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  • European ME Alliance - News Items Q4 2008 European ME Alliance Press Release
    AIDS and late stage cancer ME has a prevalence of 0 4 of the population with many of the sufferers being children It is the major cause for long term absence from school for children In the UK ME is five times more prevalent than HIV AIDS 25 of people diagnosed with ME may be severely affected house bound often bed bound left with little help from the medical community often made to struggle to obtain benefits and left to an uncertain and debilitating future ME is estimated to cost European economies billions of Euros every year ME is a multi system illness and distinct sub groups have been identified and some treatments have been shown to be effective To establish more comprehensive treatments and cures for these and other sub groups requires investment in biomedical research Yet no public funding of biomedical research is currently taking place in Europe so biomedical research projects are funded solely by the private grants to individual researchers and from ME support groups and individuals With little funding of biomedical research into ME within Europe the EMEA are hoping to attract more support for research activities and hope to convince governments to recognize the necessity for a European biomedical research strategy to cure this illness ME needs more awareness from the public politicians and healthcare staff We invite other organisations across Europe to support our objectives to change the perception of this illness and force change in government policies and accept the urgent need for biomedical research into the illness in order to establish treatments and cures for this devastating illness Member organisations of EMEA have agreed the following principles Members of the European ME Alliance endorse the principles of the 2003 Canadian Consensus Document for Diagnosis and Treatment for ME CFS Members of

    Original URL path: http://euro-me.org/news-Q42008-001.htm (2016-04-27)
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  • European ME Alliance - Finland - Suomen CFS-Yhdistys - Finlands CFS-förbund
    CFS is based in Tampere and covers all of Finland The Association s purpose is to support ME CFS patients and their families and to protect their interests and to increase awareness of the disease and improve services The Association s aims to facilitate proper diagnosis treatment and rehabilitation services at the right time for patients and to promote and develop social security other services and living conditions and to

    Original URL path: http://euro-me.org/Finland%20CFS-Yhdistys.htm (2016-04-27)
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  • European ME Alliance - Iceland - Icelandic ME association
    Web Address http www mefelag is Contact mefelag gmail com The Icelandic ME Association was founded on March 12 2011 The Association consists of ME patients The window below is the actual web site of Icelandic ME Association Your browser

    Original URL path: http://euro-me.org/Icelandic%20ME%20association.htm (2016-04-27)
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  • European ME Alliance - Swedish TV Programme on ME Services
    to be pretty strong to cope with a life such as this To live in such isolation with so little stimulation having so little external contacts Pernilla Zethraeus Affects mostly women ME is classified as a neuro immunological disease by WHO It affects mostly women but also children and men fall ill ME exists all over the world In Sweden there is estimated around 40 000 affected but only a few get the diagnosis let alone the right treatment The reason is that there are only two small clinics that specialise in ME one in Halland and one in western Götaland and also a temporary project clinic in Stockholm County Only those who are fortunate enough to live in the right county and get a referral will get specialist help It s really bad Only in Stockholm we have a huge influx of referrals and we can maybe take care of a quarter of the referrals we receive whcih is very unsatisfactory And then it s just the assessment says Ewa Milerad Chief of the ME clinic at Danderyd Hospital Impossible to get inquiry Pernilla Zethraeus tried to ward off the disease for several years but in the end was not able to any longer She understood that it was something other than just recurrent infections I tried to be examined before and after obtaining a sickness absence from the national health system It was nearly impossible Family doctors passed in revue and there was no specialist to be referred to so in the end in 2006 I gathered my own money went to a private clinic and bought myself an examination says Pernilla Zethraeus Lower quality of life than for heart disease Doctor Olof Zachrisson has a PhD in ME and is working in the Gottfries Clinic in Mölndal

    Original URL path: http://euro-me.org/news-Q42013-002.htm (2016-04-27)
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  • European ME Alliance - EMEA Response to The Times ME Articles
    Arpino C Carrieri MP Valesini G Pizzigallo E Rovere P Tirelli U Conti F Dialmi P Barberio A Rusconi N Bosco O Lazzarin A Saracco A Moro ML Vlahov D Ann Ist Super Sanita 1999 35 3 435 41 PMID 10721210 PubMed indexed for MEDLINE 6 Brain positron emission tomography PET in chronic fatigue syndrome preliminary data Tirelli U Chierichetti F Tavio M Simonelli C Bianchin G Zanco P Ferlin G Am J Med 1998 Sep 28 105 3A 54S 58S P MID 9790483 PubMed indexed for MEDLINE 7 Immunological abnormalities in patients with chronic fatigue syndrome Tirelli U Marotta G Improta S Pinto A Scand J Immunol 1994 Dec 40 6 601 8 PMID 7997849 PubMed indexed for MEDLINE 8 Clinical and immunologic study of 205 patients with chronic fatigue syndrome a case series from Italy Tirelli V Pinto A Marotta G Crovato M Quaia M De Paoli P Galligioni E Santini G Arch Intern Med 1993 Jan 11 153 1 116 7 120 No abstract available PMID 8422193 PubMed indexed for MEDLINE Switzerland 1937 EPIDEMIC 3 Erstfield Switzerland Stahel H Die Poliomyelitis Epidemic bei Stab Geb IR 37 and Geb Sch Bat II Erstfeld 18 30 July 1937 Die Abortiv Poliomyelitis Schweiz Med Wochenschr 1938 68 86 91 1937 EPIDEMIC 4 Frohburg Hospital St Gallen Switzerland Gsell O Abortive Poliomyelitis Verlag Thieme Leipzig 1938 13 18 The three Swiss epidemics 3 4 and 6 are summarised in review articles by Gsell O 1958 and Parish JG 1978 Switzerland Gsell O Encephalomyelitis myalgia epidemica eine poliomyelitisahnliche Krankheit Schweiz Med Wochenschr 1958 88 488 91 1961 Sporadic Case Basel Switzerland Gsell O Encephalomyelitis myalgia benigna epidemische Pseudoneurasthenie Schweiz Med Wochenschr 1963 93 197 200 and 196 1 2 France 1 http www ncbi nlm nih gov pubmed 20798036 2 http

    Original URL path: http://euro-me.org/news-Q32011-0021.htm (2016-04-27)
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  • European ME Alliance - RME Response to UK PACE Trials February 2011
    60 of patients In addition to a 6 minute walking test measure with very modest improvements lacked any objective performance parameters The study is based on the so called Oxford criteria but has also been analyzed in two other criteria categories The use criteria categories used cover a much more heterogeneous population than the so called Fukuda criteria and the Canadian consensus criteria normally used by international researchers No severely ill ME CFS patients were included in the study and 47 of participants had a psychiatric diagnosis Table 2 The small and subjective improvement reported for a heterogeneous group of patients in the PACE study must be weighed against other more negative results in similar studies In a Spanish study of patients who met the more stringent Fukuda criteria the authors Núñez et al concluded that CBT and GET used over 12 months did not lead to any improvement but rather deteriorating physical function and pain 2 Even the sister study to the PACE called FINE both funded by the British authorities gave essentially negative results 3 There are also several surveys made by patient associations in Britain and Norway which together represent a base of several thousand patients with much more varied severity of the disease than in the PACE study All these surveys show that the negative effects of CBT and GET are considerable Therefore there is currently no reason for RME to reconsider our sceptical attitude to CBT and GET Recent studies and surveys presented in the following summary click here In summary CBT and GET are not curative treatments for ME CFS and that everyone agrees on the need for more research that could lead to effective treatments Biomedical research that clarifies the disease identifies subgroups and finds effective remedies must henceforth be given the highest

    Original URL path: http://euro-me.org/news-Q12011-00101.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance European ME Alliance Pressemeddelelse December 2010 - Call for Europe-Wide Ban on Blood Donation from People Diagnosed With ME/CFS
    New Zealand mens American Association of Blood Banks har rådgivet sine medlemmer om aktivt at fraråde potentielle donorer der er diagnosticeret med ME CFS fra at donere blod eller blodkomponenter I Europa har Maltas National blodtransfusion udstedt et permanent donationsforbud for dem der har en ME CFS sygehistorie og Belgisk Røde Kors har i et stykke tid nægtet at acceptere ME CFS patienter som bloddonorer EMEA mener at et sådant forbud ikke kun er klogt men en nødvendig og presserende foranstaltning at tage indtil mere forskning kan udføres Ellers er der en stor risiko forbundet med sikkerheden ved blodforsyninger og for europæiske borgeres sundhed Grunden til at forbyde patienter diagnosticeret med ME CFS at donere blod er ifølge EMEA s opfattelse en klar konsekvens af biomedicinsk forskning der har påvist at der findes en mulig smitsom virus som kan overføres via blod Siden forskning som blev offentliggjort i tidsskriftet Science i oktober 2009 af Whittemore Peterson Institute National Cancer Institute og Cleveland Clinic påviste muligheden for en sammenhæng mellem ME CFS og en gammaretrovirus xenotropic murine leukæmi virus relateret virus XMRV er adskillige forskningsgrupper er nu aktivt engageret i replikations og valideringsundersøgelser EMEA har også foreslået at europæiske sundhedsministre mødes i London i maj 2011 efter den 6 Invest in ME Internationale ME CFS biomedicinske forskning konference for at mødes med førende eksperter på ME CFS området og høre om den nyeste biomedicinske forskning i ME CFS og om erfaringer med diagnosticering og behandling af ME CFS ME CFS er kategoriseret af World Health Organisation som en neurologisk sygdom og den påvirker millioner af europæere European ME Alliance EMEA er en sammenslutning af europæiske organsiationer der er involveret i at støtte patienter der lider af ME CFS og som kæmper for biomedicinsk forskning med henblik på at finde frem til

    Original URL path: http://euro-me.org/DK/EMEA%20Press%20Release%202010-002.htm (2016-04-27)
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  • European ME Alliance - European ME Alliance Pressemitteilung - Die European ME Alliance fordert ein europaweites Blutspendeverbot für ME/CFS-Patienten
    und Verbraucherschutz direkt angeschrieben und ihn dringend gebeten ein solches Verbot in Kraft zu setzen Das britische Blutspendeverbot folgte auf entsprechende Maßnahmen Kanadas Australiens und Neuseelands In den USA hat die American Association of Blood Banks AABB seinen Mitgliedsorganisationen angeraten mögliche Spender mit der Diagnose ME CFS aktiv davon abzuhalten Blut oder Blutbestandteile zu spenden und das US amerikanische Rote Kreuz hat diese Empfehlungen der AABB nicht nur in die Tat umgesetzt sondern ist noch weiter gegangen und hat für Menschen mit der Diagnose ME CFS in der Krankengeschichte ein Blutspendeverbot auf unbestimmte Zeit angeordnet In Europa haben Maltas nationale Bluttransfusionsdienste Menschen mit ME CFS auf Dauer von Blutspenden ausgeschlossen und das belgische Rote Kreuz lehnt schon eine Weile ME CFS Patienten als Blutspender ab Die EMEA ist der Überzeugung dass ein solches Verbot nicht nur sinnvoll sondern notwendig ist und dass dringend Maßnahmen ergriffen werden müssen bis weitere Forschungsarbeiten durchgeführt worden sind Geschieht dies nicht besteht ein großes Risiko für die Sicherheit der Blutvorräte und damit für die Gesundheit der Bürger Europas Der Grund für ein Blutspendeverbot durch Patienten mit der Diagnose ME CFS ist aus Sicht der EMEA die klare Konsequenz aus der biomedizinischen Forschung nach der es ein möglicherweise infektiöses Virus bei diesen Patienten gibt das durch Blut übertragen werden kann Seit der Veröffentlichung der Forschungsergebnisse des Whittemore Peterson Institutes des National Cancer Institutes und der Cleveland Clinic im Wissenschaftsmagazin Science im Oktober 2009 über den möglichen Zusammenhang zwischen ME CFS und einem Gamma Retrovirus dem sogenannten xenotropic murine leukemia virus related virus XMRV arbeiten andere Forschergruppen mit Nachdruck an einer Replikation und Bestätigung dieser Studien Die EMEA hat zudem vorgeschlagen dass die Gesundheitsminister der europäischen Länder im Mai 2011 anlässlich der 6 International Invest in ME International ME CFS Biomedical Research Conference zusammenkommen um die führenden

    Original URL path: http://euro-me.org/DE/EMEA%20Press%20Release%202010-002.htm (2016-04-27)
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