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Deutsche Gesellschaft für ME/CFS
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[[File:DG MECFS Logo.png|thumb|right]] The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web | url = https://www.mecfs.de/kontakt/ | title = Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers. ==Aims== Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web | url = https://www.mecfs.de/wir-ueber-uns/ | title = Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the team of Prof. [[Carmen Scheibenbogen]] at the university hospital [[Charité Berlin|Charité]] in Berlin, the team of Prof. [[Uta Behrends]] at the [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München] in Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]], [[Fatigatio e.V.|Fatigatio]] and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]]. == Events == The German Association organized the first German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web | url = https://www.mecfs.de/millionsmissing/ | title = #MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2017<ref>{{Cite web | url = https://www.mecfs.de/internationaler-mecfs-tag-2017/ | title = Internationaler ME/CFS-Tag 2017 | date = 2017-05-12 | website = Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partners with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests since 2018.<ref>{{Cite web | url = https://www.mecfs.de/me-cfs-news-update-04-18/ | title = ME/CFS – News Update 04/18 | date = 2018-05-20 | website = Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref><ref>{{Cite web | url = https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/ | title = Int. ME/CFS-Tag {{!}} #MillionsMissing 2019 | date = 2019-05-12 | website = Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> It also hosts [[Unrest]] screenings in Germany and organized the German premiere.<ref>{{Cite web | url = https://www.mecfs.de/unrest/ | title = UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association organized its first ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web | url = https://www.mecfs.de/me-cfs-forum-2019-hamburg/ | title = ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> Together with Charité Berlin and TU Munich, the German Association organized the first online continuing education course on ME/CFS for physicians in 2021.<ref>{{Cite web | url = https://www.mecfs.de/online-fortbildung-zu-me-cfs-fuer-medizinisches-fachpersonal/ | title = Online-Fortbildung zu ME/CFS für medizinisches Fachpersonal | date = 2021-02-20 | website = Deutsche Gesellschaft für ME/CFS|language=de-DE|access-date=2021-03-07}}</ref> == Notable projects == The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web | url = https://startsocial.de/projekte/wettbewerb/2016 | title = Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web | url = https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/ | title = Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet | date = 2017-06-07 | website = Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref> The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web | url = https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/ | title = Stellungnahme zur »Leitlinie Müdigkeit« | date = 2018-02-01 | website = Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent the guideline from issuing binding treatment recommendations with no scientific evidence ([[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) for ME/CFS.<ref>{{Cite web | url = https://www.mecfs.de/degam-veroeffentlicht-revidierte-fassung-der-leitlinie-muedigkeit/ | title = DEGAM veröffentlicht revidierte Fassung der Leitlinie »Müdigkeit« | date = 2018-05-22 | website = Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> Together with [[MillionsMissing Deutschland|MillionsMissing Germany]] and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web | url = https://www.mecfs.de/parlament-fachgespraech/ | title = Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag | date = 2020-03-07 | website = Deutsche Gesellschaft für ME/CFS|access-date=2020-07-07}}</ref> A first roundtable with patient organizations and the Ministry of Health and Research was held in December 2020.<ref>{{Cite web | url = https://www.facebook.com/login/?next=https%3A%2F%2Fwww.facebook.com%2Fdg.mecfs%2Fposts%2F947726572302075 | title = Log into Facebook|website=Facebook|language=en|access-date=2021-03-07}}</ref> A medical advisory board was appointed in 2022. ==Interviews and media reports== * May 2019, ARD: [https://www.youtube.com/watch?v=6Jm9UF5sU9Q "Mit 19 Jahren Pflegefall"] * May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"] * September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"] * June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"] ==Videos== * June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg] * May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin] * May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin] * May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich] * May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin] * May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin] * September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg] == Photos == * June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg] * September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg] ==Online presence== *[http://www.mecfs.de/ Website] *[https://www.facebook.com/dg.mecfs/ Facebook] *[https://twitter.com/dg_mecfs Twitter] *[https://vimeo.com/user57689412 Vimeo] *[https://www.instagram.com/dg_mecfs/ Instagram] *[https://www.mecfs.de/newsletter/ Newsletter] ==See also== * [[Charité Berlin]] * [[MillionsMissing Deutschland|MillionsMissing Germany]] ==References== {{Reflist}} [[Category:Patient groups]] [[Category:German patient groups]]
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