Germany: Difference between revisions
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==Medical guidelines== | ==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= | * [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. | * [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] ). | * "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> | * [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== | ==Petitions== | ||
The [[SignforMECFS]] petition is calling for healthcare for ME/CFS patients, funding for medical research, and political recognition.<ref>https:// | 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== | ==Social security and disability benefits== | ||
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* [[Olaf Bodden]] | * [[Olaf Bodden]] | ||
* [[Sabine Moussier]] | * [[Sabine Moussier]] | ||
* [[Marina Weisband]] | |||
==Notable advocates== | ==Notable advocates== | ||
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== Documents in German == | == 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 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> | * 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 | * [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/Konsensdokument.pdf Kanadische Konsenskriterien] (in English: [[Canadian Consensus Criteria]]) | ||
* [http://www.cfs-aktuell.de/ICC.pdf Internationale Konsenskriterien] (in English: [[International Consensus Criteria]]) | * [http://www.cfs-aktuell.de/ICC.pdf Internationale Konsenskriterien] (in English: [[International Consensus Criteria]]) | ||
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* [https://www.me-information.de/ ME-Information] (archive) | * [https://www.me-information.de/ ME-Information] (archive) | ||
* [https://meversuscfs.blogspot.com ME vs. CFS] (archive) | * [https://meversuscfs.blogspot.com ME vs. CFS] (archive) | ||
* [https://www.fasynation.de/ Fasynation] | |||
== Forums == | == Forums == | ||
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* [https://www.facebook.com/groups/292707130807803/?ref=bookmarks ME/CFS – die Plauderecke für selbst Betroffene] | * [https://www.facebook.com/groups/292707130807803/?ref=bookmarks ME/CFS – die Plauderecke für selbst Betroffene] | ||
* [https://forum.me-aktuell.de/ ME-Forum] | * [https://forum.me-aktuell.de/ ME-Forum] | ||
==Books== | |||
*[[:Category:Deutsche books|Deutsche books]] | |||
==See also== | ==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]] | * [[EUROMENE]] | ||
Latest revision as of 08:00, November 30, 2022
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).
