Journal of IiME Volume 1 Issue 2 www.investinme.org The PACE TRIALS (continued) closer scrutiny. He is the son-in-law of Dr Elizabeth Dowsett, who was formerly Medical Advisor to and President of the ME Association and who is currently Medical Advisor to the 25% ME Group for the Severely Affected. Correspondence exists between an ME/CFS sufferer and Dr Johnson himself, but which also involves Dr Anthony C Peatfield, Head of MRC Corporate Governance and Policy. The correspondence arose from the MRC’s Biostatistical Unit’s progress report for the years 2001 to 2006 that was placed on the website of the MRC Biostatistics Unit (BSU), taken from the BSU’s Quinquennial Review of 2006. One part of the Quinquennial Review states: “Our influence on policy-makers has largely been indirect, through scientists' work on advisory committees, in leading editorials, in personal correspondence with Ministers, Chairs or Chief Executives (such as of Healthcare Commission or NICE), Chief Medical Officers and Chief Scientific Advisers, or through public dissemination when the media picks up on statistical or public health issues that our publications have highlighted. “The Unit's scientists must remain wary of patient-pressure groups. Tony Johnson's work on chronic fatigue syndrome (CFS), a most controversial area of medical research, has had to counter vitriolic articles and websites maintained by the more extreme charities and supported by some patient groups, journalists, Members of Parliament, and others, who have little time for research investigations”. This contention that “CFS” research is beset with vitriol and “extreme” charities was re-iterated by Johnson himself in his own Report within the Quinquennial Review; under “Chronic Fatigue Syndrome (CFS), with P White, T Chalder (London), M Sharpe (Edinburgh)”, Johnson’s Report stated: “CFS is currently the most controversial area of medical research and characterised by vitriolic articles and websites maintained by the more extreme charities supported by some patient groups, journalists, Members of Parliament, and others, who have little time for research investigations. In response to a DH (Department of Health) Directive, MRC called for grant proposals for investigations into CFS as a result of which two RCTs (PACE and FINE) were funded and have started despite active campaigns to halt them. I am part of the PACE study, a multi-centre study comparing cognitive behaviour therapy, graded exercise training, and pacing in addition to standardised specialist medical care (SSMC), with SSMC alone in 600 patients. I have been fully engaged in providing advice about design of PACE and I am a member of both Trial Management Group and Trial Steering Committee. I am not a PI (Principal Investigator) because of familial involvement with one of the charities, a perspective that has enabled me to play a vital role in ensuring that all involved in the PACE trial maintain absolute neutrality to all trial treatments in presentation, documentation and assessment”. (continued on page 52) Invest in ME Charity Nr 1114035 Page 51/72 ME STORY It seems psychiatrists and insurance companies hold a very firm grip of the Department of Health's approach to ME proving, perhaps, that ME treatment in Britain is dictated more by financial considerations rather than by medical or ethical ones. It is a shame that Britain must lag behind the rest of the international community, leaving young, talented people on incapacity benefit, when they could successfully be treated with antivirals and immune modulators as in other countries. While psychiatrists protect their academic careers rather than their patients, there will be more victims of ME like Sophia Mirza. Just how many psychiatrists want to do a squealy u-turn mid-career, hold up their hands, say 'we were wrong' and thereby relinquish research funding for psychiatry? None. They'd rather stay in denial and hold onto their academic careers by their fingernails at the cost of their patient's health. Just how many insurance companies want to pay out to ME patients when they can suggest the illness can be treated with mind over matter approaches that seem to cost the NHS very little? This is, of course, false economy: if ME patients were medically treated it would in fact save the government in costly CBT programmes, incapacity benefit and DLA. If ME patients were treated properly as in other countries like Canada, the insurance companies wouldn't shirk paying up because there wouldn't be the same volume of applications for medical retirement. This piece of commonsense evades the psychiatrists with a stake in receiving research funding. Well, I suppose it would. - Sarah(UK person with ME)

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