Deutsche Gesellschaft für ME/CFS

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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.[1] The German Association is run by dedicated volunteers.

Aims[edit | edit source]

Its goals are rising awareness, educating and to gain medical and social recognition of ME/CFS in Germany.[2] The organization works closely together with the team of Prof. Carmen Scheibenbogen at the university hospital Charité in Berlin, the team of Prof. Uta Behrends at the Kinderklinik Schwabing der Technischen Universität München in Munich, the Lost Voices Foundation, Fatigatio and is official partner and supporter of MillionsMissing Germany.

Events[edit | edit source]

The German Association organized the first German #MillionsMissing events in 2016[3] and 2017[4] and partners with MillionsMissing Germany for the protests since 2018.[5][6] It also hosted Unrest screenings in Germany and organized the German premiere.[7]

The German Association organized its first ME/CFS conference (accredited for CME) 2019 in Hamburg.[8] 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.[9] Another new training course is planned as a live webinar in October 2024.[10]

Notable projects[edit | edit source]

The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.[11] It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.[12]

The organization successfully lodged a complaint against the methodological shortcomings[13] 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 (GET and CBT) for ME/CFS.[14]

Together with 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.[15] A first roundtable with patient organizations and the Ministry of Health and Research was held in December 2020.[16]

Together with the 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.”[17]

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 Nationale Klinische Studiengruppe (NKSG - National Clinical Studies Group) in the amount of 10 million euros.[18]

A medical advisory board was appointed in 2022.

Interviews and media reports[edit | edit source]

Videos[edit | edit source]

Photos[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ↑ "Kontakt". Deutsche Gesellschaft für ME/CFS. Retrieved July 21, 2019.
  2. ↑ "Wir über uns". Deutsche Gesellschaft für ME/CFS. Retrieved July 21, 2019.
  3. ↑ "#MillionsMissing". Deutsche Gesellschaft für ME/CFS. Retrieved July 21, 2019.
  4. ↑ "Internationaler ME/CFS-Tag 2017". Deutsche Gesellschaft für ME/CFS. May 12, 2017. Retrieved July 22, 2019.
  5. ↑ "ME/CFS – News Update 04/18". Deutsche Gesellschaft für ME/CFS. May 20, 2018. Retrieved July 21, 2019.
  6. ↑ "Int. ME/CFS-Tag | #MillionsMissing 2019". Deutsche Gesellschaft für ME/CFS. May 12, 2019. Retrieved July 21, 2019.
  7. ↑ "UNREST". Deutsche Gesellschaft für ME/CFS. Retrieved July 21, 2019.
  8. ↑ "ME/CFS-Forum 2019 in Hamburg". Deutsche Gesellschaft für ME/CFS. Retrieved July 21, 2019.
  9. ↑ "Online-Fortbildung zu ME/CFS für medizinisches Fachpersonal". Deutsche Gesellschaft für ME/CFS (in Deutsch). February 20, 2021. Retrieved March 7, 2021.
  10. ↑ "Live-Webinar: ME/CFS, post-COVID – postinfektiöse Erkrankungen" (in Deutsch). Retrieved August 30, 2024.
  11. ↑ "Projekte 2016 | startsocial". startsocial.de. Retrieved August 13, 2019.
  12. ↑ "Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet". Deutsche Gesellschaft für ME/CFS. June 7, 2017. Retrieved August 13, 2019.
  13. ↑ "Stellungnahme zur »Leitlinie Müdigkeit«". Deutsche Gesellschaft für ME/CFS. February 1, 2018. Retrieved July 21, 2019.
  14. ↑ "DEGAM veröffentlicht revidierte Fassung der Leitlinie »Müdigkeit«". Deutsche Gesellschaft für ME/CFS. May 22, 2018. Retrieved July 21, 2019.
  15. ↑ "Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag". Deutsche Gesellschaft für ME/CFS. March 7, 2020. Retrieved July 7, 2020.
  16. ↑ "Log into Facebook". Facebook. Retrieved March 7, 2021.
  17. ↑ "Koalitionsvertrag 2021-2025" (in Deutsch). 2021. p. 83. Retrieved August 23, 2024.
  18. ↑ "Nationale Klinische Studiengruppe: Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom starten". Deutsche Gesellschaft für ME/CFS. November 10, 2022. Retrieved August 23, 2024.
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