Journal of IiME Volume 4 Issue 1 www.investinme.org Around Europe – European ME Alliance NEWS FROM GERMANY New ME/CFS Alliance in Germany Several groups advocating for people with ME/CFS, including the national charity Fatigatio e.V. formed a new national alliance, the Bündnis ME/CFS. Its members want to join forces to have more clout when calling for the recognition of ME/CFS by German health care providers, for research and special treatment facilities for people with ME/CFS. Its first activity was a demonstration in front of the venue of the annual general meeting of the main organisation of German doctors, the “Deutsche Ärztetag” in Dresden this year – on May 12. The alliance prepared big banners with photos of people with ME/CFS – with the aim to “Give ME/CFS a face”. We published an open letter, sent it to the federal chancellor, the minister of health and other top politicians, a press release and printed a short booklet to provide basic information for physicians – on the cover “30 of 300.000 faces of ME/CFS”. For photos and results of this demonstration have a look on www.cfsaktuell.de or on www.fatigatio.de New ME/CFS Foundation to be established On the basis of her professional expertise in banking business Nicole Krüger, a young woman, suffering from ME/CFS, is about to establish a foundation for neuro-immune diseases, mainly ME/CFS. We were so impressed by IiME’s book “Lost Voices” we decided to call it “Lost Voices Stiftung” because the foundation’s mission is to give a voice to those unheard and unseen by society, by health care professionals and often even by friends and family. We are still in the process of collecting an amount of money required for the registration of a foundation and to satisfy all the red tape, but we are optimistic to have overcome all these hurdles within the next two years. Invest in ME (Charity Nr. 1114035) Hardly any treatment options for patients Still the situation in Germany is quite bad and progress is coming very slowly: only a few physicians are experts in treating multisystem disorders like ME/CFS, and they are inundated with patients so that some of them take refuge in only treating private patients. The majority of patients have no specialised treatment at all and try to get along with their often badly informed GPs and some kind of “home made” treatment, i.e. they draw some information on treatment approaches from the Internet or from Fatigatio’s publications. There’s just one clinic in the south of Germany (Spezialklinik Neukirchen) who may offer some treatment for people with ME/CFS but the waiting list is very long. Yet this clinic is not prepared to care for severely ill people, they simply don’t have the necessary equipment and provisions. There are no other clinics or centres of excellence for people with ME/CFS, and the majority of the doctors still follow our official treatment guidelines (“AWMFLeitlinien”) which are dominated by the “biopsychosocial” model. These guidelines are more or less identical to the British NICE guidelines. The standard treatment is based on the assumption that ME/CFS is a somatoform disorder which is best treated with CBT and GET. Most patients are sent or even forced to go to a “Psychosomatic Clinic” and are forced to “activate” themselves, rendering them more ill than ever. More often than not people get a psychiatric diagnosis (depression, somatoform disorder, all kinds of unproven “diagnoses”), are declared as physically healthy and sent back to the work market. Because they are simply too ill to come up with the demands of a job, they remain unemployed and, consequently, they have to live on “Hartz 4” or other minor social benefits. So the majority of the German patients is very sick and impoverished, with no appropriate treatment and too poor to pay for supplements and other helpful medication. The compulsory health insurance Page 40/56

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