Journal of IiME Volume 1 Issue 1 ME in Germany – continued from page 36) After all, campaigns like SPARK in the USA and the good work that is done in Great Britain and all over the world has some trickle down effect. Looking to the UK and your achievements provides us hope and confidence that we will one day no longer be forced to living in the sticks. All in all you can see that we in Germany are lagging behind your developments at least 15 or 20 years! By Regina Clos Regina Clos has worked for some years for the national charity Fatigatio and is now running a German spoken website ( www.cfs-aktuell.de ) with up-to-date information on ME/CFS and many translations of articles and booklets published in Great Britain, Australia, the USA and Canada. She is a sufferer herself for more than 20 years and became a translator after she had to give up her job as a teacher for handicapped children. Sweden In Sweden, ME is largely unknown by doctors as well as the general public. To the extent it is discussed, it is under the name of “Kroniskt trötthetssyndrom”, which literally translates as “Chronic tiredness (not fatigue!) syndrome”. There are no ME specialists available for diagnostic evaluation or treatment management. The ME clinic at Huddinge Hospital in Stockholm was closed in 2000. Some patients have been diagnosed at the Gottfries Clinic in Gothenburg which specializes in Fibromyalgia and CFS, but getting a referral can be difficult or impossible depending on where in the country you live. This clinic is also under the threat of losing public funding and being forced to close down. There are a few individual doctors with some knowledge of ME, and some GPs who are willing to learn, but for the most part patients are left to GPs that range from ignorant to downright insulting. The view that all forms of chronic fatigue equal a somatoform syndrome is widespread, and reinforced through articles in the medical union’s member journal, “Läkartidningen”. We believe ME is tremendously under diagnosed in Sweden. The code G93.3 is virtually never used, and patients with this diagnosis code may have it changed by a new doctor without explanation. Most likely, sufferers are instead diagnosed with “burn-out syndrome” (or “exhaustion depression”), as this was a very common problem in Sweden particularly during Invest in ME Charity Nr 1114035 the 1990’s. The obvious problem with this misdiagnosis is that it leads to unreasonable expectations on recovery speed and capacity for physical activity. With time, when the patients don’t improve and claim to be unable to exercise, they are met with increasing disbelief from doctors and others. There is also a strong tendency in Sweden at the moment to question the “overuse” of sickness benefits and reduce the number of claimants by rejecting more claims. As in many other countries, special insurance doctors second-guess the patient’s own doctor, and some claim illnesses such as ME and Fibromyalgia don’t exist. This puts many patients in a desperate financial situation. Some fall between the chairs when they are considered too healthy for sickness benefits, but too sick to register as unemployed and claim unemployment benefits. The research being carried out has mostly focussed on the psychosomatic angle, and included larger groups of chronically tired patients who do not fulfil stricter ME criteria. However, Professor Gottfries and his colleagues in Gothenburg have conducted a very promising trial using a staphylococcus vaccine. 2/3 of patients experienced positive effects, especially on immune symptoms and recurring infections. Many were able to return to work or increase the number of hours worked, and generally increase their quality of life. Unfortunately, this research has now been stopped due to manufacturing problems with the vaccine, and patients doing well on the treatment for several years are being forced back to a life of illness as the supplies run out. The national patients’ organisation, RME, has approximately 370 members, and is working with very limited resources to improve the situation for sufferers and increase awareness. Some regional groups have been making limited progress, but it’s very much a process of one step forward and two steps back. Anna Fenander, RME Stockholm Facts About ME ME is now 5 times more prevalent in the UK than is HIV/AIDS. 37 www.investinme.org
38 Publizr Home