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  • European ME Alliance - Norway's Directorate of Health Apologises to ME Patients for Poor Treatment
    the necessary and proper health services to persons with ME Such a public apology from a governmental health agency has never occurred before Bjørn Guldvog Deputy Director General of the Norwegian Directorate of Health made the following statement Jeg tror at vi i for liten grad har klart å møte menneskene som har kronisk utmattelsessyndrom på en god nok måte Jeg tror at det er riktig å si at vi

    Original URL path: http://euro-me.org/news-Q42011-003.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance - Sweden ME/CFS Seminar August 2011
    The seminar organisers are Stockholms County Council Karolinska Institute Danderyds Hospital Time and Place Date Wednesday 24th August 2011 Time 12 30 16 30 Location Landstingshuset in Stockholm Hantverkargatan 45 Speakers will include Professor Anthony Komaroff Harvard University Boston USA Professor Yasuyoshi Watanabe Osaka City Medical School Osaka Japan Dr Suzanne Vernon Programme Director CFIDS USA Dr Per Julin Research leader for ME CFS project at Danderyds hospital Professor Karin Schenck Gustafsson KI och Centrum för genusmedicin Professor Birgitta Evengård conference moderator Umeå University Centre for Global Health Research PRELIMINARY AGENDA 12 30 13 00 Refreshments 13 00 13 05 Welcome by Commissioner of Health Care Stockholm County Council 13 05 13 15 The gender perspective in health care and research Prof Karin Schenck Gustafsson 13 15 13 30 The new ME CFS project in Stockholm a brief overwiev Dr Per Julin 13 30 13 35 Presentation of invited speaker Prof Komaroff by Prof Birgitta Evengård 13 35 14 15 Chronic Fatigue Syndrome CFS Prof Komaroff Short break with snacks 14 30 14 35 Presentation of invited speaker Prof Watanabe by Prof Birgitta Evengård 14 35 15 15 CFS in Japan Prof Watanabe 15 15 15 20 Presentation of invited

    Original URL path: http://euro-me.org/news-Q32011-001.htm (2016-04-27)
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  • European ME Alliance - EMEA Response to The Times ME Articles
    one comment made by Wessely where he claims that ME does not exist in Spain or Italy EMEA is a grouping of national ME patient groups and charities from eleven European countries including Spain and Italy EMEA have performed some quick research on this and it is quite easy to lay bare Wessely s comments In the link below from our web site there are details of research which disprove Wessely s comment and surely bury Marsh s risible statement that Wessely is Britain s foremost authority on ME a statement which surely patients and patient groups in the UK and Europe would disagree with The reality is actually more disturbing In order to expand both Marsh s and Wessely s knowledge about ME we have also added some research references from Switzerland France and Greece This is all on top of the existing biomedical research base in UK Norway Sweden Germany Holland Belgium Ireland USA Canada Australia New Zealand etc The research references can be found at European ME Alliance EMEA Response to The Times ME Articles The appallingly superficial article by Marsh is something that we believe this reporter will eventually be ashamed of Surely a more worthy

    Original URL path: http://euro-me.org/news-Q32011-002.htm (2016-04-27)
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  • European ME Alliance - International Consensus Criteria
    of the new International Consensus Criteria which were published on 22 August 2011 in the Journal of Internal Medicine The link to the original publication in English is here Here is the Norwegian Translation click on the image below Return

    Original URL path: http://euro-me.org/news-Q32011-003.htm (2016-04-27)
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  • European ME Alliance - Hooper Letter to Observer
    August a series of coordinated articles have appeared in the UK media publicising the views of Professor Simon Wessely regarding ME Professor Malcolm Hooper has responded to one of these articles in the Observer newspaper Below are links to his

    Original URL path: http://euro-me.org/news-Q32011-004.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance - Norway ME/CFS Conference October 2011
    Norway Norwegian ME Association ME CFS Conferences Oslo and Bergen October 2011 September 2011 EMEA Norway member Norwegian ME Association is holding its next ME CFS conferences on 18th and 19th October in Oslo and Bergen respectively More detail available

    Original URL path: http://euro-me.org/news-Q32011-005.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance - Ellen Piro IACFS Award
    being the leader secretary ombudsman for patients mentor adviser coordinator press contact having telephone call duty etc It was never a nine to five job but rather around the clock commitment during all these years This has to be seen in the light of her severe illness which makes the contribution even more admirable and deserving of the prestige of the award The first office was in bed but now the main office is located in the centre of Oslo Ellen Piro has been the editor and lead author of the organizations newsletter in all these years translated and helped translating medical information to the benefit of non English speaking Norwegian citizens to educate anyone who is affected in one way or another During the growth of the association both number of members and subdivisions have steadily increased In nearly every county there is now a subdivision and one or more local support groups In order to educate health professionals and patients she has been in charge of member teams in organizing medical conferences in different parts of Norway Only one conference will be mentioned here namely the International Biomedical Conference in Oslo October 2007 when the board members of IACFS ME decided to have their board meeting in Norway and also kindly offered to speak at the Norwegian ME Association s conference This two day conference turned out to be a great success full house both days and the presence of a Member of Parliament In addition to her leadership organizational work and fulfilling the mandate of being a patient representative in the public domain she supported and helped severely sick ME patients dismissed by the health care system Literally speaking she has kept many sufferers alive with her round the clock service moral support to keep up hope

    Original URL path: http://euro-me.org/news-Q32011-006.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance DSM-6 June 2011 - Submission to DSM-5
    concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to imply that anyone who has a chronic or incurable illness with somatic symptoms and misattributes their symptoms could be given this label Who decides when someone misattributes their pain or fatigue How are these symptoms measured How long and vigorously is a patient allowed to complain about their symptoms before a doctor can decide to investigate further and determine if a headache is a brain tumour or irritable bowel syndrome colon cancer In the CSSD Criteria B there are terms used which are subjective and not measurable such as health concerns and catastrophising Based on our collective experiences with the treatment of an organic illness such as ME CFS experiences across Europe our concern is that there is a great danger of mis or missed diagnoses when looking at this category and its proposed diagnostic criteria The criteria are very vague and allow too much subjectivity In fact ME CFS could mistakenly be placed in this category if one were to ignore or be unaware of the huge volume of biomedical research and evidence which shows it to be an organic illness and if one were to use only the broad CSSD criteria to diagnose Such an action would be a major and costly mistake and would not serve the patients or the healthcare communities In our experience specialist ME CFS clinics get as many as 40 of patients referred with a ME CFS diagnosis who turn out to have other very serious and sometimes fatal illnesses The patients we are concerned with suffer from myalgic encephalomyelitis which is a neurological disease Yet all too often these patients are being treated as if they had a somatoform illness Parents of children with ME

    Original URL path: http://euro-me.org/news-Q22011-003.htm (2016-04-27)
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