Germany

Demographics
It's estimated that around 240.000 people living in Germany suffer from Myalgic Encephalomyelitis. This represents a prevalence of 0.3% of the German population.

Research initiatives

 * Charité Berlin

Researchers

 * Patricia Grabowski
 * Anna Dorothea Hoeck (retired)
 * 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'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 pwME.
 * 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
How many hospitals & doctors, which diagnose and treat ME (estimate): Rehabilitation offers for ME sufferers:

National groups

 * Bündnis ME/CFS
 * Deutsche Gesellschaft für ME/CFS
 * 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

 * Wilfried Bieger, Munich
 * Wolfgang Huber, Heidelberg
 * Andreas Grothusen, Hamburg

Clinics

 * Charité Fatigue Centrum, Berlin
 * Kinderklinik Schwabing der Technischen Universität München, München
 * Spezialklinik Neukirchen, Neukirchen
 * Uniklinikum Erlangen, Erlangen

Helpful 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 (in English: International Consensus Primer for Medical Practioners)

Blogs

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

Forums

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