Journal of IiME Volume 9 Issue 1 d-responses) and, far from reducing claims for benefits, participants’ claims for benefits due to illness or disability actually increased from baseline to follow-up (McCrone et al PLoS ONE 7(8): e40808. doi:10.1371/journal.pone.0040808). Numerous FOIA requests for the raw data (which does not belong to the Investigators but to UK tax-payers) to be released have been refused on entirely spurious grounds, lending yet more support to the widespread opinion that release would conclusively demonstrate the failure of CBT and GET as vehicles for recovery from ME/CFS, indicating that their proponents have spent their professional lives in a null field. Given that there is an acknowledged nationwide lack of basic services for ME patients and that most have no access to NHS consultants and never get to see a neurologist, immunologist, endocrinologist or vascular specialist and even have profound difficulty in seeing a GP, the claim that the cost to the UK economy of “CFS” alone is £3.5 billion per annum is questionable (J Psychosom Res. 2012;72:242–7). Patients with ME/CFS experience real difficulty in seeing a GP: not only do many GPs refuse to accept that it is a legitimate disorder, but after the BMJ ran a campaign to list “non-existent” diseases that are best left untreated, in which ME features along with big ears and freckles (BMJ 2002:324:883885) patients with ME were removed from GPs’ lists, being tersely informed that: “This practice does not treat non-existent diseases”. The two major US institutions that -- despite the glowing reports of the PACE trial’s claimed success -- have revised their position on ME/CFS are the NIH and the CDC. (1) The US National Institutes of Health, one of the world’s foremost medical research centres, convened a Pathways to Prevention working group which in December 2014 published its draft Statement entitled “Advancing the Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome”. It is an important document, as it signifies a major change in attitude towards ME/CFS and casts further May 2015 doubt on the claimed success of the PACE Trial. The NIH Statement is unambiguous that the Oxford criteria (formulated by the Wessely School themselves and used in the PACE trial) are flawed and lack reliability, thereby confounding the ability to interpret results drawn from studies which used them to select cohorts and noting that use of the Oxford criteria may impair progress and cause harm. This being so, it can be surmised that all previous psychiatric “research” on ME/CFS that used the Oxford criteria (not just the PACE trial) used groups of people who were not properly characterised and thus those results also lack scientific credibility. The following quotations from the NIH are particularly significant: “ME/CFS exists. “The Oxford criteria (published in the Journal of the Royal Society of Medicine in February 1991) are flawed and include people with other conditions, confounding the ability to interpret the science. “Often, patients with ME/CFS are labelled as lazy, deconditioned, and disability-seeking; this hampers scientific progress. Both society and the medical profession often treat patients with ME/CFS with disdain, suspicion, and disrespect. Patients are frequently treated with psychiatric and other inappropriate drugs that may cause harm. “There is reproducible evidence of neurocognitive dysfunction with abnormalities in functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signalling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS. “This is not a psychological disease in aetiology. “Existing treatment studies (CBT and GET)…(have) not translated to improvements in quality of life. Thus, they are not a primary treatment strategy. “The focus on exercise programmes has further stigmatised and discouraged research participation. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 19 of 57
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