Journal of IiMER I I M E C 1 2: Marking TWELVE Years in Creating a Vision of Excellence for Research into ME Conference welcome from Chairman Kathleen McCall A nother year and a new conference. Invest in ME Research is an independent UK charity whose objectives are to initiate, maintain and augment a strategy of high-quality biomedical research into Myalgic Encephalomyelitis (ME), to provide and promote better education about ME, and to raise awareness of the effects of the disease on patients and families. Finding, facilitating and funding a strategy of biomedical research into ME is, we believe, the only way to make any real and lasting impact on the lives of those affected by this disease. We are a small charity but with a growing number of supporters who have big hearts - and a determination to get the best possible research to be carried out to find the cause of myalgic encephalomyelitis and develop treatments. The charity is run by volunteers - patients or parents of children with ME and supported by patients, family, friends, and others who are determined to change the prospects for people with this disease. We do not receive and have never received funding from government or government organisations and our research Colloquiums and public Conferences are funded by the charity itself. The charity decided early on that biomedical research into ME was crucial in order to make progress in treating this disease. We also decided that education of healthcare staff, the media, www.investinme.org government departments, patient groups and patients was to be a priority. The charity commits itself to a strong stance against deceptive practices, corrupt or flawed policies toward ME and to disingenuous posturing from those seeking to influence governments, the media or even patients. The charity has always spoken out strongly against the flawed and null PACE Trial. However, we have also engaged with the government, Department of Health, Medical Research Council, Chief Medical Officers and, as part of the European ME Alliance (EMEA) have been working closely with European colleagues to make progress in Europe. We have also participated in recent NINDS discussions organised by the NIH. Almost twelve years on from when Kathleen McCall formed the organisation that became Invest in ME Research the charity has an optimism about the future and a continuing determination to force change and create a foundation of biomedical research in Europe that will finally Page 4 of 82
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