Journal of IiME Volume 2 Issue 1 ME News from Around Europe from Sweden Legislative Victory in Sweden for People with ME/CFS In Sweden, there is still an abysmal lack of specialist care (or any care for that matter) for ME/CFS-patients. However, there is some good news to report. We gained some attention (and many new members) last year when a well-known MP spoke of her illness in an evening newspaper. ME/CFS, like many other illnesses, is still in practice an illness of criteria, in spite of progress in research done in recent years. This has lead physicians and, even more so, representatives of the Social Security system in Sweden to wrongly assume, that the patients are fit and able to work. Even some of those who are severely afflicted have been refused Social Security benefits, because of lack of objective, measurable signs of their illness. “You can be cured of ME/CFS if you jog in the woods 10 kms, 3 times a week”. In a regional law court, the local association RME Västernorrland recently reached a successful verdict for one of its members. It states that the grade of disability of a person should be the ground on which compensation from Social Security should be based, regardless of objective medical findings. Although this verdict is not of precedent character, RME Sweden still considers it to be a great victory, bringing us hope for the future. More news from Sweden: In 2007, RME, the Association for ME/CFS patients in Sweden, carried out a questionnaire survey amongst their members aiming to assess and elucidate the current situation for ME/CFS patients in Sweden. The survey comprised 142 questions. The aim of the survey is to increase knowledge about ME/CFS and to improve medical care for this group of patients. We are currently presenting the results of our survey to political, social and medical authorities. 210 out of 380 members filled out the questionnaire, i.e. 55 %. 183 of these fulfil the Canadian criteria for ME/CFS. 178 have been given the diagnosis. 136 fell ill after infection. been most difficult with having this illness. Here are three typical answers: “Being so exhausted that I just can’t stand upright or feel any interest in what is going on around me. The inability to think clearly or concentrate on anything”. “The physical “restrictions” because of exhaustion, the social isolation due to lack of energy”. “The attitude of authorities, medical service providers and people around me in general. Suspicion, Invest in ME (Charity Nr. 1114035) making light of the illness, questioning it and the constant struggle to try to be taken seriously and get adequate help”. 33% of the participants in the Survey were told by physicians that the illness does not exist, in spite of the fact that most of our members were diagnosed with the illness by (other) physicians! More than 33% have heard comments such as: “If you have ME/CFS we don’t take any tests”. “That illness is not listed anywhere”. “If one wants to get ones´ health back one does”. “The illness is not considered or regarded as a diagnosis”. “You can be cured of ME/CFS if you jog in the woods 10 kms, 3 times a week”. “It is not an illness but an imagined syndrome”. Etc. We are hoping that this survey will help us change the general attitude toward ME/CFS-patients in Sweden. In Stockholm, the regional health care authority has commissioned a report into the situation for patients with ME/CFS. After several years delay this report is now to be presented at the end of May. Two patients' representatives have been included in the reference group connected to the report, along with a number of health care professionals with varying degrees of understanding of the illness. At this point we don't know the outcome of this report, but we are hoping for the best. After the report comes out, the county parliament will probably address a motion to reinstate a specialist ME/CFS clinic. This is important for all of the country, because where Stockholm leads other regions may follow. On May 28th 2008, RME Stockholm are arranging an event on the theme of providing medical care for patients with ME/CFS. The main speaker will be Dr. Daniel Peterson, and we will also hear from two Swedish physicians (Prof. Birgitta Evengård and Dr. Olof Zachrisson) as well as leading regional healthcare politicians. This will be a well-timed event which will tie together the healthcare report, the RME patient survey, and the desperate need for medical care, and we plan to make a big fuss in the media! (If anyone wants to help out, feel free to contact us at stockholm@rme.nu) Another local association, RME Göteborg, is planning two seminars in the autumn of 2008 – one for physicians and other health care personnel and one for ME/CFS-patients in the region. So far we are happy to note that two physicians, who are both well known in Sweden, have accepted our invitation, namely Dr. Paul Kavli, Norway, and Dr. Daniel Peterson, Nevada, USA. We hope that we will be able to carry this out in a successful way and that it will lead to positive results for us, who have this debilitating syndrome. This article was supplied by RME— the Association for ME/CFS patients in Sweden. Page 17/34 www.investinme.org
18 Publizr Home