MEpedia - User contributions [en]

Deutsche Gesellschaft für ME/CFS

2026-06-18T21:01:35Z

Bettina:/* Notable projects */ added clinical practice guideline

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS, abbreviated as DG.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]], [https://longcoviddeutschland.org/ Long COVID Deutschland,] the [https://mecfs.at/ Austrian Society for ME/CFS], and others.

== 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 hosted [[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, DG.ME/CFS organized the first online continuing education course on ME/CFS for GPs and specialists in 2021. An updated education course has been made available on the German Association's website in January 2025.<ref>{{Cite web | url = https://www.mecfs.de/informationen-fuer-aerztinnen-und-aerzte/on-demand-fortbildung/ | title = Online-Fortbildung zu ME/CFS für medizinisches Fachpersonal | date = 2025-01-10 | website = Deutsche Gesellschaft für ME/CFS|language=de-DE|access-date=2025-02-13}}</ref> Since 2022, around 3,200 doctors have been educated on ME/CFS through these courses (as of December 2024).

== 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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</ref>

Both organizations, together with Prof. Dr. Carmen Scheibenbogen and Prof. Dr. Uta Behrends, have lobbied for the release of funding in numerous discussions with members of the German Bundestag. DG.ME/CFS and Long COVID Germany have also teamed up to develop the [https://www.mecfs.de/aktionsplan/ National Action Plan for ME/CFS and post-COVID syndrome] in 2022. One of the demands is the promotion of targeted therapy studies for the diseases. These efforts led to the funding of the [https://cfc.charite.de/en/clinical_research/nksg/ Nationale Klinische Studiengruppe] (NKSG - National Clinical Studies Group) in the amount of 10 million euros.<ref>{{Cite web|url=https://www.mecfs.de/nksg_start/|title=Nationale Klinische Studiengruppe: Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom starten|date=2022-11-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2024-08-23}}</ref>

A medical advisory board was appointed in 2022, chaired by Prof. Dr. Carmen Scheibenbogen and vice-chaired by Prof. Dr. Uta Behrends.

In August 2025, the German Association, in cooperation with the Charité Fatigue Center (CFC) has published a [https://praxisleitfaden.mecfs.de/mecfs clinical practice guideline] on ME/CFS. It contains fundamental, therapeutically relevant information on the clinical picture, practical guidance on procedures and issues encountered in clinical practice, and evidence-based information on the symptomatic treatment of the condition according to the current state of scientific knowledge. This information is supplemented by the experience of specialists in the field. The guide is available online in German.<ref>{{Cite web|url=https://www.mecfs.de/praxisleitfaden-me-cfs/|title=Praxisleitfaden ME/CFS|date=2025-08-22|website=Deutsche Gesellschaft für ME/CFS|access-date=2026-06-18}}</ref>

==== Public awareness work ====
DG.ME/CFS had professional press photos taken in 2021 and 2022 for a more realistic presentation of ME/CFS in print and online media.<ref>{{Cite web|url=https://www.mecfs.de/presse/pressefotos/|title=Pressefotos - Deutsche Gesellschaft für ME/CFS|date=2025-02-13|website=Deutsche Gesellschaft für ME/CFS|access-date=2025-02-13}}</ref> These were supplemented by a new photo series in 2024, which may be used by other national and international organizations and initiatives for their campaigns and public relations work.<ref>{{Cite web|url=https://www.mecfs.de/mecfsfotos/|title=Neue Fotos für ME/CFS-Initiativen verfügbar / New Photos Available for ME/CFS Initiatives|date=2024-09-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2025-02-13}}</ref>

==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==
* December 2022, [https://www.mecfs.de/video-zu-post-exertioneller-malaise-pem/ Awareness Video explaining PEM, produced by DG.MECFS and Long COVID Deutschland]
* December 2022, [https://www.mecfs.de/neues-video-erklaert-pacing/ Awareness Video explaining Pacing, produced by DG.MECFS and Long COVID Deutschland]
* 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://bsky.app/profile/dgmecfs.bsky.social Bluesky]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.instagram.com/dg_mecfs/ Instagram]
*[https://www.mecfs.de/kontakt/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]

==References==
{{Reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2025-02-13T15:59:54Z

Bettina:/* Events */ added professional press photos and awareness photos

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS, abbreviated as DG.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]], [https://longcoviddeutschland.org/ Long COVID Deutschland,] the [https://mecfs.at/ Austrian Society for ME/CFS], and others.

== 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 hosted [[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, DG.ME/CFS organized the first online continuing education course on ME/CFS for GPs and specialists in 2021. An updated education course has been made available on the German Association's website in January 2025.<ref>{{Cite web | url = https://www.mecfs.de/informationen-fuer-aerztinnen-und-aerzte/on-demand-fortbildung/ | title = Online-Fortbildung zu ME/CFS für medizinisches Fachpersonal | date = 2025-01-10 | website = Deutsche Gesellschaft für ME/CFS|language=de-DE|access-date=2025-02-13}}</ref> Since 2022, around 3,200 doctors have been educated on ME/CFS through these courses (as of December 2024).

== 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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</ref>

Both organizations, together with Prof. Dr. Carmen Scheibenbogen and Prof. Dr. Uta Behrends, have lobbied for the release of funding in numerous discussions with members of the German Bundestag. DG.ME/CFS and Long COVID Germany have also teamed up to develop the [https://www.mecfs.de/aktionsplan/ National Action Plan for ME/CFS and post-COVID syndrome] in 2022. One of the demands is the promotion of targeted therapy studies for the diseases. These efforts led to the funding of the [https://cfc.charite.de/en/clinical_research/nksg/ Nationale Klinische Studiengruppe] (NKSG - National Clinical Studies Group) in the amount of 10 million euros.<ref>{{Cite web|url=https://www.mecfs.de/nksg_start/|title=Nationale Klinische Studiengruppe: Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom starten|date=2022-11-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2024-08-23}}</ref>

A medical advisory board was appointed in 2022, chaired by Prof. Dr. Carmen Scheibenbogen and vice-chaired by Prof. Dr. Uta Behrends.

==== Public awareness work ====
DG.ME/CFS had professional press photos taken in 2021 and 2022 for a more realistic presentation of ME/CFS in print and online media.<ref>{{Cite web|url=https://www.mecfs.de/presse/pressefotos/|title=Pressefotos - Deutsche Gesellschaft für ME/CFS|date=2025-02-13|website=Deutsche Gesellschaft für ME/CFS|access-date=2025-02-13}}</ref> These were supplemented by a new photo series in 2024, which may be used by other national and international organizations and initiatives for their campaigns and public relations work.<ref>{{Cite web|url=https://www.mecfs.de/mecfsfotos/|title=Neue Fotos für ME/CFS-Initiativen verfügbar / New Photos Available for ME/CFS Initiatives|date=2024-09-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2025-02-13}}</ref>

==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==
* December 2022, [https://www.mecfs.de/video-zu-post-exertioneller-malaise-pem/ Awareness Video explaining PEM, produced by DG.MECFS and Long COVID Deutschland]
* December 2022, [https://www.mecfs.de/neues-video-erklaert-pacing/ Awareness Video explaining Pacing, produced by DG.MECFS and Long COVID Deutschland]
* 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://bsky.app/profile/dgmecfs.bsky.social Bluesky]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.instagram.com/dg_mecfs/ Instagram]
*[https://www.mecfs.de/kontakt/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]

==References==
{{Reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2025-02-13T15:16:04Z

Bettina:/* Videos */ added 2 Videos

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS, abbreviated as DG.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]], [https://longcoviddeutschland.org/ Long COVID Deutschland,] the [https://mecfs.at/ Austrian Society for ME/CFS], and others.

== 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 hosted [[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, DG.ME/CFS organized the first online continuing education course on ME/CFS for GPs and specialists in 2021. An updated education course has been made available on the German Association's website in January 2025.<ref>{{Cite web | url = https://www.mecfs.de/informationen-fuer-aerztinnen-und-aerzte/on-demand-fortbildung/ | title = Online-Fortbildung zu ME/CFS für medizinisches Fachpersonal | date = 2025-01-10 | website = Deutsche Gesellschaft für ME/CFS|language=de-DE|access-date=2025-02-13}}</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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</ref>

Both organizations, together with Prof. Dr. Carmen Scheibenbogen and Prof. Dr. Uta Behrends, have lobbied for the release of funding in numerous discussions with members of the German Bundestag. DG.ME/CFS and Long COVID Germany have also teamed up to develop the [https://www.mecfs.de/aktionsplan/ National Action Plan for ME/CFS and post-COVID syndrome] in 2022. One of the demands is the promotion of targeted therapy studies for the diseases. These efforts led to the funding of the [https://cfc.charite.de/en/clinical_research/nksg/ Nationale Klinische Studiengruppe] (NKSG - National Clinical Studies Group) in the amount of 10 million euros.<ref>{{Cite web|url=https://www.mecfs.de/nksg_start/|title=Nationale Klinische Studiengruppe: Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom starten|date=2022-11-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2024-08-23}}</ref>

A medical advisory board was appointed in 2022, chaired by Prof. Dr. Carmen Scheibenbogen and vice-chaired by Prof. Dr. Uta Behrends.

==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==
* December 2022, [https://www.mecfs.de/video-zu-post-exertioneller-malaise-pem/ Awareness Video explaining PEM, produced by DG.MECFS and Long COVID Deutschland]
* December 2022, [https://www.mecfs.de/neues-video-erklaert-pacing/ Awareness Video explaining Pacing, produced by DG.MECFS and Long COVID Deutschland]
* 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://bsky.app/profile/dgmecfs.bsky.social Bluesky]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.instagram.com/dg_mecfs/ Instagram]
*[https://www.mecfs.de/kontakt/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]

==References==
{{Reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2025-02-13T15:03:39Z

Bettina:/* Events */ Updated educational course information and changed links. Added details to events.

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS, abbreviated as DG.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]], [https://longcoviddeutschland.org/ Long COVID Deutschland,] the [https://mecfs.at/ Austrian Society for ME/CFS], and others.

== 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 hosted [[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, DG.ME/CFS organized the first online continuing education course on ME/CFS for GPs and specialists in 2021. An updated education course has been made available on the German Association's website in January 2025.<ref>{{Cite web | url = https://www.mecfs.de/informationen-fuer-aerztinnen-und-aerzte/on-demand-fortbildung/ | title = Online-Fortbildung zu ME/CFS für medizinisches Fachpersonal | date = 2025-01-10 | website = Deutsche Gesellschaft für ME/CFS|language=de-DE|access-date=2025-02-13}}</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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</ref>

Both organizations, together with Prof. Dr. Carmen Scheibenbogen and Prof. Dr. Uta Behrends, have lobbied for the release of funding in numerous discussions with members of the German Bundestag. DG.ME/CFS and Long COVID Germany have also teamed up to develop the [https://www.mecfs.de/aktionsplan/ National Action Plan for ME/CFS and post-COVID syndrome] in 2022. One of the demands is the promotion of targeted therapy studies for the diseases. These efforts led to the funding of the [https://cfc.charite.de/en/clinical_research/nksg/ Nationale Klinische Studiengruppe] (NKSG - National Clinical Studies Group) in the amount of 10 million euros.<ref>{{Cite web|url=https://www.mecfs.de/nksg_start/|title=Nationale Klinische Studiengruppe: Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom starten|date=2022-11-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2024-08-23}}</ref>

A medical advisory board was appointed in 2022, chaired by Prof. Dr. Carmen Scheibenbogen and vice-chaired by Prof. Dr. Uta Behrends.

==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://bsky.app/profile/dgmecfs.bsky.social Bluesky]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.instagram.com/dg_mecfs/ Instagram]
*[https://www.mecfs.de/kontakt/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]

==References==
{{Reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2025-02-13T10:42:59Z

Bettina:/* Aims */ updated partners

[[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]], [https://longcoviddeutschland.org/ Long COVID Deutschland,] and others.

== 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 hosted [[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 GPs and specialists in 2021. An updated education course has been available on the German Association's website since December 2022.<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> Another new training course is planned as a live webinar in October 2024.<ref>{{Cite web|url=https://www.mecfs.de/onlinefortbildung/|title=Live-Webinar: ME/CFS, post-COVID – postinfektiöse Erkrankungen|language=de|access-date=2024-08-30}}</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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</ref>

Both organizations, together with Prof. Dr. Carmen Scheibenbogen and Prof. Dr. Uta Behrends, have lobbied for the release of funding in numerous discussions with members of the German Bundestag. These efforts led to the funding of the [https://cfc.charite.de/en/clinical_research/nksg/ Nationale Klinische Studiengruppe] (NKSG - National Clinical Studies Group) in the amount of 10 million euros.<ref>{{Cite web|url=https://www.mecfs.de/nksg_start/|title=Nationale Klinische Studiengruppe: Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom starten|date=2022-11-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2024-08-23}}</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://bsky.app/profile/dgmecfs.bsky.social Bluesky]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.instagram.com/dg_mecfs/ Instagram]
*[https://www.mecfs.de/kontakt/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]

==References==
{{Reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2025-02-12T17:47:42Z

Bettina:/* Online presence */ updated Links

[[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 hosted [[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 GPs and specialists in 2021. An updated education course has been available on the German Association's website since December 2022.<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> Another new training course is planned as a live webinar in October 2024.<ref>{{Cite web|url=https://www.mecfs.de/onlinefortbildung/|title=Live-Webinar: ME/CFS, post-COVID – postinfektiöse Erkrankungen|language=de|access-date=2024-08-30}}</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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</ref>

Both organizations, together with Prof. Dr. Carmen Scheibenbogen and Prof. Dr. Uta Behrends, have lobbied for the release of funding in numerous discussions with members of the German Bundestag. These efforts led to the funding of the [https://cfc.charite.de/en/clinical_research/nksg/ Nationale Klinische Studiengruppe] (NKSG - National Clinical Studies Group) in the amount of 10 million euros.<ref>{{Cite web|url=https://www.mecfs.de/nksg_start/|title=Nationale Klinische Studiengruppe: Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom starten|date=2022-11-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2024-08-23}}</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://bsky.app/profile/dgmecfs.bsky.social Bluesky]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.instagram.com/dg_mecfs/ Instagram]
*[https://www.mecfs.de/kontakt/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]

==References==
{{Reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2024-08-30T13:23:11Z

Bettina:/* Events */ updated online education course imformation

[[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 hosted [[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 GPs and specialists in 2021. An updated education course has been available on the German Association's website since December 2022.<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> Another new training course is planned as a live webinar in October 2024.<ref>{{Cite web|url=https://www.mecfs.de/onlinefortbildung/|title=Live-Webinar: ME/CFS, post-COVID – postinfektiöse Erkrankungen|language=de|access-date=2024-08-30}}</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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</ref>

Both organizations, together with Prof. Dr. Carmen Scheibenbogen and Prof. Dr. Uta Behrends, have lobbied for the release of funding in numerous discussions with members of the German Bundestag. These efforts led to the funding of the [https://cfc.charite.de/en/clinical_research/nksg/ Nationale Klinische Studiengruppe] (NKSG - National Clinical Studies Group) in the amount of 10 million euros.<ref>{{Cite web|url=https://www.mecfs.de/nksg_start/|title=Nationale Klinische Studiengruppe: Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom starten|date=2022-11-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2024-08-23}}</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]]

Deutsche Gesellschaft für ME/CFS

2024-08-23T14:12:24Z

Bettina:/* Notable projects */ added NKSG funding

[[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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</ref>

Both organizations, together with Prof. Dr. Carmen Scheibenbogen and Prof. Dr. Uta Behrends, have lobbied for the release of funding in numerous discussions with members of the German Bundestag. These efforts led to the funding of the [https://cfc.charite.de/en/clinical_research/nksg/ Nationale Klinische Studiengruppe] (NKSG - National Clinical Studies Group) in the amount of 10 million euros.<ref>{{Cite web|url=https://www.mecfs.de/nksg_start/|title=Nationale Klinische Studiengruppe: Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom starten|date=2022-11-10|website=Deutsche Gesellschaft für ME/CFS|access-date=2024-08-23}}</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]]

Deutsche Gesellschaft für ME/CFS

2024-08-23T13:32:26Z

Bettina:/* Aims */

[[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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</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]]

Deutsche Gesellschaft für ME/CFS

2024-08-23T13:11:07Z

Bettina:added coalition agreement 2021 /* Aims */

[[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>

Together with the [https://longcoviddeutschland.org/ Long COVID Deutschland] initiative, the German Association successfully campaigned for ME/CFS and Long COVID to be mentioned in a federal government coalition agreement for the first time following the 2021 federal elections. The agreement states: “To further research and ensure needs-based care for the long-term consequences of Covid-19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics.”<ref>{{Cite web|url=https://fragdenstaat.de/dokumente/142083-koalitionsvertrag-2021-2025/|title=Koalitionsvertrag 2021-2025|date=|year=2021|page=83|language=de|access-date=2024-08-23}}</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]]