Journal of IiME Volume 4 Issue 1 www.investinme.org Around Europe – European ME Alliance fund and most insurance companies don’t pay for supplements and other helpful medication like antioxidants etc. There is, however, a very small group of physicians and researchers, organised in the “European Academy for Environmental Medicine” (EUROPAEM, see http://www.europaem.de) who try to withstand to the mainstream medical system and to spread their expertise on multisystem disorders like ME/CFS and related disorders. Only recently they had their annual conference in Wuerzburg (23 – 25 April) which conveyed not only a wealth of information but also hope for a better future – there are, after all, sensible and intelligent doctors who fight for us. Research ME STORY Apart from the physicians and researchers, organised in the above mentioned EUROPAEM, there’s a famous clinic in Berlin, the Charité Berlin Mitte, which is doing a little research on EBVassociated ME/CFS. The only funding they have is 20.000Euro from Fatigatio, an amount which is nothing more but a drop in the ocean. Prof. Scheibenbogen will present the results of her work on our International ME/CFS Conference in September in Dortmund. They neither have the necessary funding nor the personnel to start studies or offer treatment approaches. Moreover, Prof. Scheibenbogen is cooperating with some researchers at the Robert Koch Institute, the leading state funded medical research institute in Germany which is comparable to the MRC in Great Britain. The results of their search for XMRV in people with ME/CFS was presented at the Centennial Retrovirus Meeting in Prague (29 April – 4 May 2010). Media reports Several articles and TV reports on ME/CFS published within the last 12 months were quite different in quality, yet the number of good reports is increasing. While the renowned (or notorious…) weekly magazine “DER SPIEGEL” repeated only in March this year the old rubbish of CBT/GET and conveyed the message that it were only up to the patients whether they’ become healthy again or stay ill, the reputable weekly “DIE ZEIT” published a very balanced and well informed article. Several TV reports, though short, depicted the desperate situation of the patients appropriately. Conclusion: there’s a lot of work ahead to change Invest in ME (Charity Nr. 1114035) For a significant percentage of us deterioration is a one-way street. The NHS should aim to avoid making people more ill. In the clinics and hospitals in which I have spent time the most respect and consideration was always shown to the person most likely to die or most visibly impaired. M.E. was not seen as life- threatening and not considered to be a `serious' illness. In 1999 Dr. David Bell, a researcher and experienced clinician with a vast caseload of field experience in M.E. gave a lecture at Christie's in London entitled: "M.E. and the Autonomic System". He stated that: "People with M.E. have less activity than people, dying of HIV/AIDS, who are within two months of death." Dr. Bell was explaining that quite moderately affected M.E. patients are less able and active than terminally ill AIDS patients. The NHS needs to be educated about this patient group: A group of people who are living at a lower level of functioning than the terminally ill but who must continue in this way for years, often decades. For the severely affected M.E. sufferer management of one's health and care at a daily level is often an unsuccessfully waged battle. It is impossible to stabilise one's condition and therefore deterioration is ongoing - A person with ME Page 41/56 the situation of ME/CFS patients in Germany for the better, and we desperately need our international network to achieve some progress. European ME Alliance www.euro-me.org

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