Journal of IiME Volume 1 Issue 2 www.investinme.org From the Chairman of Invest in ME (continued) families in this country. IiME was also recently asked by the BBC Radio 4 Programme “You and Yours” to supply information for their series of programs on ME. So education is still a huge priority and Invest in ME, and other groups, continue to perform work in this area - much of it unpublished - but with the intention of making ME a mainstream illness and deserving of educated and sufficient debate. We are determined that what happened to Sophia Mirza, who died, “… as a result of acute renal failure due to dehydration arising as a result of Chronic Fatigue Syndrome (M.E.)” must never be allowed to happen again. We shall endeavour to continue the campaign to educate and lobby and improve the lives of people with ME and their carers. Invest in ME has taken over the distribution of the Canadian Guidelines in the UK. Together with both 2007 and 2006 conference DVD sets, and the Quotable Quotes on ME booklet, we have a useful range of educational material for healthcare staff, politicians, media and, of course, ME patient groups and pwme and their carers. Our 52-page response to the NICE guidelines has also been added to our web site. We hope the Journal of IiME will also continue to assist in this area by providing a platform, as does the IiME conference, for biomedical researchers and clinicians to provide details of their research and work. It will also continue to offer real life experiences from those who have to deal with this illness on a daily basis – a fact to which too many politicians and organisations still remain indifferent. As IiME plan for the May 2008 conference we look forward to working together with those interested in campaigning for funding of biomedical research into ME – the only sure way to provide a cure for this neurological illness. We wish everyone a pleasant autumn and hope and believe that progress will continue in providing a future treatment/cure for ME. Best Wishes Kathleen McCall A Arr tt ii cc ll eess ffoorr tthhee JJoouurrnnaa ll oo ff II iiMMEE Invest in ME welcomes articles for inclusion in the Journal, especially research papers on ME. Our aim is to provide as much information, fact and science regarding myalgic encephalomyelitis in the hope that it will encourage research, funding and discussion of ME and provide more accurate perception on this illness. Articles for consideration should preferably be in MS Word. Please send any articles to jiime@investinme.org and provide a contact number and full address details. Invest in ME Charity Nr 1114035 The NICE Guidelines “By pre-determining the result based on its requirements to view this illness as a broad chronic fatigue illness NICE has failed to grasp the reality, failed to analyse and use proper research, failed to respond to patients’ demands and requirements and produced a document that will continue to allow this illness to be blended into a nebulous fatigue syndrome which only benefits psychiatrists interested in funding of their projects and other organisations who depend for their existence on paying members.” - IiME Comment on the NICE Guidelines for CFS/ME (Page 44) Facts About ME The textbook used to train NHS clinicians (and which is likely to be on the desk of every GP in the UK - Clinical Medicine: Kumar and Clark) categorises CFS/ME in the mental health section under ”Functional or Psychosomatic Disorders” - despite the fact that the World Health Organisation has recognised ME as a neurological illness and that this recognition is also officially supported by the British government. Facts About IiME The IiME website was set up in late 2005. The aim is to provide news, educational material, research information and stories of ME. The IiME website usage has steadily grown with up to 60,000 visits per month from around the world. www.investinme.org Page 4/72

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