Journal of IiME Volume 1 Issue 1 Professor Malcolm Hooper (continued from page 3) A catalogue of vested interests has been exposed which has given rise to the misleading judgements of the insurance industry and their advisors as well as the lack of the proper provision of appropriate benefits. The implications of the Inquiry for NICE and the MRC, who have become party to the machinations of the psychiatric lobby, are still being worked through. An essential requirement for future progress is the need for all organisations concerned with ME-CFS to provide a coherent and unified approach to the illness and not to be distracted by the large sums of money being put into the current clinics that have been predicated on ME-CFS as a psychiatric illness. Together we shall succeed but divided we shall fail. Finally there is the growing international collaboration that has now become apparent and provides grounds for rapid advancement in understanding ME. Canada, USA, Australia and New Zealand, and Norway have all made big strides forward. We have much to learn from each other and contribute to each others activities. There is much to celebrate, there are real grounds for hope, and future effective actions can be recognised and agreed. Invest in ME Invest in ME (IiME) was formed by parents of children with ME and sufferers in September 2005 and registered as a UK charity in May 2006. The day to day running of the charity takes place in Hampshire and Norfolk. IiME was formed to break with the established way of looking at ME. We are aiming to change positively the situation for people with ME and their families and carers. IiME has no paying members and no salaried staff – all of our work is voluntary. During 2006 we established and strengthened regional and international contacts which we will develop in the future. Our campaigning for more informed education of doctors and for appropriate funding for biomedical research into ME has led to a busy year in which we have spoken with the Deputy Chief Medical Officer, the head of the MRC and numerous politicians. As part of our campaigning we have responded to the proposed NICE guidelines which were, in our opinion, unfit for purpose; attended and given evidence to the Gibson report into M.E. which was published in November 2006; commented on the inadequate and misinformed NHS Plus Guidance leaflet and made representations to the Department of Work and Pensions on their guidance for M.E. and benefits. The media have an important role to play in our efforts to raise awareness and change attitudes. To this end we have continued to build a good working relationship with many journalists, writers and broadcasters. This has been complemented by responding vigorously whenever possible to articles in the press. During the last year we have attended the inquest of Sophia Mirza who died, “… as a result of acute renal failure due to dehydration arising as a result of Chronic Fatigue Syndrome (M.E.)”. Her mother has lodged complaints with the GMC and the Social Services involved in Sophia’s case and we will notify the outcome as soon as we can. We are determined that what happened to Sophia must never be allowed to happen again. Invest In ME will continue to campaign during 2007 and will build on the close working relationships we have with groups and clinicians around the world, as well as continuing to cooperate with ME Research UK in our joint endeavour to improve the lives of people with ME. Invest in ME Charity Nr 1114035 www.investinme.org IiME LOGO What’s in a logo? The IiME Logo is based on a double helix – indicating our firm commitment to treating myalgic encephalomyelitis as the biological illness it is and enforcing our view that only biomedical research will bring about a cure for ME. 4
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