparaged by AFME and not supported by the MEA. However those charities’ representatives were more than happy to attend the second RSM conference that was engendered by the Patient Protest.
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