Journal of IiME Volume 1 Issue 1 ME News from Around Europe Invest in ME believe that the seriousness and the scale of myalgic encephalomyelitis requires an international focus and this requires scientists, researchers, healthcare professionals and ME Support groups in all countries to work together. Collaboration may be the key to success and this means taking a consistent approach to research, diagnosis and treatment. The following updates from around Europe and USA were some of those Invest in ME received for the conference from people working in the ME community in other countries and illustrate the current status and problems in these countries. Norway – A Breakthrough? Recent news from Norway gives hope that changes are afoot in the way myalgic encephalomyelitis is being perceived and treated. After much campaigning the results of the Norwegian ME-forening (the Norwegian ME Association - the main support group for people with ME in Norway) is bearing rewards. On Thursday 29th March Stortinget (Norwegian Parliament) completed a 1 hour and 10 min debate about ME and what should be done about the situation. This has led to the Norwegian Minister for Health and Care Services announcing publicly a long list of proposals which she stated will be put into action to ensure that ME-patients get proper care. The minister, Sylvia Brustad, has now engaged herself personally in the case of ME. The health minister is on record as stating that more knowledge, support, research and funding is required to provide an adequate approach to this illness which is estimated to affect 10,000 Norwegians. "This is an illness which is difficult to diagnose and treat, and it is an illness to which health services have, up till now, given too little attention. This the government will change, and we will follow this up in the budget process" said minister Brustad. Severe ME - A story from Norway The story of the Krisner family from Norway was shown on the Invest in ME Conference DVD from 2006 – a story of one family where three siblings severely affected by ME. The mother, Kjersti, is a brave, resourceful and inspirational woman who manages still to see positives from the terrible situation. For those who have not seen the Norwegian TV channel Puls’ film please go to – http://www.investinme.org/Mediatelevision3.htm We called Kjersti to ask her how things were a year on. Her children are still very ill. Katrine, 28 years old in May, has been ill since the age of 20. She is the worst affected. She cannot communicate at all and touching her even gently hurts. She is being tube fed and in nappies. There are moments of hope but they are very tiny and don’t last long – sometimes a smile or being able to hold her mother’s hand. Once her mother was able to give her a hug. Bjornar, 30, is still lying in total darkness but can talk a little bit in the afternoon. He is getting mentally stronger and wants so much to get out of his situation but the body is too weak. The family can’t see him because he cannot tolerate any light and his room has to be kept in total darkness. Frode, 20, can get out in an electric wheelchair and work on a computer a couple of hours a day. He has started an internet company and is stable as he knows his limits. The Krisner family now have help in the form of a community nurse who comes and helps in the daytime. Before, the family had to manage all the care themselves and that has meant that Kjersti hasn’t been able to sleep much for many years as the children are so severely affected and have all different sleep patterns. Kjersti is optimistic and despite everything they laugh a lot in the family and she is constantly helping others in a similar situation. She is collating information on people with M.E. in Norway who are bedbound and who are tube fed. She says it is easier to do that in a small country and it gives vital information for the politicians. Kjersti feels patients themselves, and carers, are the experts in this illness and should be listened to. She wished us well with the conference and would have liked to attend but obviously she can't - but said she believes one day her turn will come. Such a strong and inspiring family despite everything. Invest in ME Charity Nr 1114035 www.investinme.org 34
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