Journal of IiMER Consideration ought to be made for a government inquiry, or parliamentary committee to scrutinise the conduct of the MRC with regards to its policies, research grant applications and grants for ME made over the last 13 years since the CMO’s report was made. We are sure none of this will happen. The establishment looks after its own. But it seems impossible to see how, after the way the MRC has operated over the last ten years, ME patients or carers or ME patient groups or ME charities could possibly have any faith in an organisation such as this unless it is reformed. We fail to see how any healthcare professional or researcher can have faith in the Lancet until the PACE Trial is recognised for the farce that it has become. Professor Jonathan Edwards wrote the following “The PACE trial of cognitive behavioural therapy and graded exercise therapy for chronic fatigue syndrome/myalgic encephalomyelitis has raised serious questions about research methodology. An editorial article by Geraghty gives a fair account of the problems involved, if anything understating the case. The response by White et al. fails to address the key design flaw, of an unblinded study with subjective outcome measures, apparently demonstrating a lack of understanding of basic trial design requirements. The failure of the academic community to recognise the weakness of trials of this type suggests that a major overhaul of quality control is needed.” http://journals.sagepub.com/doi/full/10.1177/1 359105317700886 References White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, et al. (2011) Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377: 823–836. doi: 10.1016/s01406736(11)60096-2 http://www.virology.ws/2015/10/21/trial-by-error-i/ http://www.virology.ws/2015/10/22/trial-by-error-ii/ http://www.virology.ws/2015/10/23/trial-by-error-iii/ http://www.virology.ws/2015/10/30/pace-trialinvestigators-respond-to-david-tuller/ http://www.virology.ws/2015/10/30/david-tullerresponds-to-the-pace-investigators/ http://www.virology.ws/2015/11/09/trial-by-errorcontinued-why-has-the-pace-studys-sister-trial-beendisappeared-and-forgotten/ http://www.telegraph.co.uk/news/health/11959193/C hronic-Fatigue-Syndrome-sufferers-can-overcomesymptoms-of-ME-with-positive-thinking-andexercise.html https://ico.org.uk/media/action-weve-taken/decisionnotices/2015/1560081/fs_50565190.pdf Professor James Coyne http://blogs.plos.org/mindthebrain/2015/10/29/unint erpretable-fatalflaws-in-pace-chronic-fatiguesyndrome-follow-up-study/http://impact.ref.ac.uk/casestudies2/refservice.svc/ GetCaseStudyPDF/18135 http://impact.ref.ac.uk/casestudies2/refservice.svc/ GetCaseStudyPDF/41185 http://impact.ref.ac.uk/casestudies2/refservice.svc/ GetCaseStudyPDF/17492 http://impact.ref.ac.uk/casestudies2/refservice.svc/ GetCaseStudyPDF/23887 “An open letter to Dr. Richard Horton and The Lancet"http://www.virology.ws/2015/11/13/an-openletter-to-dr-richard-horton-and-the-lancet www.investinme.org Page 44 of 82
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