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[[File:Germany_flag.svg.png|320px|right|thumb|'''Germany''']] ==Demographics== It's estimated that around 250.000 people living in Germany suffer from [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]],<ref>Scheibenbogen et al. (2014), ''Chronisches Fatigue-Syndrom. Heutige Vorstellung zur Pathogenese, Diagnostik und Therapie, ''tägl. prax. 55, 567–574, Hans Marseille Verlag GmbH, München.</ref> including 40,000 children and adolescents. This represents a prevalence of 0.3% of the German population. ==Research== ===Research initiatives=== * [https://cfc.charite.de/ Charité Fatigue Centrum] * [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/spezialgebiete-kinder-klinik/chronische-fatigue/ MRI Chronische Fatigue Centrum] ===Researchers=== *[[Patricia Grabowski]] *[[Bhupesh Prusty]] *[[Carmen Scheibenbogen]] *[[Franziska Sotzny]] *[[Helma Freitag]] *[[Madlen Löbel]] *[[Thomas Harrer]] *[[Uta Behrends]] ==Medical guidelines== * [http://www.awmf.org/leitlinien/detail/ll/053-002.html Müdigkeit] – The German guideline "Tiredness" includes a chapter on ME/CFS.<ref>{{Cite web | url=https://www.awmf.org/leitlinien/detail/ll/053-002.html | title = AWMF: Detail | website = awmf.org|access-date=2019-08-14}}</ref><ref>{{Cite web | url=https://www.s4me.info/threads/new-german-guideline-for-me-published-today.2202/ | title = New German guideline for ME published today|website=Science for ME|language=en-US|access-date=2019-08-14}}</ref> The patient organization [[Deutsche Gesellschaft für ME/CFS|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 ([[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) for ME/CFS.<ref>{{Cite web | url=https://www.mecfs.de/degam-veroeffentlicht-revidierte-fassung-der-leitlinie-muedigkeit/ | title = DEGAM veröffentlicht revidierte Fassung der Leitlinie »Müdigkeit« | date = 2018-05-22 | website = Deutsche Gesellschaft für ME/CFS|access-date=2019-08-14}}</ref> The chapter on ME/CFS was officially downgraded to the "authors' opinion". * [https://www.awmf.org/leitlinien/detail/ll/051-001.html 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 ([https://web.archive.org/web/20180919061820/https://www.rki.de/DE/Content/Gesundheitsmonitoring/Gesundheitsberichterstattung/GesundAZ/Content/C/Chron_Fatigue_Syndrom/Inhalt/CFS_Erkenntnisstand_2015.pdf?__blob=publicationFile archived version here] ). * [https://www.deutsche-rentenversicherung.de/SharedDocs/Downloads/DE/Experten/infos_fuer_aerzte/begutachtung/empfehlung_psychische_stoerungen_2006_pdf.pdf?__blob=publicationFile&v=1 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".<ref>{{Cite web | url=https://www.deutsche-rentenversicherung.de/DRV/DE/Experten/Infos-fuer-Aerzte/Begutachtung/begutachtung.html | title = Sozialmedizinische Begutachtung | last = admin | date = 2019-06-05 | website = DRV|language=de|access-date=2019-08-15}}</ref> ==Petitions== The [[SignforMECFS]] petition is calling for healthcare for ME/CFS patients, funding for medical research, and political recognition.<ref>{{Cite web | url=https://signformecfs.de/ | title = signFORmecfs|language=de-DE|access-date=2021-10-22}}</ref> ==Social security and disability benefits== ==Access to care== There are no rehabilitation offers for ME sufferers. ==Patient groups== ===National groups=== * [[Deutsche Gesellschaft für ME/CFS]] * [[Elterninitiative ME/CFS-kranke Kinder und Jugendliche München|Elterninitiative ME/CFS-kranke Kinder und Jugendliche]] * [[Fatigatio e.V.]] * [[Lost Voices Stiftung]] * [[MillionsMissing Deutschland|#MillionsMissing Deutschland]] ===Regional groups=== * [http://www.netzwerk-cfs.de/ Netzwerk-CFS] (Hannover) ==Notable patients== * [[Roger Cicero]] * [[Joanne]] * [[Jens Höing]] * [[Olaf Bodden]] * [[Sabine Moussier]] * [[Marina Weisband]] ==Notable advocates== ==Clinicians== * [https://www.drgrothusen.de/ Andreas Grothusen], Hamburg – Doesn't take on new patients ==Clinics== * [https://cfc.charite.de/ 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 * [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/spezialgebiete-kinder-klinik/chronische-fatigue/ MRI Chronisches Fatigue Centrum], Munich – Outpatient clinic for children, adolescents and young people up to age 25 * [http://www.spezialklinik-neukirchen.de/ Spezialklinik Neukirchen], Neukirchen – Clinic for "environmental illness" == Documents in German == * The website of the Charité Fatigue Centrum at the [[Charité Berlin]] offers information for [https://cfc.charite.de/#c30483525 patients] and [https://cfc.charite.de/#c30483518 doctors].<ref>{{Cite web | url=https://cfc.charite.de/ | title = Charité Fatigue Centrum | last = Stigler | first = Rolf-Dietrich|website=Charité Fatigue Centrum|language=de|access-date=2019-08-15}}</ref> * The [[Deutsche Gesellschaft für ME/CFS]] cooperated with the Charité Berlin to offer [https://www.mecfs.de/was-ist-me-cfs/informationen-fuer-aerztinnen-und-aerzte/ information for medical professionals].<ref>{{Cite web | url=https://www.mecfs.de/was-ist-me-cfs/informationen-fuer-aerztinnen-und-aerzte/ | title = Informationen für Ärztinnen und Ärzte – Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref> * [http://cfs-aktuell.de/Bell-Skala.pdf Bell-Skala]<ref>{{Cite web | url=http://cfs-aktuell.de/Bell-Skala.pdf | title=Bell-Skala | last = | first = | authorlink = | date = | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref> (in English: [[Bell CFIDS disability scale|Bell disability scale]]) * [http://www.cfs-aktuell.de/Konsensdokument.pdf Kanadische Konsenskriterien] (in English: [[Canadian Consensus Criteria]]) * [http://www.cfs-aktuell.de/ICC.pdf Internationale Konsenskriterien] (in English: [[International Consensus Criteria]]) * [https://www.docdroid.net/LO9RJB9/me-icc-leitlinie.pdf Internationale Konsensleitlinie für Ärzte (IC-Primer)] (in English: [http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf International Consensus Primer for Medical Practioners]) ==News and media== *[[List of news articles on ME and CFS/de|List of news articles on ME and CFS]] published in German ==Blogs == * [http://www.cfs-aktuell.de/ ME/CFS aktuell] (archive) * [https://www.me-aktuell.de/ ME aktuell] * [https://www.me-information.de/ ME-Information] (archive) * [https://meversuscfs.blogspot.com ME vs. CFS] (archive) * [https://www.fasynation.de/ Fasynation] == Forums == * [http://www.cfs-treffpunkt.de CFS-Treffpunkt] * [https://www.facebook.com/groups/292707130807803/?ref=bookmarks ME/CFS – die Plauderecke für selbst Betroffene] * [https://forum.me-aktuell.de/ ME-Forum] ==Books== *[[:Category:Deutsche books|Deutsche books]] ==See also== *[[List of news articles on ME and CFS/de|List of news articles on ME and CFS]] (in German) *[[Glossary/de|Glossary]] (in German) *[[:Category:German-language articles|German-language articles (category)]] * [[EUROMENE]] ==References== {{Reflist}} [[Category:Countries]] [[Category:Europe]] [[Category:Germany]]
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