News from N rway The Norwegian ME Association works to improve the condition for MEpatients through informing both patients and health care workers, health authorities and politicians about ME and about new research on ME. The association also arranges talks and conferences as well as informal meetings where patients can meet other in the same situation. The association has local chapters in almost all counties. During 2016 the Norwegian ME Association has responded to calls for input regarding new laws concerning child protection services, services for disabled persons and education for disabled children. In January the association published the report from a large survey of ME patients experience with Nav. NAV administers a third of the national budget through schemes such as unemployment benefit, work assessment allowance, sickness benefit, pensions, child benefit and cash-for-care benefit. Many ME patients report that they find it difficult to get the benefits to which they are entitled. The report showed that the treatment of patients varies wildly between offices, and that there is little knowledge of ME within Nav. Since the report was published, the association has been invited to present it at several Nav offices, and we hope to go to many others. We are very pleased to see a growing interest in ME as experienced by the patients. Representatives for the association has also talked at ME conferences, both arranged by patients and by the health authorities The Norwegian ME Association is often asked to provide background information for articles in magazines and newspapers. Representatives for the association has also been on the news on national radio several times. The association has a large website filled with information on ME. The website is updated regularly, both with research news, and “human interest” stories. A guest blog has become very popular. Recently, the Research Council of Norway invites patients to tell them what research into ME was needed. They received more than 700 replies. A board of researchers and patient representatives, two from the ME Association, will soon start to look through the ideas and identify projects.
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