Germany
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Demographics[edit | edit source]
It's estimated that around 240.000 people living in Germany suffer from Myalgic Encephalomyelitis.[1] 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
- Anna Dorothea Hoeck (retired)
- 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's based on a literature review that focused on discredited behavioral studies. It issues recommendations that are not evidence-based and might be harmful to people with myalgic encephalomyelitis.
- 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]
Social security and disability benefits[edit | edit source]
Access to care[edit | edit source]
How many hospitals & doctors, which diagnose and treat ME (estimate): Rehabilitation offers for ME sufferers:
Patient groups[edit | edit source]
National groups[edit | edit source]
- Bündnis ME/CFS
- Deutsche Gesellschaft für ME/CFS
- 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]
- Wilfried Bieger, Munich
- Wolfgang Huber, Heidelberg
- Andreas Grothusen, Hamburg
Clinics[edit | edit source]
- Charité Fatigue Centrum, Berlin
- Kinderklinik Schwabing der Technischen Universität München, München
- Spezialklinik Neukirchen, Neukirchen
- Uniklinikum Erlangen, Erlangen
Documents in German[edit | edit source]
- The website of the Charité Fatigue Centrum at the Charité Berlin offers information for patients and doctors.[6]
- The Deutsche Gesellschaft für ME/CFS cooperated with the Charité Berlin to offer information for medical professionals.[7]
- Bell-Skala[8] (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)
Blogs[edit | edit source]
- CFS-Ladestation
- Gwendolin (vlog)
- ME/CFS aktuell (archive)
- ME aktuell
- ME-Information
- ME vs. CFS
Forums[edit | edit source]
See also[edit | edit source]
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". www.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.
- ↑ 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). Cite has empty unknown parameter:
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