Journal of IiME Volume 1 Issue 2 www.investinme.org The PACE TRIALS (continued) Since Professor Cheney has shown that in ME/CFS patients, cardiac output struggles to meet metabolic demand, how can forced aerobic exercise which forms a major part of the MRC PACE and FINE “rehabilitation” trials help such patients remain as functional as possible? In the light of the Peckerman et al paper that was published in 2003, are the psychiatrists and their peer reviewers at the MRC who approved the PACE trial protocol still convinced that these trials (and the exercise regimes to be meted out by the new Centres) pose no harm for those with ME/CFS? Perhaps they are content to rely on the certainty that they themselves can never be held accountable for any harm to any patient because all participants must sign a compulsory waiver which means that no participant can ever pursue any claim for medical negligence or damages? Since Professor Cheney has shown that in ME/CFS patients, cardiac output struggles to meet metabolic demand, how can forced aerobic exercise which forms a major part of the MRC PACE and FINE “rehabilitation” trials help such patients remain as functional as possible? Concern that the Principal Investigators of the MRC PACE and FINE trials repeatedly reject published evidence of biomarkers of ME/CFS ME Story Since there is such lack of awareness, no exposure in the media and no public consciousness about ME, I find it very frustrating to have to continually explain myself. Even if some people understand and believe I have a real physical illness, I feel that people have a nagging belief that there may be a psychiatric component to it. Due to fear of being misunderstood, I feel that the less I explain my situation the better off I am. However, since I am either unemployed or a part-time worker, it's embarrassing not to have a "suitable" explanation for being off work. I hate to think that people might consider me a layabout or an idler. You have to have ME to even start to understand and appreciate the constant struggle sufferers face if not each day, most days. -Rebecca (pwme from Malta) The psychiatric lobby repeatedly asserts that there is no single, definitive biomarker for “CFS/ME”, yet they themselves are the very people who are instrumental in preventing the research in the UK that would be likely to demonstrate such a biomarker. Even when potential biomarkers are demonstrated by means of non-MRC funding, for example, the finding by Kennedy et al from Dundee of raised levels of isoprostanes that precisely correlate with ME/CFS patients’ symptoms – a laboratory finding that is unique to ME/CFS (Free Radical Biology & Medicine 2005:39:584-589). Other useful biomarkers already exist, including hsCRP (high sensitivity C-reactive protein, a well-established marker of inflammation) and low NK (natural killer) cells, but the psychiatric lobby will not accept such compelling findings as evidence that their own beliefs about the nature of “CFS/ME” are erroneous. Concern about the uncritical acceptance of the “evidence” for the alleged effectiveness of CBT/GET The Systematic Review from the Centre for Reviews and Dissemination (CRD) has been exposed in the Hooper & Reid Review (mentioned above) and this evidence has been submitted to the MRC. It is beyond belief that the MRC continues to condone the acceptance of such a flawed “evidence-base” for the basis of the PACE and FINE trials, or that the Data Monitoring and Ethics Committee apparently remains unaware of (or uncaring about) this evidence. The Countess of Mar was so concerned at the damaging and destructive influence of the Wessely School that she requested a meeting with Professor Blakemore. This took place at the House of Lords on 20th April 2004 and lasted for two hours. Earl (Freddie) Howe was also present. Invest in ME Charity Nr 1114035 (continued on page 66) Page 65/72
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