Journal of IiME Volume 5 Issue 1 (May 2011) For this issue of the Journal we have included some old and some new articles. With the misinformation about the PACE Trial which has been spread by establishment organisations and individuals, motivated by vested interests or ignorance, it is only right that we take articles from our web site which show the fallacy of the bogus science behind PACE. We have articles from Margaret Williams which show the disquiet behind how the PACE trial was instigated and also how the reporting on the poor results is spun into a positive message with the help of the Science Media Centre. Long time advocate Kevin Short, who famously took NICE to a judicial review regarding their ineffectual Clinical Guidelines for ME, has also written on PACE. From the USA patient advocate Chris Cairns has contributed our Letter from America article. Chris writes an illuminating blog which is mandatory reading for ME patients and others interested in what is really happening under the covers with the announcements, research and decisions being made in USA. Chirs Snell discusses the research at University of the Pacific which can use peak respiratory exchange ratio to measure post-exertional malaise and aid in identifying ME patients. There is already a great fund of knowledge available for the healthcare departments, organisations and staff to appreciate the multisystem nature of ME/CFS and the need to stay current with biomedical research data. The articles in JIiME, a small subset of the information which exists regarding ME, allow some of that to be seen. The research at the conference continues to echo the question of previous years – what would be possible if proper funding were available for a national or international strategy of biomedical research? At the conference there will be researchers, clinicians, nurses, patient groups and patients, advocates and, we always hope, a sprinkling of as many politicians, journalists and others whom Invest in ME self-fund to allow people to be Invest in ME (Charity Nr. 1114035) exposed to real science. The IiME conference provides not just a platform for proper, high-quality science – it allows also a platform for the hopes of millions of people around the world. Enjoy the Journal. Enjoy the conference. Clinical Trials Our theme for the conference is Clinical trials for ME – something which is now clearly needed. A clinical trial is a scientific research study in which patients participate to help physicians find new or better ways of treating patients. Normally a clinical trial tests a new drug or new medical intervention and its ultimate value in the prevention, diagnosis or treatment of a disease, disorder or illness. Now is the time to start some well controlled clinical trials into ME/CFS. For far too long patients have been left to manage their symptoms as best they can themselves, often left at the mercy of unregulated businesses promising cures at exorbitant costs and severely ill patients in hospital are often made worse rather than better by unhelpful beliefs about the nature of the disease held by healthcare staff. In a recent survey (Wojcik et al., doi:10.1016/j.jpsychores.2011.02.002) 84% of neurologists did not consider ME/CFS as a neurological illness – a finding which, if true, would categorically show how the misinformation and lack of proper education among the medical profession is costing lives. It also shows how inept and incompetent UK governments and medical organisations have been in regulating medical training, and how organisations such as the General Medical Council, the Royal Colleges of Physicians and Child Health have knowingly or unknowingly contributed to the mess around ME – something which benefits psychiatrists who maintain their status and funding but which does not serve patients. The Invest in ME conferences are aimed at correcting this misinformation. There have been very few controlled clinical Continued page 9 www.investinme.org Page 8/58

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