From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

Demographics[edit | edit source]

It's estimated that around 250.000 people living in Germany suffer from Myalgic Encephalomyelitis,[1] including 40,000 children and adolescents. This represents a prevalence of 0.3% of the German population.

Research[edit | edit source]

Research initiatives[edit | edit source]

Researchers[edit | edit source]

Medical guidelines[edit | edit source]

  • Müdigkeit – The German guideline "Tiredness" includes a chapter on ME/CFS.[2][3] The patient organization German Association for ME/CFS successfully lodged a complaint against the methodological shortcomings of the guideline in 2018. This prevented the guideline from issuing binding treatment recommendations with no scientific evidence (GET and CBT) for ME/CFS.[4] The chapter on ME/CFS was officially downgraded to the "authors' opinion".
  • Funktionelle Körperbeschwerden – ME/CFS is included in the German guideline "Functional disorders", although this is not in line with the classification by the WHO.
  • "Erkenntnisstand zum Chronic Fatigue Syndrome" The Robert Koch Institute (RKI) is the government’s central scientific institution in the field of biomedicine. It issued a report on ME/CFS in 2015. It was based on a literature review that focused on discredited behavioral studies. It issued recommendations that were not evidence-based and possibly harmful to people with myalgic encephalomyelitis. The report was deleted from the website in autumn 2019 (archived version here ).
  • Leitlinien für die sozialmedizinische Begutachtung – Sozialmedizinische Beurteilung bei psychischen und Verhaltensstörungen – The Deutsche Rentenversicherung (German pension insurance) includes ME/CFS in its guideline "Socio-medical assessment of mental and behavioral disorders".[5]

Petitions[edit | edit source]

The SignforMECFS petition is calling for healthcare for ME/CFS patients, funding for medical research, and political recognition.[6]

Social security and disability benefits[edit | edit source]

Access to care[edit | edit source]

There are no rehabilitation offers for ME sufferers.

Patient groups[edit | edit source]

National groups[edit | edit source]

Regional groups[edit | edit source]

Notable patients[edit | edit source]

Notable advocates[edit | edit source]

Clinicians[edit | edit source]

Clinics[edit | edit source]

Documents in German[edit | edit source]

News and media[edit | edit source]

Blogs[edit | edit source]

Forums[edit | edit source]

Books[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. Scheibenbogen et al. (2014), Chronisches Fatigue-Syndrom. Heutige Vorstellung zur Pathogenese, Diagnostik und Therapie, tägl. prax. 55, 567–574, Hans Marseille Verlag GmbH, München.
  2. "AWMF: Detail". Retrieved August 14, 2019.
  3. "New German guideline for ME published today". Science for ME. Retrieved August 14, 2019.
  4. "DEGAM veröffentlicht revidierte Fassung der Leitlinie »Müdigkeit«". Deutsche Gesellschaft für ME/CFS. May 22, 2018. Retrieved August 14, 2019.
  5. admin (June 5, 2019). "Sozialmedizinische Begutachtung". DRV (in Deutsch). Retrieved August 15, 2019.
  6. "signFORmecfs" (in Deutsch). Retrieved October 22, 2021.
  7. Stigler, Rolf-Dietrich. "Charité Fatigue Centrum". Charité Fatigue Centrum (in Deutsch). Retrieved August 15, 2019.
  8. "Informationen für Ärztinnen und Ärzte – Deutsche Gesellschaft für ME/CFS". Retrieved August 15, 2019.
  9. "Bell-Skala" (PDF).