Journal of IiME Volume 1 Issue 1 ME News from Around Europe (continued) Wasn’t that a headline of “The Economist” some years ago? Referring to the economic situation the magazine certainly didn’t think of the situation of people with ME/CFS in Germany. Though there’s said to be a slight upswing now, “The Economist’s” description still applies to the health care provisions for people with ME/CFS. They are more or less non existent. Germany is – compared to the UK – indeed the sick man of Europe. From our point of view the establishment of 50 CNCCs and LMDTs for England alone is a great success. The public awareness seems to be much more advanced than over here. We admire your determination, resilience and efficiency by which you have achieved this. From our point of view all that is the result of years of tenacious work of hundreds of active people who did not allow themselves to be deterred by all the obstacles they met on their way to a better care for people with ME/CFS. In a way you are our great role model when it comes to the situation of people with ME/CFS – in spite of all shortcomings and tragic cases like that of Sophia Mirza and others who died or are treated badly. Here in Germany the situation is by far not as advanced. There isn’t a single clinic which is specialised in ME/CFS. People are more or less left on their own and depend on their GPs. Only a handful of physicians are interested in the subject and care for people with ME/CFS, among them unfortunately also some quacks and cutthroats. Those who do serious work keep themselves in the hiding because otherwise they would be swamped with desperate and extremely needy people, searching for help and support. However, the patients sometimes have GPs who are sympathetic and willing to support them though their knowledge of ME/CFS mostly is quite limited. The physicians themselves are in a fix because there is no structure like a CFS society for physicians, no advanced training or other provisions where they can get information. Open-minded GPs read the information which is distributed via the national charity Fatigatio or websites like www.cfs-aktuell.de or www.cfs-portal.de . Germany the sick man of Europe? Thus the majority of the 250.000 or 300.000 sufferers in Germany do not even have a diagnosis. Those who suspect having ME/CFS or whose GPs assume this might be the case don’t have a place where to go and confirm or exclude the diagnosis. There is no place where they can get a proper advice in medical, social or legal matters. Most people have difficulties to get incapacity benefits on the basis of having ME/CFS. Yet this is not a “recognised” diagnosis but things are gradually changing. The vast majority of sufferers still end up in a psychiatric ward or in the practice of a psychologist or psychiatrist – getting a psychological or psychiatric “diagnosis”. More often than not incapacity benefits are paid on grounds of such a diagnosis and people often accept it with resistance because they have no choice. The psychosomatic health care provisions in Germany are quite good and they serve as some kind of waste disposal for all diseases which the physicians are not familiar with or cannot diagnose. Small wonder, that almost all ME/CFS patients are given a psychiatric diagnosis, leaving them in an even more desperate situation. They are told they'd have a depression, a psychosomatic or somatoform disorder (meaning it only looks like a somatic disease but in reality is all in the mind), a minor and insignificant functional disease. In Germany ME/CFS is mostly considered to be a functional somatic syndrome, i.e. a more or less psychiatric disease. Only recently (in February 2007) some psychiatrists published an article in “The Lancet” titled “Management of functional somatic syndromes” (by Peter Henningsen, Herzog), Stephan in which completely ignored. There is one national charity for people with Me/CFS founded in 1993 with the name "Fatigatio e.V.". Of course, the few people who run the charity cannot come up with the demand. The charity does not have the necessary resources, neither financially nor personally. There are also some local self-help groups, however, with little influence on the overall situation. Yet, there are more and more physicians who say "Oh yes, I've heard about this," and who take matters seriously. (Continued on page 37) Invest in ME Charity Nr 1114035 www.investinme.org the biomedical Zipfel, Wolfgang research 36 is
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