Journal of IiME Volume 2 Issue 2 www.investinme.org The European ME Alliance The European ME Alliance is a collaboration of ME organisations within Europe who have the common aim of promoting biomedical research into Myalgic Encephalomyelitis (known as ME or ME/CFS) and increasing awareness of this debilitating neurological illness. The European ME Alliance (EMEA) has the following objectives – • ME is a very serious illness even in relatively mild cases. Research has found that ME-patients experience loss of function that is devastating and comparable to AIDS and late-stage cancer. To establish correct recognition of myalgic encephalomyelitis as an organic illness requiring biomedical research to treat and cure • • To establish correct diagnosis of patients To establish specialised biomedical centres for education/treatment/cures Myalgic Encephalomyelitis is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3). The varying symptoms experienced by many severe ME sufferers may include: - - post-exertional malaise and loss of muscle power with delayed and prolonged recovery - - - - - - - - - - - - general chronic weakness of limbs neurological disturbances cognitive problems such as memory loss & concentration difficulties problems with balance and fine motor control muscle pain malaise hypersensitivity sleep & temperature disturbance cardiovascular symptoms digestive disturbances visual problems vocal/muscular limitations. Invest in ME (Charity Nr. 1114035) ME has a prevalence of 0.4% of the population with many of the sufferers being children. It is the major cause for long term absence from school for children. In the UK ME is five times more prevalent than HIV/AIDS. 25% of people diagnosed with ME may be severely affected, house-bound, often bedbound, left with little help from the medical community, often made to struggle to obtain benefits and left to an uncertain and debilitating future. ME is estimated to cost European economies billions of Euros every year. ME is a multi-system illness and distinct sub groups have been identified and some treatments have been shown to be effective. To establish more comprehensive treatments and cures for these and other sub groups requires investment in biomedical research. Yet no public funding of biomedical research is currently taking place in Europe so biomedical research projects are funded solely by the private grants to individual researchers and from ME support groups and individuals. With little funding of biomedical research into ME within Europe the EMEA are hoping to attract more support for research activities and hope to convince governments to recognize the necessity for a European biomedical research strategy to cure this illness. ME needs more awareness from the public, politicians and healthcare staff. (continued on page 16) Page 15/74

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