Deutsche Gesellschaft für ME/CFS

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. 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. 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
The German Association organized the first German #MillionsMissing events in 2016 and 2017 and partners with MillionsMissing Germany for the protests since 2018. It also hosts Unrest screenings in Germany and organized the German premiere.

The German Association organized its first ME/CFS conference (accredited for CME) 2019 in Hamburg. Together with Charité Berlin and TU Munich, the German Association organized the first online continuing education course on ME/CFS for physicians in 2021.

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

The organization successfully lodged a complaint against the methodological shortcomings 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.

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. A first roundtable with patient organizations and the Ministry of Health and Research was held in December 2020.

A medical advisory board was appointed in 2022.

Interviews and media reports

 * May 2019, ARD: "Mit 19 Jahren Pflegefall"
 * May 2019, Tagesschau: "Fragen und Antworten: Permanent erschöpft – warum?"
 * September 2018, WDR: "CFS: Keine eingebildete Krankheit"
 * June 2018, BR: "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"

Videos

 * June 2019, Presentations at the first ME/CFS conference in Hamburg
 * May 2019, Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin
 * May 2019, Talk by chairman Sebastian Musch at #MillionsMissing in Berlin
 * May 2019, Talk by chairman Sebastian Musch at #MillionsMissing in Munich
 * May 2018, Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin
 * May 2018, Talk by chairman Sebastian Musch at #MillionsMissing in Berlin
 * September 2016, #MillionsMissing in Hamburg

Photos

 * June 2019, ME/CFS conference in Hamburg
 * September 2016, #MillionsMissing in Hamburg

Online presence

 * Website
 * Facebook
 * Twitter
 * Vimeo
 * Instagram
 * Newsletter