Journal of IiME Volume 5 Issue 1 (May 2011) trials into ME/CFS. The most recent trial ,the so called PACE Trial, which tested the efficacy and safety of cognitive behaviour therapy (CBT), graded exercise therapy (GET), adaptive pacing therapy (APT) comparing it to standard medical care (SMC), gained a lot of publicity form the friends of the investigators who control the media misinformation – but it was soundly criticised by most patient groups who have condemned these results as flawed and not fit for purpose for neurological ME/CFS patients. We need clinical trials to help healthcare professionals make decisions on how to best help their patients and even if causation of this disease is not known the results of such trials can give researchers ideas where to look. Without evidence from clinical trials treatment remains elusive for most patients suffering from this disease. ME RESEARCH ME press conference September 1990 in San Francisco, with Dr Paul Cheney. Wishing to make sure that the press corps understood how serious a disease ME/CFS is, Cheney continued: “I think it‟s really important for members of the press to recognise that what we‟re talking about here is not common fatigue….What we‟re talking about here in this systemic illness is that the debilitating fatigue is one of the primary symptoms, as it is in almost all autoimmune diseases and many other systemic diseases….We need to constantly separate out people who have common fatigue from people who have this illness….People who have competent immune systems don‟t get bad diseases like this in any numbers….Retroviruses have the capacity to impair immune systems in a subtle way”. - “Grey” Information about ME/CFS http://tinyurl.com/6xrk9x8 Invest in ME (Charity Nr. 1114035) Canadian Guidelines Invest in ME are the UK distributors for the Canadian Guidelines. Described even by NICE as “the most stringent” guidelines available these are proper, up-to-date clinical guidelines which can also be used as a base for research criteria. Findings from the study by Leonard A. Jason PhD (Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome) indicated that the Canadian criteria captured many of the cardiopulmonary and neurological abnormalities, which were not currently assessed by the Fukuda criteria. The Canadian criteria also selected cases with 'less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms' and individuals selected by these criteria were significantly different from psychiatric controls with CFS. The Canadian Guidelines provide a means for clearly diagnosing ME and were developed specifically for that purpose. They are an internationally accepted set of guidelines for which many in the ME community have been campaigning to be adopted as the standard set of guidelines for diagnosing ME. www.investinme.org Page 9/58
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