Germany
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]
- Patricia Grabowski
- Bhupesh Prusty
- Carmen Scheibenbogen
- Franziska Sotzny
- Helma Freitag
- Madlen Löbel
- Thomas Harrer
- Uta Behrends
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]
- Deutsche Gesellschaft für ME/CFS
- Elterninitiative ME/CFS-kranke Kinder und Jugendliche
- Fatigatio e.V.
- Lost Voices Stiftung
- #MillionsMissing Deutschland
Regional groups[edit | edit source]
- Netzwerk-CFS (Hannover)
Notable patients[edit | edit source]
Notable advocates[edit | edit source]
Clinicians[edit | edit source]
- Andreas Grothusen, Hamburg – Doesn't take on new patients
Clinics[edit | edit source]
- Charité Fatigue Centrum, Berlin – The outpatient clinic offers a one-time appointment for diagnosis for ME/CFS patients from Berlin/Brandenburg, if they suffer from frequent infections
- MRI Chronisches Fatigue Centrum, Munich – Outpatient clinic for children, adolescents and young people up to age 25
- Spezialklinik Neukirchen, Neukirchen – Clinic for "environmental illness"
Documents in German[edit | edit source]
- The website of the Charité Fatigue Centrum at the Charité Berlin offers information for patients and doctors.[7]
- The Deutsche Gesellschaft für ME/CFS cooperated with the Charité Berlin to offer information for medical professionals.[8]
- Bell-Skala[9] (in English: Bell disability scale)
- Kanadische Konsenskriterien (in English: Canadian Consensus Criteria)
- Internationale Konsenskriterien (in English: International Consensus Criteria)
- Internationale Konsensleitlinie für Ärzte (IC-Primer) (in English: International Consensus Primer for Medical Practioners)
News and media[edit | edit source]
- List of news articles on ME and CFS published in German
Blogs[edit | edit source]
- ME/CFS aktuell (archive)
- ME aktuell
- ME-Information (archive)
- ME vs. CFS (archive)
- Fasynation
Forums[edit | edit source]
Books[edit | edit source]
See also[edit | edit source]
- List of news articles on ME and CFS (in German)
- Glossary (in German)
- German-language articles (category)
- EUROMENE
References[edit | edit source]
- ↑ Scheibenbogen et al. (2014), Chronisches Fatigue-Syndrom. Heutige Vorstellung zur Pathogenese, Diagnostik und Therapie, tägl. prax. 55, 567–574, Hans Marseille Verlag GmbH, München.
- ↑ "AWMF: Detail". awmf.org. Retrieved August 14, 2019.
- ↑ "New German guideline for ME published today". Science for ME. Retrieved August 14, 2019.
- ↑ "DEGAM veröffentlicht revidierte Fassung der Leitlinie »Müdigkeit«". Deutsche Gesellschaft für ME/CFS. May 22, 2018. Retrieved August 14, 2019.
- ↑ admin (June 5, 2019). "Sozialmedizinische Begutachtung". DRV (in Deutsch). Retrieved August 15, 2019.
- ↑ "signFORmecfs" (in Deutsch). Retrieved October 22, 2021.
- ↑ Stigler, Rolf-Dietrich. "Charité Fatigue Centrum". Charité Fatigue Centrum (in Deutsch). Retrieved August 15, 2019.
- ↑ "Informationen für Ärztinnen und Ärzte – Deutsche Gesellschaft für ME/CFS". Retrieved August 15, 2019.
- ↑ "Bell-Skala" (PDF).
