Germany

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

Research initiatives

 * Charité Fatigue Centrum
 * MRI Chronische Fatigue Centrum

Researchers

 * Patricia Grabowski
 * Bhupesh Prusty
 * Carmen Scheibenbogen
 * Franziska Sotzny
 * Helma Freitag
 * Madlen Löbel
 * Thomas Harrer
 * Uta Behrends

Medical guidelines

 * Müdigkeit – The German guideline "Tiredness" includes a chapter on ME/CFS. 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. 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".

Access to care
There are no rehabilitation offers for ME sufferers.

National groups

 * Deutsche Gesellschaft für ME/CFS
 * Elterninitiative ME/CFS-kranke Kinder und Jugendliche
 * Fatigatio e.V.
 * Lost Voices Stiftung
 * #MillionsMissing Deutschland

Regional groups

 * Netzwerk-CFS (Hannover)

Notable patients

 * Roger Cicero
 * Joanne
 * Jens Höing
 * Olaf Bodden
 * Sabine Moussier

Clinicians

 * Andreas Grothusen, Hamburg – Doesn't take on new patients

Clinics

 * 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

 * The website of the Charité Fatigue Centrum at the Charité Berlin offers information for patients and doctors.
 * The Deutsche Gesellschaft für ME/CFS cooperated with the Charité Berlin to offer information for medical professionals.
 * Bell-Skala (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

 * ME/CFS aktuell (archive)
 * ME aktuell
 * ME-Information (archive)
 * ME vs. CFS (archive)

Forums

 * CFS-Treffpunkt
 * ME/CFS – die Plauderecke für selbst Betroffene
 * ME-Forum