Journal of IiME Volume 6 Issue 1 (June 2012) Current status of ME in Sweden The Swedish ME/CFS Association, RME, was founded in 1993 and restarted in 2002 in order to support and spread information and knowledge about ME/CFS to patients and their families, to doctors, researchers, the public and authorities. Today RME is a member of EMEA and has 944 members, 4 local associations and 12 supporting groups. The National Board of Health and Welfare in Sweden has registered ME/CFS as a neurological disease – following the WHO ICD Classification. Despite that, very few patients get the diagnosis ME/CFS in our country. In 2011, a book with the title “Fatigue is the wrong word” was written by 19 members, who all wrote their own medical history and described their present life. The book was completed with facts by doctors with ME/CFS experience. The book is today printed in 2100 copies. Of those we have sent more than 200 free copies to researchers, specialists, doctors, medical associations, medical advisers at The Swedish Social Insurance Agency and politicians all over the country. A translation from the book is found at the EMEA website. There have been initiatives taken for establishing biomedical treatment for ME/CFS in some county councils in Sweden. Last year a ME/CFS-clinic in the county council of Stockholm/Danderyd was founded by Dr Per Julin. Per and his colleague Indre Bileviciute Ljungar will present their experiences at a seminar at Region Skane in autumn. In Ostergotland a ME/CFS-clinic, Gotahalsan, has been established by the neurologist Anders Osterberg. In Molndal near Gothenburg, the Gottfries Clinic accepts patients suffering from ME/CFS or fibromyalgia. Several county councils are interested in starting care units. A Swedish network of researchers for biomedical ME/CFS research has been founded by among Invest in ME (Charity Nr. 1114035) others Professor Emeritus Jonas Blomberg, Clinical Virology, Uppsala University, Professor Jonas Bergquist, Analytical Chemistry, Uppsala University, Dr Per Julin, Danderyd Hospital and Post Doc Yenan Bryceson, Center for Infectious Medicine, Karolinska Institutet. Professor Jonas Bergquist published in 2011, with a group of researchers, a study about protein profiles in the cerebrospinal fluid in ME/CFS patients. This study received much attention. Riksföreningen för ME-patienter, Sweden http://www.rme.nu/ The European ME Alliance (EMEA www.eurome.org) is a collaboration of ME support charities and organisations in Europe who intend to provide a common view and the scientific facts regarding the neurological illness myalgic encephalomyelitis (ME/CFS). EMEA are campaigning for funding for biomedical research to provide treatments and cures for ME. The alliance was formed in 2008 by national charities and organisations in Europe. The Alliance now has representatives from Belgium, Denmark, Germany, Holland, Ireland, Italy, Norway, Spain, Sweden, Switzerland and the UK. The alliance has been created with a basic set of principles to provide a correct and consistent view of myalgic encephalomyelitis (ME/CFS) for healthcare organisations, healthcare professionals, government organisations, the media and patients and the public. Our objective is to establish a UK Centre of Excellence for Biomedical Research into ME. We welcome all support. Donations to the Invest in ME Biomedical Research Fund will be used to support the establishment of this facility. Help us by contributing to the Invest in ME Biomedical Research Fund for ME – http://tinyurl.com/ydh6whu www.investinme.org Page 19 of 108
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