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  • European ME Alliance - European ME Alliance Expands to Eleven Countries
    Holland and Italy are the latest to join the Alliance From Holland Het Alternatief joins and includes Frank Twisk Frank has published several important papers in respected journals demonstrating the the lack of evidence supporting CBT and GET as treatments for ME From Italy Associazione Malati di CFS joins the Alliance AMCFS includes doctors and researchers as well as patients in its membership This now makes the European ME Alliance

    Original URL path: http://euro-me.org/news-Q22011-004.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance - Lectures by Dr David Bell in Sweden
    to 8th October 2011 Dr Bell has recently attended the 6th Invest in ME International ME CFS Conference in London and participated in the Invest in ME Corridor Conference meeting of researchers from seven different countries He also participated in the All Party Parliamentary Group on ME meeting arranged by Invest in ME at the Houses of Parliament to discuss biomedical research More details will follow later Dr David Bell MD has vast experience of ME CFS He graduated from Harvard College in 1967 with an AB degree in English literature followed by Boston University with an MD degree in 1971 Post doctoral training in paediatrics was completed in 1976 with subspecialty training in Paediatric Behaviour and Developmental Disorders In 1978 he began work at the University of Rochester but soon began a private practice in the town of Lyndonville New York In 1985 nearly 220 persons became ill with an illness subsequently called chronic fatigue syndrome in the communities surrounding Lyndonville New York This illness cluster began a study of the illness which continues today Dr Bell is the author or co author of numerous scientific papers on CFS and in 2003 was named Chairman of the Advisory Committee

    Original URL path: http://euro-me.org/news-Q22011-005.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance - Germany ME/CFS Conference 2011
    2011 June 2011 EMEA Germany member Fatigatio e V is holding its next ME CFS conference on 17th 18th September in Stuttgart Conference Flyer click here The agenda includes presentations from Professor Wolf gang Huber Heidelberg Dr Bodo Kuklinski Rostock Dr Bernd Michael Loffler Berlin Dr Wolfram Kersten Bamberg Professor Carmen Scheibenbogen Berlin Dr Richard Straube Furth i Wald Dr Joachim Strienz Stuttgart Dr John Ionescu Neukirchen Dr Wilfried Bieger

    Original URL path: http://euro-me.org/news-Q22011-006.htm (2016-04-27)
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  • European ME Alliance - EMEA Holland - Report on Vrije University Meeting in Brussels
    in Brussels June 2011 Frank Twisk has made an excellent summary of the recent meeting in Brussels about XMRV XMRV a recently discovered human retrovirus What do we know about it To view the report click here Return to 2011

    Original URL path: http://euro-me.org/news-Q22011-007.htm (2016-04-27)
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  • European ME Alliance - EMEA Norway - EMEA Norway - Health Directorate Press Release
    the Ministry The Directorate cannot on the basis of the current evidence based review of Professor Kenny De Meirlier s research studies recommend that public finances should cover expenses for this kind of treatment It is recommended to identify ongoing studies and summary findings from existing research studies on potential causes and diagnostics New research studies and recommendations of interventions have to be seen in relationship to the degree of severity of the disease mild moderate severe very severe and in relationship to the disease phase the patient is in unstable stabilisation phase improvement phase It is recommended to enhance funding research aimed at causal factors and treatment The facilitation for obtaining and spreading experience based knowledge through regional experience conferences will be done It is under consideration to establish a national treatment and competence service for CFS ME over a time limited period The Biobank at Oslo University Hospital Aker is closely associated with the national service It is recommended to establish ambulant teams for children young people and adults in all health regions It is recommended to start working to develop good models for how children as next of kin to people with CFS ME should be followed up It is recommended to establish an out patient clinic for CFS ME in all Health Regional Authorities It is recommended that rehabilitation services based on experiences and competence from Sølvskottberget a rehabilitation clinic where the health personnel over recent years had gained expertise in ME but which was suddenly was shut down by the South East Regional Health Authority It is recommended to establish regional Health Education and Coping Courses for patients and care givers It is recommended to continue the national wide telephone based information service Published June 23 2011 The SINTEF Report published February 28 2011 Services to patients with CFS ME in Norway SINTEF has been commissioned to work out a status report of the health and care services to patients with CFS ME in Norway The main objective of this assignment has been to provide the status for the health and care services in primary and specialist health services to children young people and those most severely affected with CFS ME The report provides an overview over diagnostic tools used in addition to which diagnoses in accordance with the ICD 10 Coding system that are used The data are based on a sample of 60 municipalities and three sub areas of Oslo City 330 general practitioners all the Regional Health Authorities and the two patient associations In summary our investigation allows us to draw the following conclusions There is a lack of knowledge on CFS ME in the social welfare and health services Few municipalities have established services specifically addressing the needs of patients with CFS ME Some of the Regional Health Authorities have not established any specific service to patients with CFS ME There is a lack of agreement on and about implementing diagnostic criteria or CFS ME There is a lack of curative

    Original URL path: http://euro-me.org/news-Q22011-009.htm (2016-04-27)
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  • European ME Alliance - RME Statement on UK PACE Trials
    of the reaction to the UK PACE Trials Sweden Statement from Sweden s RME Click here UK From UK Charity Invest in ME The PACE trials are bogus science and have no relevance in the treatment of people suffering from

    Original URL path: http://euro-me.org/news-Q12011-001.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance Press Release December 2010 - Call for Europe-Wide Ban on Blood Donation from People Diagnosed With ME/CFS
    including those who have recovered from giving blood The Alliance has also written directly to the European Health Commissioner urging him to enforce such a ban The UK ban follows similar action from Canada Australia and New Zealand while in USA American Association of Blood Banks has advised its membership to actively discourage potential donors who have been diagnosed with ME CFS from donating blood or blood components In Europe the National Blood Transfusion Services of Malta have been deferring donors permanently if they have a history of ME CFS and the Belgian Red Cross has for some time refused to accept ME CFS patients as blood donors EMEA believe such a prohibition is not only wise but is a necessary and urgent action that needs to be taken until more research can be performed Otherwise there is a great risk to the safety of blood supplies and to the health of citizens within Europe The reason for banning blood donations from patients diagnosed with ME CFS is in EMEA s view clearly a consequence of biomedical research which has shown that there is a possible infectious virus which may be transmissible via blood Since research published in Science magazine in October 2009 by the Whittemore Peterson Institute the National Cancer Institute and the Cleveland Clinic showed the possibility of a link between ME CFS and a gammaretrovirus xenotropic murine leukemia virus related virus XMRV further research groups are now actively engaged in replication and validation studies EMEA have also suggested that European health ministers convene in London in May 2011 at the time of the 6 th Invest in ME International ME CFS Biomedical Research Conference in order to meet with the leading experts and to hear of the latest biomedical research into ME CFS and experiences in diagnosing

    Original URL path: http://euro-me.org/EMEA%20Press%20Release%202010-002.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance Call for Europe-Wide Ban on Blood Donation from People Diagnosed With ME/CFS December 2010
    minister or Chief Medical Officers quoting this letter and ask them to support our request and attend the London meeting and the conference The EMEA letter to the European Commissioner for Health is as follows Dear Commissioner The European ME Alliance EMEA is a grouping of European organisations that are involved in supporting patients suffering from myalgic encephalomyelitis in some countries ME is embraced in the term ME CFS and campaigning for biomedical research to provide treatments and cures for ME The alliance consists of members from Belgium UK Germany Ireland Norway Spain Sweden Switzerland and Denmark As you will be aware research published in Science magazine in October 2009 by the Whittemore Peterson Institute the National Cancer Institute and the Cleveland Clinic has shown the possibility of a link between ME CFS and a gammaretrovirus xenotropic murine leukemia virus related virus XMRV Further research groups are now actively engaged in replication and validation studies In the meantime and d ue to the possible risk of contamination of blood supplies s several countries have revised guidelines for ME ME CFS patients On April 7 2010 Canada changed its policy for blood donors with a history or current diagnosis of ME CFS deferring them from donating for two years Australia s Red Cross announced on April 28 that it will indefinitely defer donors with a history or current diagnosis of ME CFS New Zealand has followed Canada s guidelines In the United States the American Association of Blood Banks AABB issued a June 18 2010 bulletin advising its membership to actively discourage potential donors who have been diagnosed by a physician with CFS In US also embracing patients with myalgic encephalomyelitis ME from donating blood or blood components On November 1 st 2010 the United Kingdom permanently deferred donors with a past or current history of ME CFS The U K National Health Service indicates that this change brings donor selection guidelines for ME CFS into line with other relapsing conditions or neurological conditions of unknown or uncertain origin such as MS and Parkinson s Disease In Belgium the Red Cross has for some time refused to accept ME CFS patients as blood donors They contend that ME CFS is a disease in full evolution with a suspicion of an auto immune component In Malta the National Blood Transfusion Services have been deferring donors permanently if they have a history of Myalgic Encephalomyelitis ME They state that the reason is not only due to the theoretical risk of viral transmission but also due to donor safety EMEA believe such a prohibition is not only wise but is a necessary and urgent action to take until more research can be performed Otherwise there is a great risk to the safety of blood supplies and to the health of citizens within Europe EMEA therefore request that you support our call to all European countries to initiate an immediate prohibition of blood donations from people who have been diagnosed with ME and ME CFS

    Original URL path: http://euro-me.org/news-Q42010-004.htm (2016-04-27)
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