Journal of IiME Volume 1 Issue 2 Inside This Issue 3 From the Chairman 5 Comprehensive Treatments of CFS/ME with IVIG 7 CFS as Major Cause of CKD 8 Introduction and Perspectives for Diagnosis of CFS 19 Identification of Differential Genetic Profiles in Severe Forms of FM and CFS in the UK population 21 Gene therapy for mitochondrial dysfunctions using optimized mRNA transport to the mitochondrial surface 30 Chronic fatigue Syndrome after Q fever 35 The reality and nature of ME/CFS 38 Children and Young people with ME – A Personal Overview of the Last 20 Years 42 ME Story 44 IiME Comment: NICE Guidelines 48 The PACE Trial 68 Attitudes of Mental health Practitioners to the Hippocratoc Oath 69 The IiME International ME/CFS Conference 2008 71 Educational Material from IiME www.investinme.org From the Chairman of Invest in ME Welcome to the second Journal of Invest in ME – a combination of research, information, news, stories and other articles relating to myalgic encephalomyelitis. Our first version of the Journal appeared in the delegates’ conference pack at our International conference in London in May 2007. The conference brought together some of the foremost experts on ME and representatives from ME patient groups from all over the UK and Europe. We believe that everyone left not only with an enhanced knowledge gained from the conference but also with renewed hope for the future treatment and possible cure for myalgic encephalomyelitis. As Professor Malcolm Hooper commented in his introduction to the Issue 1 of the Journal - “achievements, hope, and future actions were brought together in this conference”. The breadth of knowledge, science and experience regarding ME, as discussed and presented at the conference, was not only impressive but also exciting. There are grounds for hope that a treatment and cure are on their way. We are glad to see that the many contacts which were established at the conference have continued. To see renowned experts on ME discussing with each other and forming or re-enforcing collaborative efforts was reward enough for hosting the conference. To turn into reality our efforts to form a world alliance of campaigning ME Support organisations was also justification for the conference. The presentations from our distinguished speakers displayed an amazing amount of knowledge regarding the organic nature of myalgic encephalomyelitis. Invest in ME made the decision to fund the DVD of the conference in order that we had a permanent record of the events of that day and of the impressive science which exists already. The conference DVDs have been sold in twenty countries and testify to the need for education about ME. They are an educational tool for physicians to learn about ME. As with many illnesses to which the government gives insufficient attention, and where some existing organisations seemingly fail to represent patients properly, the patients and carers are those who learn most about the illness, out of necessity. It is they who are forced into lobbying for proper attention. Invest in ME was created through such a state of affairs. Our aim is, where possible, to provide information and educational material either free or at cost price - our recent London conference being an example of that where pwme and their carers could attend for a basic price which covered just food and refreshments. Lobbying can work. The recent case of the GMC attempting to discipline Dr. Sarah Myhill is, perhaps, a case in point. Lobbying by patient groups and patients has perhaps forced the GMC to rethink their strange tactics. Dr. Myhill’s case proves how out of touch an established organisation can be with the needs and welfare of patients and their families. Email: info@investinme.org Similarly NICE has shown itself to be an organisation unwilling to progress the treatment and perception of ME. Invest in ME have written to the current minister responsible for ME at the DoH, Mrs. Ann Keen, requesting a meeting with representatives from ME patient groups. The reply was the standard template from the DoH showing both ignorance and apathy to the plight of ME patients and Invest in ME Charity Nr 1114035 Page 3/72
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