Journal of IiME Volume 1 Issue 1 Denmark The situation for ME/CFS patients in Denmark deplorable. Although the disease it is is officially accepted as a physical one, the health care community and the media treat like a psychological one. There are no governmentappointed specialists and there are very few doctors who believe the disease is real. Of these very few, we know for sure that two have been told by their hospital supervisors that they may no longer treat “that type of patient.” Given this environment, very few doctors dare to give the G93.3 diagnosis. Some patients have been forced to accept a F48 diagnosis in spite of the fact that no psychological illness was found just to get a much-needed pension. Needless to say, there are no hospitals or clinics that treat or monitor the disease. Only one study has ever been done about ME/CFS in Denmark: "Illness and disability in Danish CFS patients at diagnosis and 5-year follow-up" by Andersen, Permin and Albrecht. The 9-year follow-up paper is soon to be published. It because it shows that is an important study, “recovery and substantial improvement are uncommon” – around 6% - and that “good mental health does not predict improvement.” So although the patient’s mood improved over time as they learned to cope with their illness, their physical symptoms worsened. This should give the pushers of CBT-as-cure something to think about! Overall, ME/CFS patients in Denmark are horribly neglected and many have given up hope of ever being taken seriously by the Danish health care system. The hope of the Danish ME/CFS Association is that we can soon bring about change like that which has recently been seen in Norway - Rebecca Hansen Consultant Association /Danish ME/CFS Spain Dear friends and colleagues far and near, Yesterday, the Catalan Parliament accepted the Popular Legislative Initiative on Chronic Fatigue Popular Legislative Initiative on Chronic Fatigue Syndrome/ME and Fibromialgia (FM), presented by representatives from 80% of the people with CFS/ME or FM who are Catalonia. This acceptance is the first step towards a worldfirst: Invest in ME Charity Nr 1114035 in associations in a law that would ensure proper services for people with CFS/ME and FM and a fair treatment by medical inspectors. No one thought that a group of ill people like us, in a not so user-friendly country would be able to pull this off. So we are all very happy and it is a big boost for the CFS/ME and FM community here. Now that it has been accepted, the signature gathering can begin. We need 50,000 signatures and we have a team of 150 signature- collection coordinators ("fedetarios") ready to roll. Once the signatures are gathered, the law will be discussed in parliament and voted. This will probably take place in the fall. Up to now, it has been a lot of work for us sick folks: writing the law and the document to justify each article of the law (thank you to all of you who sent me the necessary bibliography!), working with all the associations to create unity and the much needed empowerment, meeting with all political groups and sub groups (we have the support of all the political parties, except, of course, the party that runs the Health Ministry), campaigning to recruit signature coordinators, meetings with unions, women's groups others. It has not been easy as we are presenting a proposed law that puts totally into question the government's plan to keep CFS/ME and FM solely in Primary Health Care (where most doctors do not believe these illnesses exist or do not want to work with them and are not allowed to do any relevant tests), while our law, amongst other things, demands CFS-FM units. So we have had (and continue) to deal with pressures, intimidations, etc, from government and government-related organizations. We are also having to deal with the two foundations (one run by the government party, the other run by businessmen) who, up to now, had managed to control and manipulate the CFS and FM associations in Catalonia and create division. Encouraging the associations to be independent and to create unity has been hard but the most rewarding work. The documents (the law, the justification document and other documents) are available in Catalan and some in Spanish. If anyone is receiving them, let us know. -Clara Valverde (Promoting Commission of the CFS/ME-FM Popular Legislative Initiative, Catalonia, Spain) www.investinme.org interested in 35
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