MEpedia - User contributions [en]

Uta Behrends

2024-09-08T09:53:51Z

Hannosch:Info updated.

{{DISPLAYTITLE:Uta Behrends}}
{{NeedsImage}}
Prof. Dr. Uta Behrends is a professor for pediatric infectiology and immunobiology.<ref>{{Cite web|url=http://www.professoren.tum.de/behrends-uta/ | title = Professorenprofile: Behrends_Uta|website=professoren.tum.de|access-date=2019-07-22}}</ref> At the Children's Polyclinic of the Technical University of Munich (TUM), Prof. Dr. med. Uta Behrends heads the MRI Chronic Fatigue Center (MCFC) for children and young people up to the age of 21. The focus of care and research is on post-infectious fatigue and ME/CFS after mononucleosis caused by Epstein-Barr virus (EBV) and after COVID-19 caused by SARS-CoV-2 (Long COVID).<ref>{{Cite web|url=https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/spezialgebiete-kinder-klinik/chronische-fatigue/ | title = Chronische Fatigue, ME/CFS, Long Covid|website=München Klinik|language=de|access-date=2021-06-12}}</ref>

Prof. Dr. Behrends is also a chairperson of the first parents' initiative in Germany: [[Elterninitiative ME/CFS-kranke Kinder und Jugendliche München|Elterninitiative ME/CFS-kranke Kinder und Jugendliche München e.V.]]<ref>{{Cite web|url=https://www.mecfs-kinder-muc.de/ueber-uns/ | title = Über uns|website=Elterninitiative ME/CFS-kranke Kinder und Jugendliche München|language=de-DE|access-date=2020-08-12}}</ref>
[[Category:Researchers]]
[[Category:Germany researchers]]
[[Category:Clinicians]]
[[Category:German clinicians]]

== Notable studies ==
* 2017, Serological profiling of the [[Epstein-Barr virus|EBV]] immune response in [[Chronic Fatigue Syndrome]] using a peptide microarray [http://journals.plos.org/plosone/article/authors?id=10.1371/journal.pone.0179124 (Full Text)]
*2021, European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe<ref name="Nacul2021">{{Cite journal | last =Nacul | first = Luis | authorlink = Luis Nacul | last2 = Authier | first2=François Jérôme | authorlink2 = François Jérôme Authier | last3=Scheibenbogen | first3=Carmen | author-link3 = Carmen Scheibenbogen | last4 = Lorusso | first4 = Lorenzo | authorlink4 = Lorenzo Lorusso | last5 = Helland | first5 = Ingrid Bergliot | author-link5 = | last6 = Martin | first6 = Jose Alegre | authorlink6 = José Alegre | last7 = Sirbu | first7 = Carmen Adella | last8 = Mengshoel | first8 = Anne Marit | last9 = Polo | first9 = Olli | first10=Uta | last10 = Behrends | authorlink10 = Uta Behrends | first11 = Henrik | last11 = Nielsen | first12 = Patricia | last12 = Grabowski | authorlink12 = Patricia Grabowski | first13 = Slobodan | last13 = Sekulic | first14 = Nuno | last14 = Sepulveda | first15 = Fernando | last15 = Estévez-López | first16 =Pawel | last16 = Zalewski | first17 = Derek F.H. | last17 = Pheby | author-link17 = Derek Pheby | first18 = Jesus | last18 = Castro-Marrero | author-link18 = Jesus Castro-Marrero | first19 = Giorgos K. | last19 = Sakkas | first20 = Enrica | last20 = Capelli | first21 = Ivan | last21 = Brundsdlund | first22 = John | last22 = Cullinan | first23 = Angelika | last23 = Krumina | first24 = Jonas | last24 = Bergquist | authorlink24 = Jonas Bergquist | first25 = Modra | last25 = Murovska | first26 = Ruud C.W. | last26 = Vermuelen | authorlink26 = Ruud Vermeulen | first27 = Eliana M. | last27 = Lacerda | authorlink27 = Eliana Lacerda | others=(EUROMENE) | date = May 2021 | title = European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8161074|journal=Medicina|language=en|volume=57|issue=5|pages=510|doi=10.3390/medicina57050510|pmc=PMC8161074|pmid=34069603|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8161074 (Full text)]

== Articles ==
* 2019, [https://www.dsai.de/fileadmin/user_upload/Newsletter/dsai_02495_Newsletter_print_24_2019-11-21-PRINT.pdf "Das Chronische Fatigue Syndrom (CFS) bei Kindern und Jugendlichen"]
* 2019, [https://cfc.charite.de/fileadmin/user_upload/microsites/kompetenzzentren/cfc/Landing_Page/CFS_Heft_9.pdf "Chronisches Fatigue Syndrom/CFS – Praktische Empfehlungen zur Diagnostik und Therapie"]

== Talks and interviews ==
* June 2019, [https://vimeo.com/showcase/6585192/video/373564692 "Munich Register for Children, Adolescents, and Young Adults with Postinfectious CFS"] at the ME/CFS-Forum in Hamburg<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/ | title = ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Videos ==
* May 2019, 3sat: [https://www.3sat.de/wissen/nano/chronische-erschoepfung-100.html "Kampf gegen die chronische Erschöpfung"]

== Online presence ==
* [http://www.professoren.tum.de/behrends-uta/ Prof. Behrends at Technical University Munich]
* [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/spezialgebiete-kinder-klinik/chronische-fatigue/ MRI Chronisches Fatigue Centrum (MCFC)]
* [https://www.mecfs-kinder-muc.de/ Elterninitiative ME/CFS-kranke Kinder und Jugendliche München e.V.]

== See also ==
* [[Charité Berlin]]
* [[Deutsche Gesellschaft für ME/CFS]]
* [[MillionsMissing Deutschland]]

== References ==
{{Reflist}}

MillionsMissing Deutschland

2024-09-08T09:52:10Z

Hannosch:/* Videos */ Info updated

[[File:MillionsMissing Germany.png|thumb|Protest in Berlin 2019 – more at millionsmissing.de]]
'''#MillionsMissing Deutschland''' (#MillionsMissing Germany) was founded in 2018.<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/ | title = Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref> It's a [[Germany|German]] affiliate group of [[The MEAction Network]]. #MillionsMissing Germany is run by a network of dedicated volunteers.
==Aims==
Its aim is to work towards health equity for people with [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/ | title = Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

==Events==
In May 2018 #MillionsMissing Germany organized [[Millions Missing protests|#MillionsMissing protests]] in Berlin and Gütersloh with support of the [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]] and cooperated with a third protest, hosted by the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover.<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/ | title = Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing | date = 2018-05-12 | website = #MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

In May 2019 #MillionsMissing Germany organized #MillionsMissing protests in Berlin, Munich and Halle (Saale) with support of the German Association for ME/CFS. Later that month #MillionsMissing Germany held a protest in front of the German Bundestag (national parliament) on the occasion of the 70th anniversary of the Grundgesetz (German constitution).<ref>{{Cite web|url=https://www.millionsmissing.de/2019/05/20/70-jahre-grundgesetz-art-1-die-w%C3%BCrde-des-menschen-ist-unantastbar/ | title = 70 Jahre Grundgesetz – Art. 1: »Die Würde des Menschen ist unantastbar.« | date = 2019-05-20 | website = #MillionsMissing Deutschland|language=de-DE|access-date=2019-07-22}}</ref>

<nowiki>#</nowiki>MillionsMissing Germany organized a Kudoboard to thank the health policy spokeswoman of the Green Party Maria Klein-Schmeink, who made an inquiry about ME/CFS in the Bundestag. [https://www.kudoboard.com/boards/4YSSVj1y?fbclid=IwAR1J3s3sAkjBDNqpBsidJoYrJqexVbOtROPvHVdn2VE6EONKY_5l6cNNNh4 The Kudoboard] contained over 150 messages from pwME and was presented in printed form in the Bundestag.<ref>{{Cite web|url=https://www.klein-schmeink.de/aktuelles/meldung/treffen-mit-me-cfs-betroffenen-in-berlin | title = Treffen mit ME/CFS-Betroffenen in Berlin|website=Maria Klein-Schmeink|language=de-DE|access-date=2020-07-07}}</ref>

Together with the German Association for ME/CFS and MP Martina Stamm-Fibich, #MillionsMissing Germany organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web | title = Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag | url =https://www.mecfs.de/parlament-fachgespraech/|website=Deutsche Gesellschaft für ME/CFS | date = 2020-03-07|access-date=2020-07-07}}</ref>

Due to the corona crisis in 2020, #MillionsMissing Germany had to cancel the #MillionsMissing visibility actions in nine cities and organized a postcard campaign to health minister Jens Spahn and other politicians instead.<ref>{{Cite web|url=https://www.millionsmissing.de/2020/05/01/jens-spahn-sie-haben-post/ | title = »Jens Spahn, Sie haben Post !« | date = 2020-05-01 | website = #MillionsMissing Deutschland|language=de-DE|access-date=2020-07-07}}</ref>

In December 2022 #MillionsMissing Germany organized a [https://www.facebook.com/dg.mecfs/posts/pfbid02sAZT7xJrahdbCjYvARW9AcMkWqeXom4FYrCcQvQiFeY7PixF576CkoxR6rEvwmafl postcard campaign] to the German Institute for Quality and Efficiency in Health Care (IQWIG): "All I want for Christmas is an IQWiG report on ME/CFS without harmful recommendations."

<nowiki>#</nowiki>MillionsMissing Germany organized several screenings of the documentary [[Unrest]] together with the German Association for ME/CFS.

==Interviews and articles==
* May 2020, Tagesspiegel: [https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html "Jens Spahn, Sie haben Post!"]<ref>{{Cite web|url=https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html | title = „Jens Spahn, Sie haben Post!“ | website = tagesspiegel.de|language=de|access-date=2020-07-07}}</ref>
* June 2018, BR: [https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]<ref>{{Cite news | url=https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html | title = Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht {{!}} | last = | first = | date = 2018-06-26|access-date=2018-08-16|language=|work=Bayerischer Rundfunk|archive-url=|archive-date=|url-status=}}</ref>
* May 2018, rbb: [https://www.youtube.com/watch?v=TD-wW3Q9rJg "Chronisches Erschöpfungssyndrom anerkennen"]

==Videos==
* May 2021, [https://www.youtube.com/watch?v=gO7XjiLOcCA #MillionsMissing Germany Trailer 2021]
* May 2020, [https://www.youtube.com/watch?v=lqQsmoa6vbY #MillionsMissing Germany Trailer 2020]
* August 2019, [https://www.youtube.com/watch?v=qM-BTK80lk8 "Eine Krankheit im Verborgenen"]
* May 2019, [https://www.youtube.com/watch?v=FweKtoclHAs Protest in front of the German Bundestag]
* May 2019, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=BSBmHW3YKeM&list=PLhGOtt957iy0uxFlXCfsIju-lRrsKF_6K Berlin], [https://www.youtube.com/watch?v=35bDFP0qgcg&list=PLhGOtt957iy3IEvGkE2mQZxcDyWWYSWz9 Halle] and [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&list=PLhGOtt957iy3mQKg4upWhKKL1LYJqNCZ1 Munich]
* May 2019, [https://www.youtube.com/watch?v=TbvWKNCavTU MillionsMissing Germany Trailer 2019]
* May 2018, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=PhOOZbqSrIQ&list=PLhGOtt957iy1A4HC_fXnMIHX4wYZUp964 Berlin] and [https://www.youtube.com/watch?v=PrIDZf3JLTE&list=PLhGOtt957iy30ElZr1M6W1eYa8Y9ZvJ4s Gütersloh]

==Photos==
* May 2019, [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=2115237398774337&__xts__%5B0%5D=68.ARDE0CFHezf539hKtdQRmy1842IYniMjPrdZWVTMTIR0R7gJRZFCgN4CorMBRf8SvX_Q0XofqmTnExbcbdA4dP_R0bL22xzYonRm4KLoTs6oQ9FTZLF-uk2ZMSMh8lESK7XjzssnknAGfHiiaHdNp7L8VhUSorgV7787VV92pKkDtSiAxYspSi_mEqGx8ezOcE5nGmt_JdhBeT89LEepzNHZX1OmKc0_Ah41CNHbJnsfKMZFYaTacue_IeNV7w5_IgvhftYexaE45JA8yoW-gLebO-ZWTFOuAlK_yfV23g80NyK7K3MhtOY5gSn_rxOYRHjqV3Xqbv-SDclcqvHRaGDhB5ZMgOrt5w2ULXtCIlR0DOlj8Z58l1TLhzxcDVDYn6Z2CrpeunCn2JMHgLJchJxg9zZvX_P3IDRdGJDhE_A7nqwW70HKC7Q7tUv5y69i7Z3Fmtppdnb0Igoe9f9IdHnHER5Y7D3OcZ2m_HYFVl_ltMh0O569VxwpId13oNK8OhE_9XiwyYAzmDoCfNavSc3w1YEBolrqz28tO7JnuOKtKoQmf3JsFOOoxnHNNUJNml6ctONTWSIacUE01yjGLQ_6ahC2y5sE5bzH9BurfRpdqUpOyKkFxqYmuFclRwsLcpYex8kE2rQr2rFiIlLppxB-bh_J4fBiq9UF1wMN6gl5pWMou1UTA0xj2s-P5NlkI_XquXThNjLb1IS7DrpPUBDTs2G4KWLLLp8uHo0Ex883MUl5bVkN-X4UJAhWG-GKA0hW_eMUVtuo7rpbx2drMo9jIRvqZ9IqgHG8MN4RLlQAROoLLL97KEM_56V7ac5qWiph9FfixWwstzjhh14XIZRcY-y2esdjiw6HuDQhegrVkMKxt-rj7eQVa2Y&__tn__=-UC-R Protest in front of the German Bundestag]
* May 2019, [https://meaction.smugmug.com/MillionsMissing-2019/Europe/Germany #MillionsMissing visibility actions in Berlin, Munich and Halle]
* May 2018, #MillionsMissing visibility actions in [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Berlin/ Berlin], [https://meaction.smugmug.com/MillionsMissing-2018/Europe/G%C3%BCtersloh Gütersloh] and [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Hannover Hannover]
* 2018 Campaign: [https://www.facebook.com/media/set/?set=a.1867275806903832&type=3 "Ich will mein Leben zurück, Jens Spahn"] (Jens Spahn was the minister of health)

==Online presence==
* [https://www.millionsmissing.de Website]

* [https://www.facebook.com/mmissinggermany/ Facebook page]

* [https://twitter.com/MMissingGermany Twitter]

* [https://www.youtube.com/channel/UCEaUZZDxY72llnlHmpZ2dJg/videos YouTube channel]
* [https://www.instagram.com/mmissinggermany/?hl=de Instagram]

* [https://www.flickr.com/photos/millionsmissingdeutschland/ flickr]

==See also==
* [[Millions Missing protests|#MillionsMissing protests]]
* [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]
[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

MillionsMissing Deutschland

2024-09-08T09:25:57Z

Hannosch:Some info updated.

[[File:MillionsMissing Germany.png|thumb|Protest in Berlin 2019 – more at millionsmissing.de]]
'''#MillionsMissing Deutschland''' (#MillionsMissing Germany) was founded in 2018.<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/ | title = Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref> It's a [[Germany|German]] affiliate group of [[The MEAction Network]]. #MillionsMissing Germany is run by a network of dedicated volunteers.
==Aims==
Its aim is to work towards health equity for people with [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/ | title = Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

==Events==
In May 2018 #MillionsMissing Germany organized [[Millions Missing protests|#MillionsMissing protests]] in Berlin and Gütersloh and supported a third one, hosted by the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover.<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/ | title = Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing | date = 2018-05-12 | website = #MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

In May 2019 #MillionsMissing Germany organized #MillionsMissing protests in Berlin, Munich and Halle (Saale). Later that month a protest in front of the German Bundestag (national parliament) took place.<ref>{{Cite web|url=https://www.millionsmissing.de/2019/05/20/70-jahre-grundgesetz-art-1-die-w%C3%BCrde-des-menschen-ist-unantastbar/ | title = 70 Jahre Grundgesetz – Art. 1: »Die Würde des Menschen ist unantastbar.« | date = 2019-05-20 | website = #MillionsMissing Deutschland|language=de-DE|access-date=2019-07-22}}</ref>

<nowiki>#</nowiki>MillionsMissing Germany organized a Kudoboard for the health policy spokeswoman of the Green Party Maria Klein-Schmeink, who made an inquiry about ME/CFS in the Bundestag. [https://www.kudoboard.com/boards/4YSSVj1y?fbclid=IwAR1J3s3sAkjBDNqpBsidJoYrJqexVbOtROPvHVdn2VE6EONKY_5l6cNNNh4 The Kudoboard] contained over 150 messages from pwME and was presented in printed form in the Bundestag.<ref>{{Cite web|url=https://www.klein-schmeink.de/aktuelles/meldung/treffen-mit-me-cfs-betroffenen-in-berlin | title = Treffen mit ME/CFS-Betroffenen in Berlin|website=Maria Klein-Schmeink|language=de-DE|access-date=2020-07-07}}</ref>

Together with the German Association for ME/CFS and MP Martina Stamm-Fibich, #MillionsMissing Germany organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web | title = Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag | url =https://www.mecfs.de/parlament-fachgespraech/|website=Deutsche Gesellschaft für ME/CFS | date = 2020-03-07|access-date=2020-07-07}}</ref>

Due to the corona crisis in 2020, #MillionsMissing Germany had to cancel the #MillionsMissing visibility actions in nine cities and organized a postcard campaign to health minister Jens Spahn and other politicians instead.<ref>{{Cite web|url=https://www.millionsmissing.de/2020/05/01/jens-spahn-sie-haben-post/ | title = »Jens Spahn, Sie haben Post !« | date = 2020-05-01 | website = #MillionsMissing Deutschland|language=de-DE|access-date=2020-07-07}}</ref>

In December 2022 #MillionsMissing Germany organized a [https://www.facebook.com/dg.mecfs/posts/pfbid02sAZT7xJrahdbCjYvARW9AcMkWqeXom4FYrCcQvQiFeY7PixF576CkoxR6rEvwmafl postcard campaign] to the German Institute for Quality and Efficiency in Health Care (IQWIG): "All I want for Christmas is an IQWiG report on ME/CFS without harmful recommendations".

<nowiki>#</nowiki>MillionsMissing Germany organized screenings of the documentary [[Unrest]] together with the German Association for ME/CFS.

==Interviews and articles==
* May 2020, Tagesspiegel: [https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html "Jens Spahn, Sie haben Post!"]<ref>{{Cite web|url=https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html | title = „Jens Spahn, Sie haben Post!“ | website = tagesspiegel.de|language=de|access-date=2020-07-07}}</ref>
* May 2019, [https://www.millionsmissing.de/2019/05/29/berichterstattung-%C3%BCber-me-cfs-rund-um-den-12-mai/ List of media reports about the #MillionsMissing events in Germany]
* June 2018, BR: [https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]<ref>{{Cite news | url=https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html | title = Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht {{!}} | last = | first = | date = 2018-06-26|access-date=2018-08-16|language=|work=Bayerischer Rundfunk|archive-url=|archive-date=|url-status=}}</ref>
* May 2018, rbb: [https://www.youtube.com/watch?v=TD-wW3Q9rJg "Chronisches Erschöpfungssyndrom anerkennen"]

==Videos==
* May 2021, [https://www.youtube.com/watch?v=gO7XjiLOcCA #MillionsMissing Germany Trailer 2021]
* May 2020, [https://www.youtube.com/watch?v=lqQsmoa6vbY #MillionsMissing Germany Trailer 2020]
* August 2019, [https://www.youtube.com/watch?v=qM-BTK80lk8 "Eine Krankheit im Verborgenen"]
* May 2019, [https://www.youtube.com/watch?v=FweKtoclHAs Protest in front of the German Bundestag]
* May 2019, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=BSBmHW3YKeM&list=PLhGOtt957iy0uxFlXCfsIju-lRrsKF_6K Berlin], [https://www.youtube.com/watch?v=35bDFP0qgcg&list=PLhGOtt957iy3IEvGkE2mQZxcDyWWYSWz9 Halle] and [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&list=PLhGOtt957iy3mQKg4upWhKKL1LYJqNCZ1 Munich]
* May 2019, [https://www.youtube.com/watch?v=TbvWKNCavTU MillionsMissing Germany Trailer 2019]
* May 2018, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=PhOOZbqSrIQ&list=PLhGOtt957iy1A4HC_fXnMIHX4wYZUp964 Berlin] and [https://www.youtube.com/watch?v=PrIDZf3JLTE&list=PLhGOtt957iy30ElZr1M6W1eYa8Y9ZvJ4s Gütersloh]

==Photos==
* May 2019, [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=2115237398774337&__xts__%5B0%5D=68.ARDE0CFHezf539hKtdQRmy1842IYniMjPrdZWVTMTIR0R7gJRZFCgN4CorMBRf8SvX_Q0XofqmTnExbcbdA4dP_R0bL22xzYonRm4KLoTs6oQ9FTZLF-uk2ZMSMh8lESK7XjzssnknAGfHiiaHdNp7L8VhUSorgV7787VV92pKkDtSiAxYspSi_mEqGx8ezOcE5nGmt_JdhBeT89LEepzNHZX1OmKc0_Ah41CNHbJnsfKMZFYaTacue_IeNV7w5_IgvhftYexaE45JA8yoW-gLebO-ZWTFOuAlK_yfV23g80NyK7K3MhtOY5gSn_rxOYRHjqV3Xqbv-SDclcqvHRaGDhB5ZMgOrt5w2ULXtCIlR0DOlj8Z58l1TLhzxcDVDYn6Z2CrpeunCn2JMHgLJchJxg9zZvX_P3IDRdGJDhE_A7nqwW70HKC7Q7tUv5y69i7Z3Fmtppdnb0Igoe9f9IdHnHER5Y7D3OcZ2m_HYFVl_ltMh0O569VxwpId13oNK8OhE_9XiwyYAzmDoCfNavSc3w1YEBolrqz28tO7JnuOKtKoQmf3JsFOOoxnHNNUJNml6ctONTWSIacUE01yjGLQ_6ahC2y5sE5bzH9BurfRpdqUpOyKkFxqYmuFclRwsLcpYex8kE2rQr2rFiIlLppxB-bh_J4fBiq9UF1wMN6gl5pWMou1UTA0xj2s-P5NlkI_XquXThNjLb1IS7DrpPUBDTs2G4KWLLLp8uHo0Ex883MUl5bVkN-X4UJAhWG-GKA0hW_eMUVtuo7rpbx2drMo9jIRvqZ9IqgHG8MN4RLlQAROoLLL97KEM_56V7ac5qWiph9FfixWwstzjhh14XIZRcY-y2esdjiw6HuDQhegrVkMKxt-rj7eQVa2Y&__tn__=-UC-R Protest in front of the German Bundestag]
* May 2019, [https://meaction.smugmug.com/MillionsMissing-2019/Europe/Germany #MillionsMissing visibility actions in Berlin, Munich and Halle]
* May 2018, #MillionsMissing visibility actions in [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Berlin/ Berlin], [https://meaction.smugmug.com/MillionsMissing-2018/Europe/G%C3%BCtersloh Gütersloh] and [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Hannover Hannover]
* Ongoing campaign: [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=1867275806903832 "Ich will mein Leben zurück"] (I want my life back)

==Online presence==
* [https://www.millionsmissing.de Website]

* [https://www.facebook.com/mmissinggermany/ Facebook page]

* [https://twitter.com/MMissingGermany Twitter]

* [https://www.youtube.com/channel/UCEaUZZDxY72llnlHmpZ2dJg/videos YouTube channel]
* [https://www.instagram.com/mmissinggermany/?hl=de Instagram]

* [https://www.flickr.com/photos/millionsmissingdeutschland/ flickr]

==See also==
* [[Millions Missing protests|#MillionsMissing protests]]
* [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]
[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Mike's EU Marathons

2021-09-12T09:01:11Z

Hannosch:

[[File:Mike's EU Marathons.png|right|Source: mikeseumarathons.eu]]
[[Mike Harley]] has committed to running a marathon in each of the 27 EU countries, in order to raise money for [[Invest in ME]] and biomedical research. The goal is to raise £42,195 to reflect the 42.195km in a marathon.

Mike's main motivation is to help a good friend, Ian, who has [[ME]]. During a different [http://92in92.blogspot.com/ charity fundraiser] in 2014, he had the opportunity to meet other ME patients and their families, which had such a profound effect on Mike that he launched into this more ambitious fundraiser.

Mike states: "I'm not a natural runner by any stretch, being an adopted Bristolian I love a drop of cider and it's fair to say I've had a relatively sedentary lifestyle having completed just 3 half marathons in the last 14 years (I did my first as a fresh faced 18 year old in London in 2001! UK is done, hurrah!) But I am extremely stubborn and whilst this is a hugely physically tough, time consuming and expensive challenge, it's one I'm completely committed to and for a cause to which I feel very connected to."<ref>http://www.mikeseumarathons.eu/the-challenge.html</ref>

For more info on his project as well as his progress, please see [http://www.mikeseumarathons.eu/the-challenge.html Mike's EU Marathons].<ref>http://www.mikeseumarathons.eu/</ref>

==Online presence==
*[http://www.mikeseumarathons.eu/ Website]
*[https://www.facebook.com/mikeseumarathons/?fref=pb Facebook]
*[https://twitter.com/MikesEUmaras?lang=en Twitter]
*[https://www.instagram.com/mikeharley82/ Instagram]
*[https://www.justgiving.com/fundraising/mikeseumarathons Donation page]

==References==

[[Category:Advocacy and fundraising initiatives]]
<references />

Mike's EU Marathons

2021-09-01T17:04:54Z

Hannosch:/* Online presence */ Added links

[[File:Mike's EU Marathons.png|right|Source: mikeseumarathons.eu]]
[[Mike Harley]] has committed to running a marathon in each of the 28 EU countries, in order to raise money for [[Invest in ME]] and biomedical research. In addition to obtaining sponsors for his marathon runs, he carries a donation can for people on the sidelines to contribute.

Mike's main motivation is to help a good friend, Ian, who has [[ME]]. During a different charity fundraiser in 2014, he had the opportunity to meet other ME patients and their families, which had such a profound effect on Mike that he launched into this more ambitious fundraiser.

Mike states: "I'm not a natural runner by any stretch, being an adopted Bristolian I love a drop of cider and it's fair to say I've had a relatively sedentary lifestyle having completed just 3 half marathons in the last 14 years (I did my first as a fresh faced 18 year old in London in 2001! UK is done, hurrah!) But I am extremely stubborn and whilst this is a hugely physically tough, time consuming and expensive challenge, it's one I'm completely committed to and for a cause to which I feel very connected to."<ref>http://www.mikeseumarathons.eu/the-challenge.html</ref>

For more info on his project as well as his progress, please see [http://www.mikeseumarathons.eu/the-challenge.html Mike's EU Marathons].<ref>http://www.mikeseumarathons.eu/</ref>

==Online presence==
*[http://www.mikeseumarathons.eu/ Website]
*[https://www.facebook.com/mikeseumarathons/?fref=pb Facebook]
*[https://twitter.com/MikesEUmaras?lang=en Twitter]
*[https://www.justgiving.com/fundraising/mikeseumarathons Donation page]

==References==

[[Category:Advocacy and fundraising initiatives]]
<references />

Germany

2021-06-12T10:31:05Z

Hannosch:/* Clinics */

[[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=www.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>

==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]]

==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=|last2=|first2=|authorlink2=|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])

==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)

== 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]

==See also==

* [[EUROMENE]]

==References==
{{Reflist}}

[[Category:Countries]]
[[Category:Europe]]
[[Category:Germany]]

Uta Behrends

2021-06-12T10:13:31Z

Hannosch:

Uta Behrends

2021-06-12T09:39:51Z

Hannosch:

Uta Behrends

2021-06-12T09:36:23Z

Hannosch:/* Online presence */

{{DISPLAYTITLE:Uta Behrends}}
{{NeedsImage}}
Prof. Dr. Uta Behrends is a professor for pediatric infectiology and immunobiology at the Kinderklinik Schwabing / Technical University Munich, Germany.<ref>{{Cite web|url=http://www.professoren.tum.de/behrends-uta/|title=Professorenprofile: Behrends_Uta|website=www.professoren.tum.de|access-date=2019-07-22}}</ref> Prof. Behrends diagnoses and treats patients aged 0-25 years who are suffering from postinfectious [[ME/CFS]]. Her research focuses on the role of [[Epstein-Barr virus]] ([[EBV]]). She is chairperson of the first parents' initiative in Germany: "[[Elterninitiative ME/CFS-kranke Kinder und Jugendliche München|Elterninitiative ME/CFS-kranke Kinder und Jugendliche München e.V.]]".<ref>{{Cite web|url=https://www.mecfs-kinder-muc.de/ueber-uns/|title=Über uns|website=Elterninitiative ME/CFS-kranke Kinder und Jugendliche München|language=de-DE|access-date=2020-08-12}}</ref>

[[Category:Researchers]]
[[Category:Germany researchers]]
[[Category:Clinicians]]
[[Category:German clinicians]]

== Notable studies ==
* 2017, "Serological profiling of the [[EBV]] immune response in [[Chronic Fatigue Syndrome]] using a peptide microarray" [http://journals.plos.org/plosone/article/authors?id=10.1371/journal.pone.0179124 (Full Text)]

== Articles ==
* 2019, [https://www.dsai.de/fileadmin/user_upload/Newsletter/dsai_02495_Newsletter_print_24_2019-11-21-PRINT.pdf "Das Chronische Fatigue Syndrom (CFS) bei Kindern und Jugendlichen"]
* 2019, [https://cfc.charite.de/fileadmin/user_upload/microsites/kompetenzzentren/cfc/Landing_Page/CFS_Heft_9.pdf "Chronisches Fatigue Syndrom/CFS – Praktische Empfehlungen zur Diagnostik und Therapie"]

== Talks and interviews ==
* June 2019, [https://vimeo.com/showcase/6585192/video/373564692 "Munich Register for Children, Adolescents, and Young Adults with Postinfectious CFS"] at the ME/CFS-Forum in Hamburg<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Videos ==
* May 2019, 3sat: [https://www.3sat.de/wissen/nano/chronische-erschoepfung-100.html "Kampf gegen die chronische Erschöpfung"]

== Online presence ==
* [http://www.professoren.tum.de/behrends-uta/ Prof. Behrends at Technical University Munich]
* [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/spezialgebiete-kinder-klinik/chronische-fatigue/ MRI Chronisches Fatigue Centrum (MCFC)]
* [https://www.mecfs-kinder-muc.de/ Elterninitiative ME/CFS-kranke Kinder und Jugendliche München e.V.]

== See also ==
* [[Charité Berlin]]
* [[Deutsche Gesellschaft für ME/CFS]]
* [[MillionsMissing Deutschland]]

== References ==
{{Reflist}}

Uta Behrends

2021-06-12T09:34:12Z

Hannosch:

{{DISPLAYTITLE:Uta Behrends}}
{{NeedsImage}}
Prof. Dr. Uta Behrends is a professor for pediatric infectiology and immunobiology at the Kinderklinik Schwabing / Technical University Munich, Germany.<ref>{{Cite web|url=http://www.professoren.tum.de/behrends-uta/|title=Professorenprofile: Behrends_Uta|website=www.professoren.tum.de|access-date=2019-07-22}}</ref> Prof. Behrends diagnoses and treats patients aged 0-25 years who are suffering from postinfectious [[ME/CFS]]. Her research focuses on the role of [[Epstein-Barr virus]] ([[EBV]]). She is chairperson of the first parents' initiative in Germany: "[[Elterninitiative ME/CFS-kranke Kinder und Jugendliche München|Elterninitiative ME/CFS-kranke Kinder und Jugendliche München e.V.]]".<ref>{{Cite web|url=https://www.mecfs-kinder-muc.de/ueber-uns/|title=Über uns|website=Elterninitiative ME/CFS-kranke Kinder und Jugendliche München|language=de-DE|access-date=2020-08-12}}</ref>

[[Category:Researchers]]
[[Category:Germany researchers]]
[[Category:Clinicians]]
[[Category:German clinicians]]

== Notable studies ==
* 2017, "Serological profiling of the [[EBV]] immune response in [[Chronic Fatigue Syndrome]] using a peptide microarray" [http://journals.plos.org/plosone/article/authors?id=10.1371/journal.pone.0179124 (Full Text)]

== Articles ==
* 2019, [https://www.dsai.de/fileadmin/user_upload/Newsletter/dsai_02495_Newsletter_print_24_2019-11-21-PRINT.pdf "Das Chronische Fatigue Syndrom (CFS) bei Kindern und Jugendlichen"]
* 2019, [https://cfc.charite.de/fileadmin/user_upload/microsites/kompetenzzentren/cfc/Landing_Page/CFS_Heft_9.pdf "Chronisches Fatigue Syndrom/CFS – Praktische Empfehlungen zur Diagnostik und Therapie"]

== Talks and interviews ==
* June 2019, [https://vimeo.com/showcase/6585192/video/373564692 "Munich Register for Children, Adolescents, and Young Adults with Postinfectious CFS"] at the ME/CFS-Forum in Hamburg<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Videos ==
* May 2019, 3sat: [https://www.3sat.de/wissen/nano/chronische-erschoepfung-100.html "Kampf gegen die chronische Erschöpfung"]

== Online presence ==
* [http://www.professoren.tum.de/behrends-uta/ Prof. Behrends at Technical University Munich]
* [https://www.mecfs-kinder-muc.de/ Elterninitiative ME/CFS-kranke Kinder und Jugendliche München e.V.]

== See also ==
* [[Charité Berlin]]
* [[Deutsche Gesellschaft für ME/CFS]]
* [[MillionsMissing Deutschland]]

== References ==
{{Reflist}}

Elterninitiative ME/CFS-kranke Kinder und Jugendliche München

2021-06-12T09:33:21Z

Hannosch:/* Aims */

==Aims==
The Elterninitiative ME/CFS-kranke Kinder und Jugendliche München e.V. (parents' initiative for children and adolescents with ME/CFS) is a non-profit organization. It was founded in 2019 and is located in Munich.

==Services==

==Notable people==
* [[Uta Behrends]]

===Patrons===
===Medical advisors===

==Research/Notable studies==

==History==

==Funding==

==Interviews and articles==

==Online presence==
*[https://www.mecfs-kinder-muc.de/ Website]

==See also==

==Learn more==


==References==
{{reflist}}


[[Category:Patient groups]]
[[Category:NATIONALITY patient groups]]
[[Category:German patient groups]]

Elterninitiative ME/CFS-kranke Kinder und Jugendliche München

2021-06-12T09:30:18Z

Hannosch:/* Aims */

==Aims==

==Services==

==Notable people==
===Patrons===
===Medical advisors===

==Research/Notable studies==

==History==

==Funding==

==Interviews and articles==

==Online presence==
*[https://www.mecfs-kinder-muc.de/ Website]

==See also==

==Learn more==


==References==
{{reflist}}


[[Category:Patient groups]]
[[Category:NATIONALITY patient groups]]
[[Category:German patient groups]]

Elterninitiative ME/CFS-kranke Kinder und Jugendliche München

2021-06-12T09:27:21Z

Hannosch:/* Online presence */

==Aims==

==Services==

==Notable people==
===Patrons===
===Medical advisors===

==Research/Notable studies==

==History==

==Funding==

==Interviews and articles==

==Online presence==
*[https://www.mecfs-kinder-muc.de/ Website]

==See also==

==Learn more==


==References==
{{reflist}}


[[Category:Patient groups]]
[[Category:NATIONALITY patient groups]]
[[Category:German patient groups]]

Elterninitiative ME/CFS-kranke Kinder und Jugendliche München

2021-06-12T09:27:05Z

Hannosch:/* Online presence */

==Aims==

==Services==

==Notable people==
===Patrons===
===Medical advisors===

==Research/Notable studies==

==History==

==Funding==

==Interviews and articles==

==Online presence==
*[https://www.mecfs-kinder-muc.de/ Website]
*Twitter
*Facebook (group/page)
*YouTube channel
*Instagram
*LinkedIn

==See also==

==Learn more==


==References==
{{reflist}}


[[Category:Patient groups]]
[[Category:NATIONALITY patient groups]]
[[Category:German patient groups]]

Elterninitiative ME/CFS-kranke Kinder und Jugendliche München

2021-06-12T09:25:14Z

Hannosch:New page

==Aims==

==Services==

==Notable people==
===Patrons===
===Medical advisors===

==Research/Notable studies==

==History==

==Funding==

==Interviews and articles==

==Online presence==
*Website
*Twitter
*Facebook (group/page)
*YouTube channel
*Instagram
*LinkedIn

==See also==

==Learn more==


==References==
{{reflist}}


[[Category:Patient groups]]
[[Category:NATIONALITY patient groups]]

Deutsche Gesellschaft für ME/CFS

2021-03-07T11:16:01Z

Hannosch:/* Events */

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the team of Prof. [[Carmen Scheibenbogen]] at the university hospital [[Charité Berlin|Charité]] in Berlin, the team of Prof. [[Uta Behrends]] at the [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München] in Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]].

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

The German Association organized its first ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> Together with Charité Berlin and TU Munich, the German Association organized the first online continuing education course on ME/CFS for physicians in 2021.<ref>{{Cite web|url=https://www.mecfs.de/online-fortbildung-zu-me-cfs-fuer-medizinisches-fachpersonal/|title=Online-Fortbildung zu ME/CFS für medizinisches Fachpersonal|date=2021-02-20|website=Deutsche Gesellschaft für ME/CFS|language=de-DE|access-date=2021-03-07}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

Together with [[MillionsMissing Deutschland|MillionsMissing Germany]] and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|url=https://www.mecfs.de/parlament-fachgespraech/|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|date=2020-03-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2020-07-07}}</ref> A first roundtable with patient organizations and the Ministry of Health and Research was held in December 2020.<ref>{{Cite web|url=https://www.facebook.com/login/?next=https%3A%2F%2Fwww.facebook.com%2Fdg.mecfs%2Fposts%2F947726572302075|title=Log into Facebook|website=Facebook|language=en|access-date=2021-03-07}}</ref>

==Interviews and media reports==
* May 2019, ARD: [https://www.youtube.com/watch?v=6Jm9UF5sU9Q "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg]
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

Germany

2021-03-07T11:03:21Z

Hannosch:/* Demographics */

[[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===

* [[Charité Berlin]]
* TU Munich
*
===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=www.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>

==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]]
* [[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]]

==Notable advocates==

==Clinicians==

* [http://dr-bieger.de/ Wilfried Bieger], Munich – Doesn't take on new patients
* [http://www.umweltmedizin-heidelberg.de/ Wolfgang Huber], Heidelberg – "Environmental medicine"
* [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/ Kinderklinik Schwabing der Technischen Universität München], München – The focus is on EBV-triggered ME/CFS. Appointments are given to children and adolescents with ME/CFS from Bavaria.
* [http://www.spezialklinik-neukirchen.de/ Spezialklinik Neukirchen], Neukirchen – Clinic for "environmental illness"
* [http://www.medizin3.uk-erlangen.de/patienten/sprechstunde/?tx_app_consultationlist%5Bconsultation%5D=790&tx_app_consultationlist%5BreturntopageId%5D=2505&tx_app_consultationlist%5Baction%5D=show&tx_app_consultationlist%5Bcontroller%5D=Consultation&cHash=7ad7eacba69a5505f89c288355b18841 Uniklinikum Erlangen], Erlangen – Outpatient clinic

== 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=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|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])

==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)

== 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]
* [https://www.symptome.ch/vbboard/cfids-cfs-me/?daysprune=-1 Symptome.ch]

==See also==

* [[EUROMENE]]

==References==
<references />
[[Category:Countries]]
[[Category:Europe]]
[[Category:Germany]]

Germany

2021-03-07T11:02:10Z

Hannosch:/* Research initiatives */

[[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> This represents a prevalence of 0.3% of the German population.

==Research==
===Research initiatives===

* [[Charité Berlin]]
* TU Munich
*
===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=www.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>

==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]]
* [[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]]

==Notable advocates==

==Clinicians==

* [http://dr-bieger.de/ Wilfried Bieger], Munich – Doesn't take on new patients
* [http://www.umweltmedizin-heidelberg.de/ Wolfgang Huber], Heidelberg – "Environmental medicine"
* [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/ Kinderklinik Schwabing der Technischen Universität München], München – The focus is on EBV-triggered ME/CFS. Appointments are given to children and adolescents with ME/CFS from Bavaria.
* [http://www.spezialklinik-neukirchen.de/ Spezialklinik Neukirchen], Neukirchen – Clinic for "environmental illness"
* [http://www.medizin3.uk-erlangen.de/patienten/sprechstunde/?tx_app_consultationlist%5Bconsultation%5D=790&tx_app_consultationlist%5BreturntopageId%5D=2505&tx_app_consultationlist%5Baction%5D=show&tx_app_consultationlist%5Bcontroller%5D=Consultation&cHash=7ad7eacba69a5505f89c288355b18841 Uniklinikum Erlangen], Erlangen – Outpatient clinic

== 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=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|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])

==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)

== 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]
* [https://www.symptome.ch/vbboard/cfids-cfs-me/?daysprune=-1 Symptome.ch]

==See also==

* [[EUROMENE]]

==References==
<references />
[[Category:Countries]]
[[Category:Europe]]
[[Category:Germany]]

Germany

2021-03-07T11:00:41Z

Hannosch:/* Blogs */

[[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> This represents a prevalence of 0.3% of the German population.

==Research==
===Research initiatives===

* [[Charité Berlin]]
*
===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=www.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>

==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]]
* [[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]]

==Notable advocates==

==Clinicians==

* [http://dr-bieger.de/ Wilfried Bieger], Munich – Doesn't take on new patients
* [http://www.umweltmedizin-heidelberg.de/ Wolfgang Huber], Heidelberg – "Environmental medicine"
* [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/ Kinderklinik Schwabing der Technischen Universität München], München – The focus is on EBV-triggered ME/CFS. Appointments are given to children and adolescents with ME/CFS from Bavaria.
* [http://www.spezialklinik-neukirchen.de/ Spezialklinik Neukirchen], Neukirchen – Clinic for "environmental illness"
* [http://www.medizin3.uk-erlangen.de/patienten/sprechstunde/?tx_app_consultationlist%5Bconsultation%5D=790&tx_app_consultationlist%5BreturntopageId%5D=2505&tx_app_consultationlist%5Baction%5D=show&tx_app_consultationlist%5Bcontroller%5D=Consultation&cHash=7ad7eacba69a5505f89c288355b18841 Uniklinikum Erlangen], Erlangen – Outpatient clinic

== 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=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|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])

==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)

== 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]
* [https://www.symptome.ch/vbboard/cfids-cfs-me/?daysprune=-1 Symptome.ch]

==See also==

* [[EUROMENE]]

==References==
<references />
[[Category:Countries]]
[[Category:Europe]]
[[Category:Germany]]

Germany

2020-10-15T09:14:04Z

Hannosch:/* Medical guidelines */

[[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> This represents a prevalence of 0.3% of the German population.

==Research==
===Research initiatives===

* [[Charité Berlin]]

===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=www.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>

==Social security and disability benefits==

==Access to care==

How many hospitals & doctors, which diagnose and treat ME (estimate):
Rehabilitation offers for ME sufferers:

==Patient groups==
===National groups===

* [[Deutsche Gesellschaft für ME/CFS]]
* [[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]]

==Notable advocates==

==Clinicians==

* [http://dr-bieger.de/ Wilfried Bieger], Munich
* [http://www.umweltmedizin-heidelberg.de/ Wolfgang Huber], Heidelberg
* [https://www.drgrothusen.de/ Andreas Grothusen], Hamburg

==Clinics==

* [https://cfc.charite.de/ Charité Fatigue Centrum], Berlin
* [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München], München
* [http://www.spezialklinik-neukirchen.de/ Spezialklinik Neukirchen], Neukirchen
* [http://www.medizin3.uk-erlangen.de/patienten/sprechstunde/?tx_app_consultationlist%5Bconsultation%5D=790&tx_app_consultationlist%5BreturntopageId%5D=2505&tx_app_consultationlist%5Baction%5D=show&tx_app_consultationlist%5Bcontroller%5D=Consultation&cHash=7ad7eacba69a5505f89c288355b18841 Uniklinikum Erlangen], Erlangen

== 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=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|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])

==Blogs ==

* [https://www.cfs-ladestation.de CFS-Ladestation] (archive)
* [https://www.youtube.com/channel/UCVcwQQYAdzVtkO5_RXYVKqQ Gwendolin] (vlog)
* [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)

== 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]
* [https://www.symptome.ch/vbboard/cfids-cfs-me/?daysprune=-1 Symptome.ch]

==See also==

* [[EUROMENE]]

==References==
<references />
[[Category:Countries]]
[[Category:Europe]]
[[Category:Germany]]

Germany

2020-10-15T07:15:57Z

Hannosch:/* Blogs */

[[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> This represents a prevalence of 0.3% of the German population.

==Research==
===Research initiatives===

* [[Charité Berlin]]

===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=www.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>

==Social security and disability benefits==

==Access to care==

How many hospitals & doctors, which diagnose and treat ME (estimate):
Rehabilitation offers for ME sufferers:

==Patient groups==
===National groups===

* [[Deutsche Gesellschaft für ME/CFS]]
* [[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]]

==Notable advocates==

==Clinicians==

* [http://dr-bieger.de/ Wilfried Bieger], Munich
* [http://www.umweltmedizin-heidelberg.de/ Wolfgang Huber], Heidelberg
* [https://www.drgrothusen.de/ Andreas Grothusen], Hamburg

==Clinics==

* [https://cfc.charite.de/ Charité Fatigue Centrum], Berlin
* [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München], München
* [http://www.spezialklinik-neukirchen.de/ Spezialklinik Neukirchen], Neukirchen
* [http://www.medizin3.uk-erlangen.de/patienten/sprechstunde/?tx_app_consultationlist%5Bconsultation%5D=790&tx_app_consultationlist%5BreturntopageId%5D=2505&tx_app_consultationlist%5Baction%5D=show&tx_app_consultationlist%5Bcontroller%5D=Consultation&cHash=7ad7eacba69a5505f89c288355b18841 Uniklinikum Erlangen], Erlangen

== 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=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|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])

==Blogs ==

* [https://www.cfs-ladestation.de CFS-Ladestation] (archive)
* [https://www.youtube.com/channel/UCVcwQQYAdzVtkO5_RXYVKqQ Gwendolin] (vlog)
* [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)

== 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]
* [https://www.symptome.ch/vbboard/cfids-cfs-me/?daysprune=-1 Symptome.ch]

==See also==

* [[EUROMENE]]

==References==
<references />
[[Category:Countries]]
[[Category:Europe]]
[[Category:Germany]]

Fatigatio e.V.

2020-08-30T12:48:56Z

Hannosch:/* Controversy */

The '''Fatigatio''' is a [[Germany|German]] patient organization. It was founded in 1993 and is located in Berlin.<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-15}}</ref>
== Aims ==

== Controversy ==
* When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline.<ref>{{Cite web|url=http://www.cfs-aktuell.de/september11_3.htm#Fatigatio_steigt_aus_der_Protestaktion_gegen_neue_DEGAM-Leitlinien_M%C3%BCdigkeit_aus_|title=September11_3|website=www.cfs-aktuell.de|access-date=2020-07-07}}</ref>
* During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman [https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf wrote to the guideline commission] (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, patients should be activated and made derogatory comments about the "CFS scene".<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> This statement was published in the official guideline report.<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and asked the guideline commission to delete it from the report.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/01_offizielle_entschuldigung_degam.pdf|title=Entschuldigung DEGAM|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> Afterwards Fatigatio published [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf a letter by a lawyer] on its website to threaten critics with legal action<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf|title=Persönlichkeitsrechtsverletzung/ Rechtliche Grundlagen|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> and [https://web.archive.org/web/20180322151559/https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf a letter by a psychiatrist] to defend the remark, that bedridden people with ME should be activated.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf|title=Stellungnahme Prof. Stark|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
* While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German [[Millions Missing protests|#MillionsMissing]] protests 2018<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-08-15}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref>.
* Fatigatio uses the term "Chronisches Erschöpfungssyndrom" (chronic exhaustion syndrome) in its name "Bundesverband Chronisches Erschöpfungssyndrom CFS/CFIDS/ME" (federal alliance chronic exhaustion syndrome).<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-09-01}}</ref> Patients critizise the use of the trivialising and unofficial term "exhaustion syndrome". Also that the Fatigatio uses the terms [[Chronic fatigue syndrome|CFS]] and [[CFS/ME]] instead of [[Myalgic encephalomyelitis|ME]] or [[ME/CFS]] is criticized.
* Media articles with the Fatigatio mostly focus on tiredness, psychological problems, thinking positive and staying active.<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref><ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref> In an article, the then chairwoman proposed as solution to sometimes skip ironing clothes.<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-09-01|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* Fatigatio promoted unscientific theories and programs like [[Gupta programme|Gupta]] (it was forbidden to critizise Gupta in the member forum [the forum doesn't exist anymore]).

== Events ==
Fatigatio organizes a yearly conference.<ref>{{Cite web|url=https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/|title=CFS / ME - Fachtagung 2019 des Fatigatio e.V. - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-31}}</ref>

== Interviews and articles ==
* "Mit chronischer Erschöpfung leben"<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-08-31|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* "Wenn Schlaf keine Erholung bringt"<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref>
* "Chronisches Erschöpfungssyndrom: Wenn man immer müde ist"<ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref>

== Online presence ==
* [https://www.fatigatio.de/ Website]
* [https://www.facebook.com/fatigatio/?ref=br_rs Facebook]
* [https://twitter.com/FatigatioeV Twitter]
* [https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg YouTube]

== See also ==

* [[Deutsche Gesellschaft für ME/CFS]]
* [[Lost Voices Stiftung]]
* [[MillionsMissing Deutschland|#MillionsMissing Deutschland]]

== References ==
{{reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Fatigatio e.V.

2020-08-18T13:49:53Z

Hannosch:/* Controversy */ New link

The '''Fatigatio''' is a [[Germany|German]] patient organization. It was founded in 1993 and is located in Berlin.<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-15}}</ref>
== Aims ==

== Controversy ==
* When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline.<ref>{{Cite web|url=http://www.cfs-aktuell.de/september11_3.htm#Fatigatio_steigt_aus_der_Protestaktion_gegen_neue_DEGAM-Leitlinien_M%C3%BCdigkeit_aus_|title=September11_3|website=www.cfs-aktuell.de|access-date=2020-07-07}}</ref>
* During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman [https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf wrote to the guideline commission] (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, patients should be activated and made derogatory comments about the "CFS scene".<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> This statement was published in the official guideline report.<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and asked the guideline commission to delete it from the report.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/01_offizielle_entschuldigung_degam.pdf|title=Entschuldigung DEGAM|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> Afterwards Fatigatio published [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf a letter by a lawyer] on its website to threaten critics with legal action<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf|title=Persönlichkeitsrechtsverletzung/ Rechtliche Grundlagen|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> and [https://web.archive.org/web/20180322151559/https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf a letter by a psychiatrist] to defend the remark, that bedridden people with ME should be activated.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf|title=Stellungnahme Prof. Stark|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
* While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German [[Millions Missing protests|#MillionsMissing]] protests 2018<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-08-15}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref>.
* Fatigatio uses the term "Chronisches Erschöpfungssyndrom" (chronic exhaustion syndrome) in its name "Bundesverband Chronisches Erschöpfungssyndrom CFS/CFIDS/ME" (federal alliance chronic exhaustion syndrome).<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-09-01}}</ref> Patients critizise the use of the trivialising and unofficial term "exhaustion syndrome". Also that the Fatigatio uses the terms [[Chronic fatigue syndrome|CFS]] and [[CFS/ME]] instead of [[Myalgic encephalomyelitis|ME]] or [[ME/CFS]] is criticized.
* Media articles with the Fatigatio mostly focus on tiredness, psychological problems, thinking positive and staying active.<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref><ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref> In an article, the then chairwoman proposed as solution to sometimes skip ironing clothes.<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-09-01|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* Fatigatio promoted unscientific theories and invited proponents of the [[biopsychosocial model]] to speak at its conferences (e.g. about childhood trauma) or write for the member magazine. Fatigatio also promoted pseudoscientific programs like [[Gupta programme|Gupta]] (it was forbidden to critizise Gupta in the member forum [the forum doesn't exist anymore]).

== Events ==
Fatigatio organizes a yearly conference.<ref>{{Cite web|url=https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/|title=CFS / ME - Fachtagung 2019 des Fatigatio e.V. - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-31}}</ref>

== Interviews and articles ==
* "Mit chronischer Erschöpfung leben"<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-08-31|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* "Wenn Schlaf keine Erholung bringt"<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref>
* "Chronisches Erschöpfungssyndrom: Wenn man immer müde ist"<ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref>

== Online presence ==
* [https://www.fatigatio.de/ Website]
* [https://www.facebook.com/fatigatio/?ref=br_rs Facebook]
* [https://twitter.com/FatigatioeV Twitter]
* [https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg YouTube]

== See also ==

* [[Deutsche Gesellschaft für ME/CFS]]
* [[Lost Voices Stiftung]]
* [[MillionsMissing Deutschland|#MillionsMissing Deutschland]]

== References ==
{{reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Uta Behrends

2020-08-12T15:50:51Z

Hannosch:Added her involvement in new parents initiative

{{DISPLAYTITLE:Uta Behrends}}
{{NeedsImage}}
Prof. Dr. Uta Behrends is a professor for pediatric infectiology and immunobiology at the Kinderklinik Schwabing / Technical University Munich, Germany.<ref>{{Cite web|url=http://www.professoren.tum.de/behrends-uta/|title=Professorenprofile: Behrends_Uta|website=www.professoren.tum.de|access-date=2019-07-22}}</ref> Prof. Behrends diagnoses and treats patients aged 0-25 years who are suffering from postinfectious [[ME/CFS]]. Her research focuses on the role of [[Epstein-Barr virus]] ([[EBV]]). She is chairperson of the first parents' initiative in Germany: "Elterninitiative ME/CFS-kranke Kinder und Jugendliche München e.V.".<ref>{{Cite web|url=https://www.mecfs-kinder-muc.de/ueber-uns/|title=Über uns|website=Elterninitiative ME/CFS-kranke Kinder und Jugendliche München|language=de-DE|access-date=2020-08-12}}</ref>

[[Category:Researchers]]
[[Category:Germany researchers]]
[[Category:Clinicians]]
[[Category:German clinicians]]

== Notable studies ==
* 2017, "Serological profiling of the [[EBV]] immune response in [[Chronic Fatigue Syndrome]] using a peptide microarray" [http://journals.plos.org/plosone/article/authors?id=10.1371/journal.pone.0179124 (Full Text)]

== Articles ==
* 2019, [https://www.dsai.de/fileadmin/user_upload/Newsletter/dsai_02495_Newsletter_print_24_2019-11-21-PRINT.pdf "Das Chronische Fatigue Syndrom (CFS) bei Kindern und Jugendlichen"]
* 2019, [https://cfc.charite.de/fileadmin/user_upload/microsites/kompetenzzentren/cfc/Landing_Page/CFS_Heft_9.pdf "Chronisches Fatigue Syndrom/CFS – Praktische Empfehlungen zur Diagnostik und Therapie"]

== Talks and interviews ==
* June 2019, [https://vimeo.com/showcase/6585192/video/373564692 "Munich Register for Children, Adolescents, and Young Adults with Postinfectious CFS"] at the ME/CFS-Forum in Hamburg<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Videos ==
* May 2019, 3sat: [https://www.3sat.de/wissen/nano/chronische-erschoepfung-100.html "Kampf gegen die chronische Erschöpfung"]

== Online presence ==
* [http://www.professoren.tum.de/behrends-uta/ Prof. Behrends at Technical University Munich]
* [https://www.mecfs-kinder-muc.de/ Elterninitiative ME/CFS-kranke Kinder und Jugendliche München e.V.]

== See also ==
* [[Charité Berlin]]
* [[Deutsche Gesellschaft für ME/CFS]]
* [[MillionsMissing Deutschland]]

== References ==
<references />

Deutsche Gesellschaft für ME/CFS

2020-08-12T15:37:35Z

Hannosch:/* Interviews and articles */ New Link

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the team of Prof. [[Carmen Scheibenbogen]] at the university hospital [[Charité Berlin|Charité]] in Berlin, the team of Prof. [[Uta Behrends]] at the [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München] in Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]].

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

The German Association organized its first ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

Together with [[MillionsMissing Deutschland|MillionsMissing Germany]] and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|url=https://www.mecfs.de/parlament-fachgespraech/|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|date=2020-03-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2020-07-07}}</ref>

==Interviews and articles==
* May 2019, ARD: [https://www.youtube.com/watch?v=6Jm9UF5sU9Q "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg]
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2020-07-16T19:39:03Z

Hannosch:/* Notable projects */

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the team of Prof. [[Carmen Scheibenbogen]] at the university hospital [[Charité Berlin|Charité]] in Berlin, the team of Prof. [[Uta Behrends]] at the [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München] in Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]].

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

The German Association organized its first ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

Together with [[MillionsMissing Deutschland|MillionsMissing Germany]] and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|url=https://www.mecfs.de/parlament-fachgespraech/|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|date=2020-03-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2020-07-07}}</ref>

==Interviews and articles==
* May 2019, ARD: [https://www.daserste.de/information/politik-weltgeschehen/mittagsmagazin/videos/mit-19-jahren-pflegefall-video-100.html "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg]
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

Uta Behrends

2020-07-16T19:33:58Z

Hannosch:/* Talks and interviews */ Added articles and links

{{DISPLAYTITLE:Uta Behrends}}
{{NeedsImage}}
Prof. Dr. Uta Behrends is a professor for pediatric infectiology and immunobiology at the Kinderklinik Schwabing / Technical University Munich, Germany.<ref>{{Cite web|url=http://www.professoren.tum.de/behrends-uta/|title=Professorenprofile: Behrends_Uta|website=www.professoren.tum.de|access-date=2019-07-22}}</ref> Prof. Behrends diagnoses and treats patients aged 0-25 years who are suffering from postinfectious [[ME/CFS]]. Her research focuses on the role of [[Epstein-Barr virus]] ([[EBV]]).

[[Category:Researchers]]
[[Category:Germany researchers]]
[[Category:Clinicians]]
[[Category:German clinicians]]

== Notable studies ==
* 2017, "Serological profiling of the [[EBV]] immune response in [[Chronic Fatigue Syndrome]] using a peptide microarray" [http://journals.plos.org/plosone/article/authors?id=10.1371/journal.pone.0179124 (Full Text)]

== Articles ==
* 2019, [https://www.dsai.de/fileadmin/user_upload/Newsletter/dsai_02495_Newsletter_print_24_2019-11-21-PRINT.pdf "Das Chronische Fatigue Syndrom (CFS) bei Kindern und Jugendlichen"]
* 2019, [https://cfc.charite.de/fileadmin/user_upload/microsites/kompetenzzentren/cfc/Landing_Page/CFS_Heft_9.pdf "Chronisches Fatigue Syndrom/CFS – Praktische Empfehlungen zur Diagnostik und Therapie"]

== Talks and interviews ==
* June 2019, [https://vimeo.com/showcase/6585192/video/373564692 "Munich Register for Children, Adolescents, and Young Adults with Postinfectious CFS"] at the ME/CFS-Forum in Hamburg<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Videos ==
* May 2019, 3sat: [https://www.3sat.de/wissen/nano/chronische-erschoepfung-100.html "Kampf gegen die chronische Erschöpfung"]

== Online presence ==
* [http://www.professoren.tum.de/behrends-uta/ Website]

== See also ==
* [[Charité Berlin]]
* [[Deutsche Gesellschaft für ME/CFS]]
* [[MillionsMissing Deutschland]]

== References ==
<references />

Fatigatio e.V.

2020-07-07T14:13:42Z

Hannosch:/* Controversy */

The '''Fatigatio''' is a [[Germany|German]] patient organization. It was founded in 1993 and is located in Berlin.<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-15}}</ref>
== Aims ==

== Controversy ==
* When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline.<ref>{{Cite web|url=http://www.cfs-aktuell.de/september11_3.htm#Fatigatio_steigt_aus_der_Protestaktion_gegen_neue_DEGAM-Leitlinien_M%C3%BCdigkeit_aus_|title=September11_3|website=www.cfs-aktuell.de|access-date=2020-07-07}}</ref>
* During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman [https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf wrote to the guideline commission] (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, patients should be activated and made derogatory comments about the "CFS scene".<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> This statement was published in the official guideline report.<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and asked the guideline commission to delete it from the report.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/01_offizielle_entschuldigung_degam.pdf|title=Entschuldigung DEGAM|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> Afterwards Fatigatio published [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf a letter by a lawyer] on its website to threaten critics with legal action<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf|title=Persönlichkeitsrechtsverletzung/ Rechtliche Grundlagen|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> and [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf a letter by a psychiatrist] to defend the remark, that bedridden people with ME should be activated.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf|title=Stellungnahme Prof. Stark|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
* While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German [[Millions Missing protests|#MillionsMissing]] protests 2018<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-08-15}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref>.
* Fatigatio uses the term "Chronisches Erschöpfungssyndrom" (chronic exhaustion syndrome) in its name "Bundesverband Chronisches Erschöpfungssyndrom CFS/CFIDS/ME" (federal alliance chronic exhaustion syndrome).<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-09-01}}</ref> Patients critizise the use of the trivialising and unofficial term "exhaustion syndrome". Also that the Fatigatio uses the terms [[Chronic fatigue syndrome|CFS]] and [[CFS/ME]] instead of [[Myalgic encephalomyelitis|ME]] or [[ME/CFS]] is criticized.
* Media articles with the Fatigatio mostly focus on tiredness, psychological problems, thinking positive and staying active.<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref><ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref> In an article, the then chairwoman proposed as solution to sometimes skip ironing clothes.<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-09-01|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* Fatigatio promoted unscientific theories and invited proponents of the [[biopsychosocial model]] to speak at its conferences (e.g. about childhood trauma) or write for the member magazine. Fatigatio also promoted pseudoscientific programs like [[Gupta programme|Gupta]] (it was forbidden to critizise Gupta in the member forum [the forum doesn't exist anymore]).

== Events ==
Fatigatio organizes a yearly conference.<ref>{{Cite web|url=https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/|title=CFS / ME - Fachtagung 2019 des Fatigatio e.V. - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-31}}</ref>

== Interviews and articles ==
* "Mit chronischer Erschöpfung leben"<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-08-31|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* "Wenn Schlaf keine Erholung bringt"<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref>
* "Chronisches Erschöpfungssyndrom: Wenn man immer müde ist"<ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref>

== Online presence ==
* [https://www.fatigatio.de/ Website]
* [https://www.facebook.com/fatigatio/?ref=br_rs Facebook]
* [https://twitter.com/FatigatioeV Twitter]
* [https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg YouTube]

== See also ==

* [[Deutsche Gesellschaft für ME/CFS]]
* [[Lost Voices Stiftung]]
* [[MillionsMissing Deutschland|#MillionsMissing Deutschland]]

== References ==
{{reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Fatigatio e.V.

2020-07-07T14:11:13Z

Hannosch:/* Controversy */

The '''Fatigatio''' is a [[Germany|German]] patient organization. It was founded in 1993 and is located in Berlin.<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-15}}</ref>
== Aims ==

== Controversy ==
* When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline.<ref>{{Cite web|url=http://www.cfs-aktuell.de/september11_3.htm#Fatigatio_steigt_aus_der_Protestaktion_gegen_neue_DEGAM-Leitlinien_M%C3%BCdigkeit_aus_|title=September11_3|website=www.cfs-aktuell.de|access-date=2020-07-07}}</ref>
* During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman [https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf wrote to the guideline commission] (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, patients should be activated and made derogatory comments about the "CFS scene".<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> This statement was published in the official guideline report.<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and asked the guideline commission to delete it from the report.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/01_offizielle_entschuldigung_degam.pdf|title=Entschuldigung DEGAM|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> Afterwards Fatigatio published [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf a letter by a lawyer] on its website to threaten critics with legal action<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf|title=Persönlichkeitsrechtsverletzung/ Rechtliche Grundlagen|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> and [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf a letter by a psychiatrist] to defend the remark, that bedridden people with ME should be activated.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf|title=Stellungnahme Prof. Stark|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
* While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German [[Millions Missing protests|#MillionsMissing]] protests 2018<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-08-15}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref>.
* Fatigatio uses the term "Chronisches Erschöpfungssyndrom" (chronic exhaustion syndrome) in its name "Bundesverband Chronisches Erschöpfungssyndrom CFS/CFIDS/ME" (federal alliance chronic exhaustion syndrome).<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-09-01}}</ref> Patients critizise the use of the trivialising and unofficial term "exhaustion syndrome". Also that the Fatigatio uses the terms [[Chronic fatigue syndrome|CFS]] and [[CFS/ME]] instead of [[Myalgic encephalomyelitis|ME]] or [[ME/CFS]] is criticized.
* Media articles with the Fatigatio mostly focus on tiredness, psychological problems, thinking positive and staying active.<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref><ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref> In an article, the then chairwoman proposed as solution to sometimes skip ironing clothes.<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-09-01|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* Fatigatio promoted unscientific theories and invited proponents of the [[biopsychosocial model]] to speak at its conferences (e.g. about childhood trauma) or write for the member magazine. Fatigatio also promoted pseudoscientific programs like [[Gupta programme|Gupta]] (it was forbidden to critizise Gupta in the member forum).

== Events ==
Fatigatio organizes a yearly conference.<ref>{{Cite web|url=https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/|title=CFS / ME - Fachtagung 2019 des Fatigatio e.V. - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-31}}</ref>

== Interviews and articles ==
* "Mit chronischer Erschöpfung leben"<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-08-31|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* "Wenn Schlaf keine Erholung bringt"<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref>
* "Chronisches Erschöpfungssyndrom: Wenn man immer müde ist"<ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref>

== Online presence ==
* [https://www.fatigatio.de/ Website]
* [https://www.facebook.com/fatigatio/?ref=br_rs Facebook]
* [https://twitter.com/FatigatioeV Twitter]
* [https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg YouTube]

== See also ==

* [[Deutsche Gesellschaft für ME/CFS]]
* [[Lost Voices Stiftung]]
* [[MillionsMissing Deutschland|#MillionsMissing Deutschland]]

== References ==
{{reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Fatigatio e.V.

2020-07-07T13:29:14Z

Hannosch:/* Controversy */

The '''Fatigatio''' is a [[Germany|German]] patient organization. It was founded in 1993 and is located in Berlin.<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-15}}</ref>
== Aims ==

== Controversy ==
* When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline.<ref>{{Cite web|url=http://www.cfs-aktuell.de/september11_3.htm#Fatigatio_steigt_aus_der_Protestaktion_gegen_neue_DEGAM-Leitlinien_M%C3%BCdigkeit_aus_|title=September11_3|website=www.cfs-aktuell.de|access-date=2020-07-07}}</ref>
* During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman [https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf wrote to the guideline commission] (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, bedridden patients should be activated and made derogatory comments about the "CFS scene".<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> This statement was published in the official guideline report.<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and asked the guideline commission to delete it from the report.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/01_offizielle_entschuldigung_degam.pdf|title=Entschuldigung DEGAM|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> Afterwards Fatigatio published [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf a letter by a lawyer] on its website to threaten critics with legal action<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf|title=Persönlichkeitsrechtsverletzung/ Rechtliche Grundlagen|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> and [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf a letter by a psychiatrist] to defend the remark, that bedridden people with ME should be activated.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf|title=Stellungnahme Prof. Stark|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
* While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German [[Millions Missing protests|#MillionsMissing]] protests 2018<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-08-15}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref>.
* Fatigatio uses the term "Chronisches Erschöpfungssyndrom" (chronic exhaustion syndrome) in its name "Bundesverband Chronisches Erschöpfungssyndrom CFS/CFIDS/ME" (federal alliance chronic exhaustion syndrome).<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-09-01}}</ref> Patients critizise the use of the trivialising and unofficial term "exhaustion syndrome". Also that the Fatigatio uses the terms [[Chronic fatigue syndrome|CFS]] and [[CFS/ME]] instead of [[Myalgic encephalomyelitis|ME]] or [[ME/CFS]] is criticized.
* Media articles with the Fatigatio mostly focus on tiredness, psychological problems, thinking positive and staying active.<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref><ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref> In an article, the then chairwoman proposed as solution to sometimes skip ironing clothes.<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-09-01|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* Fatigatio promoted unscientific theories and invited proponents of the [[biopsychosocial model]] to speak at its conferences (e.g. about childhood trauma) or write for the member magazine. Fatigatio also promoted pseudoscientific programs like [[Gupta programme|Gupta]] (it was forbidden to critizise Gupta in the member forum).

== Events ==
Fatigatio organizes a yearly conference.<ref>{{Cite web|url=https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/|title=CFS / ME - Fachtagung 2019 des Fatigatio e.V. - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-31}}</ref>

== Interviews and articles ==
* "Mit chronischer Erschöpfung leben"<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-08-31|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* "Wenn Schlaf keine Erholung bringt"<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref>
* "Chronisches Erschöpfungssyndrom: Wenn man immer müde ist"<ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref>

== Online presence ==
* [https://www.fatigatio.de/ Website]
* [https://www.facebook.com/fatigatio/?ref=br_rs Facebook]
* [https://twitter.com/FatigatioeV Twitter]
* [https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg YouTube]

== See also ==

* [[Deutsche Gesellschaft für ME/CFS]]
* [[Lost Voices Stiftung]]
* [[MillionsMissing Deutschland|#MillionsMissing Deutschland]]

== References ==
{{reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Fatigatio e.V.

2020-07-07T12:54:33Z

Hannosch:/* Controversy */

The '''Fatigatio''' is a [[Germany|German]] patient organization. It was founded in 1993 and is located in Berlin.<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-15}}</ref>
== Aims ==

== Controversy ==
* When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline.<ref>{{Cite web|url=http://www.cfs-aktuell.de/september11_3.htm#Fatigatio_steigt_aus_der_Protestaktion_gegen_neue_DEGAM-Leitlinien_M%C3%BCdigkeit_aus_|title=September11_3|website=www.cfs-aktuell.de|access-date=2020-07-07}}</ref><ref>{{Cite web|url=https://web.archive.org/web/20180302155458/https://www.fatigatio.de/aktuelles/details/artikel/warum-der-fatigatio-ev-seine-eigene-stellungnahme-an-die-degam-sendet/|title=Warum der Fatigatio e.V. seine eigene Stellungnahme an... - Fatigatio e.V.|website=www.fatigatio.de|access-date=2019-08-15|date=|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman [https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf wrote to the guideline commission] (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, bedridden patients should be activated and made derogatory comments about the "CFS scene".<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> This statement was published in the official guideline report.<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and asked the guideline commission to delete it from the report.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/01_offizielle_entschuldigung_degam.pdf|title=Entschuldigung DEGAM|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> Afterwards Fatigatio published [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf a letter by a lawyer] on its website to threaten critics with legal action<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf|title=Persönlichkeitsrechtsverletzung/ Rechtliche Grundlagen|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> and [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf a letter by a psychiatrist] to defend the remark, that bedridden people with ME should be activated.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf|title=Stellungnahme Prof. Stark|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
* While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German [[Millions Missing protests|#MillionsMissing]] protests 2018<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-08-15}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref>.
* Fatigatio uses the term "Chronisches Erschöpfungssyndrom" (chronic exhaustion syndrome) in its name "Bundesverband Chronisches Erschöpfungssyndrom CFS/CFIDS/ME" (federal alliance chronic exhaustion syndrome).<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-09-01}}</ref> Patients critizise the use of the trivialising and unofficial term "exhaustion syndrome". Also that the Fatigatio uses the terms [[Chronic fatigue syndrome|CFS]] and [[CFS/ME]] instead of [[Myalgic encephalomyelitis|ME]] or [[ME/CFS]] is criticized.
* Media articles with the Fatigatio mostly focus on tiredness, psychological problems, thinking positive and staying active.<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref><ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref> In an article, the then chairwoman proposed as solution to sometimes skip ironing clothes.<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-09-01|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* Fatigatio promoted unscientific theories and invited proponents of the [[biopsychosocial model]] to speak at its conferences (e.g. about childhood trauma) or write for the member magazine. Fatigatio also promoted pseudoscientific programs like [[Gupta programme|Gupta]] (it was forbidden to critizise Gupta in the member forum).

== Events ==
Fatigatio organizes a yearly conference.<ref>{{Cite web|url=https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/|title=CFS / ME - Fachtagung 2019 des Fatigatio e.V. - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-31}}</ref>

== Interviews and articles ==
* "Mit chronischer Erschöpfung leben"<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-08-31|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* "Wenn Schlaf keine Erholung bringt"<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref>
* "Chronisches Erschöpfungssyndrom: Wenn man immer müde ist"<ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref>

== Online presence ==
* [https://www.fatigatio.de/ Website]
* [https://www.facebook.com/fatigatio/?ref=br_rs Facebook]
* [https://twitter.com/FatigatioeV Twitter]
* [https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg YouTube]

== See also ==

* [[Deutsche Gesellschaft für ME/CFS]]
* [[Lost Voices Stiftung]]
* [[MillionsMissing Deutschland|#MillionsMissing Deutschland]]

== References ==
{{reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Fatigatio e.V.

2020-07-07T12:38:15Z

Hannosch:/* References */

The '''Fatigatio''' is a [[Germany|German]] patient organization. It was founded in 1993 and is located in Berlin.<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-15}}</ref>
== Aims ==

== Controversy ==
* When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline.<ref>{{Cite web|url=https://web.archive.org/web/20180302155458/https://www.fatigatio.de/aktuelles/details/artikel/warum-der-fatigatio-ev-seine-eigene-stellungnahme-an-die-degam-sendet/|title=Warum der Fatigatio e.V. seine eigene Stellungnahme an... - Fatigatio e.V.|website=www.fatigatio.de|access-date=2019-08-15|date=|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman [https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf wrote to the guideline commission] (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, bedridden patients should be activated and made derogatory comments about the "CFS scene".<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> This statement was published in the official guideline report.<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and asked the guideline commission to delete it from the report.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/01_offizielle_entschuldigung_degam.pdf|title=Entschuldigung DEGAM|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> Afterwards Fatigatio published [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf a letter by a lawyer] on its website to threaten critics with legal action<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf|title=Persönlichkeitsrechtsverletzung/ Rechtliche Grundlagen|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> and [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf a letter by a psychiatrist] to defend the remark, that bedridden people with ME should be activated.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf|title=Stellungnahme Prof. Stark|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
* While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German [[Millions Missing protests|#MillionsMissing]] protests 2018<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-08-15}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref>.
* Fatigatio uses the term "Chronisches Erschöpfungssyndrom" (chronic exhaustion syndrome) in its name "Bundesverband Chronisches Erschöpfungssyndrom CFS/CFIDS/ME" (federal alliance chronic exhaustion syndrome).<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-09-01}}</ref> Patients critizise the use of the trivialising and unofficial term "exhaustion syndrome". Also that the Fatigatio uses the terms [[Chronic fatigue syndrome|CFS]] and [[CFS/ME]] instead of [[Myalgic encephalomyelitis|ME]] or [[ME/CFS]] is criticized.
* Media articles with the Fatigatio mostly focus on tiredness, psychological problems, thinking positive and staying active.<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref><ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref> In an article, the then chairwoman proposed as solution to sometimes skip ironing clothes.<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-09-01|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* Fatigatio promoted unscientific theories and invited proponents of the [[biopsychosocial model]] to speak at its conferences (e.g. about childhood trauma) or write for the member magazine. Fatigatio also promoted pseudoscientific programs like [[Gupta programme|Gupta]] (it was forbidden to critizise Gupta in the member forum).

== Events ==
Fatigatio organizes a yearly conference.<ref>{{Cite web|url=https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/|title=CFS / ME - Fachtagung 2019 des Fatigatio e.V. - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-31}}</ref>

== Interviews and articles ==
* "Mit chronischer Erschöpfung leben"<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=www.merkur.de|language=de|access-date=2019-08-31|last=|first=|authorlink=|last2=|first2=|authorlink2=|archive-url=|archive-date=|dead-url=}}</ref>
* "Wenn Schlaf keine Erholung bringt"<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref>
* "Chronisches Erschöpfungssyndrom: Wenn man immer müde ist"<ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref>

== Online presence ==
* [https://www.fatigatio.de/ Website]
* [https://www.facebook.com/fatigatio/?ref=br_rs Facebook]
* [https://twitter.com/FatigatioeV Twitter]
* [https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg YouTube]

== See also ==

* [[Deutsche Gesellschaft für ME/CFS]]
* [[Lost Voices Stiftung]]
* [[MillionsMissing Deutschland|#MillionsMissing Deutschland]]

== References ==
{{reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2020-07-07T08:04:07Z

Hannosch:/* Events */

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the team of Prof. [[Carmen Scheibenbogen]] at the university hospital [[Charité Berlin|Charité]] in Berlin, the team of Prof. [[Uta Behrends]] at the [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München] in Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]].

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

The German Association organized its first ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

Together with #MillionsMissing Germany and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|url=https://www.mecfs.de/parlament-fachgespraech/|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|date=2020-03-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2020-07-07}}</ref>

==Interviews and articles==
* May 2019, ARD: [https://www.daserste.de/information/politik-weltgeschehen/mittagsmagazin/videos/mit-19-jahren-pflegefall-video-100.html "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg]
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2020-07-07T08:02:49Z

Hannosch:/* Events */

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the team of Prof. [[Carmen Scheibenbogen]] at the university hospital [[Charité Berlin|Charité]] in Berlin, the team of Prof. [[Uta Behrends]] at the [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München] in Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]].

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

It organized an ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

Together with #MillionsMissing Germany and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|url=https://www.mecfs.de/parlament-fachgespraech/|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|date=2020-03-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2020-07-07}}</ref>

==Interviews and articles==
* May 2019, ARD: [https://www.daserste.de/information/politik-weltgeschehen/mittagsmagazin/videos/mit-19-jahren-pflegefall-video-100.html "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg]
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

Germany

2020-07-07T08:01:50Z

Hannosch:/* Medical guidelines */

[[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> This represents a prevalence of 0.3% of the German population.

==Research==
===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==

* [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=www.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>

==Social security and disability benefits==

==Access to care==

How many hospitals & doctors, which diagnose and treat ME (estimate):
Rehabilitation offers for ME sufferers:

==Patient groups==
===National groups===

* [http://www.buendnis-mecfs.de/ Bündnis ME/CFS]
* [[Deutsche Gesellschaft für ME/CFS]]
* [[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]]

==Notable advocates==

==Clinicians==

* [http://dr-bieger.de/ Wilfried Bieger], Munich
* [http://www.umweltmedizin-heidelberg.de/ Wolfgang Huber], Heidelberg
* [https://www.drgrothusen.de/ Andreas Grothusen], Hamburg

==Clinics==

* [https://cfc.charite.de/ Charité Fatigue Centrum], Berlin
* [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München], München
* [http://www.spezialklinik-neukirchen.de/ Spezialklinik Neukirchen], Neukirchen
* [http://www.medizin3.uk-erlangen.de/patienten/sprechstunde/?tx_app_consultationlist%5Bconsultation%5D=790&tx_app_consultationlist%5BreturntopageId%5D=2505&tx_app_consultationlist%5Baction%5D=show&tx_app_consultationlist%5Bcontroller%5D=Consultation&cHash=7ad7eacba69a5505f89c288355b18841 Uniklinikum Erlangen], Erlangen

== 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=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|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])

==Blogs ==

* [https://www.cfs-ladestation.de CFS-Ladestation]
* [https://www.youtube.com/channel/UCVcwQQYAdzVtkO5_RXYVKqQ Gwendolin] (vlog)
* [http://www.cfs-aktuell.de/ ME/CFS aktuell] (archive)
* [https://www.me-aktuell.de/ ME aktuell]
* [https://www.me-information.de/ ME-Information]
* [https://meversuscfs.blogspot.com ME vs. CFS]

== 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]
* [https://www.symptome.ch/vbboard/cfids-cfs-me/?daysprune=-1 Symptome.ch]

==See also==

* [[EUROMENE]]

==References==
<references />
[[Category:Countries]]
[[Category:Europe]]
[[Category:Germany]]

Germany

2020-07-07T07:52:15Z

Hannosch:/* Demographics */

[[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> This represents a prevalence of 0.3% of the German population.

==Research==
===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==

* [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=www.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.
* [http://www.rki.de/DE/Content/Gesundheitsmonitoring/Gesundheitsberichterstattung/GesundAZ/Content/C/Chron_Fatigue_Syndrom/Inhalt/CFS_Erkenntnisstand_2015.pdf?__blob=publicationFile 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]].
* [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>

==Social security and disability benefits==

==Access to care==

How many hospitals & doctors, which diagnose and treat ME (estimate):
Rehabilitation offers for ME sufferers:

==Patient groups==
===National groups===

* [http://www.buendnis-mecfs.de/ Bündnis ME/CFS]
* [[Deutsche Gesellschaft für ME/CFS]]
* [[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]]

==Notable advocates==

==Clinicians==

* [http://dr-bieger.de/ Wilfried Bieger], Munich
* [http://www.umweltmedizin-heidelberg.de/ Wolfgang Huber], Heidelberg
* [https://www.drgrothusen.de/ Andreas Grothusen], Hamburg

==Clinics==

* [https://cfc.charite.de/ Charité Fatigue Centrum], Berlin
* [https://www.muenchen-klinik.de/krankenhaus/schwabing/kinderkliniken/kinderheilkunde-jugendmedizin/ Kinderklinik Schwabing der Technischen Universität München], München
* [http://www.spezialklinik-neukirchen.de/ Spezialklinik Neukirchen], Neukirchen
* [http://www.medizin3.uk-erlangen.de/patienten/sprechstunde/?tx_app_consultationlist%5Bconsultation%5D=790&tx_app_consultationlist%5BreturntopageId%5D=2505&tx_app_consultationlist%5Baction%5D=show&tx_app_consultationlist%5Bcontroller%5D=Consultation&cHash=7ad7eacba69a5505f89c288355b18841 Uniklinikum Erlangen], Erlangen

== 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=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|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])

==Blogs ==

* [https://www.cfs-ladestation.de CFS-Ladestation]
* [https://www.youtube.com/channel/UCVcwQQYAdzVtkO5_RXYVKqQ Gwendolin] (vlog)
* [http://www.cfs-aktuell.de/ ME/CFS aktuell] (archive)
* [https://www.me-aktuell.de/ ME aktuell]
* [https://www.me-information.de/ ME-Information]
* [https://meversuscfs.blogspot.com ME vs. CFS]

== 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]
* [https://www.symptome.ch/vbboard/cfids-cfs-me/?daysprune=-1 Symptome.ch]

==See also==

* [[EUROMENE]]

==References==
<references />
[[Category:Countries]]
[[Category:Europe]]
[[Category:Germany]]

Lost Voices Stiftung

2020-07-07T07:51:28Z

Hannosch:/* Notable projects */

The '''Lost Voices Stiftung''' (Lost Voices Foundation) was founded in 2012.<ref>{{Cite web|url=http://www.lost-voices-stiftung.org/die-stiftung/|title=Die Stiftung|website=Lost Voices Stiftung - Hilfe für Menschen mit ME/CFS|language=de-DE|access-date=2019-07-23}}</ref> It's located in Hannover, [[Germany]].

==Aims==
Its aim is the recognition of [[Myalgic encephalomyelitis|ME]] as a neuroimmunological disease and medical treatment to be based on current scientific findings.<ref>{{Cite web|url=http://www.lost-voices-stiftung.org/die-stiftung/stiftungsziele/|title=Stiftungsziele|website=Lost Voices Stiftung - Hilfe für Menschen mit ME/CFS|language=de-DE|access-date=2019-07-23}}</ref> The Lost Voices Foundation awards research fellowships.<ref>{{Cite web|url=http://www.lost-voices-stiftung.org/stipendium/|title=Stipendiumsprogramm Lost Voices Stiftung|website=Lost Voices Stiftung - Hilfe für Menschen mit ME/CFS|language=de-DE|access-date=2019-07-23}}</ref>

==Events==

* May 2018, [[Unrest]] screening and [https://www.youtube.com/watch?v=oqXMKGNDxAU panel discussion]<ref>{{Cite web|url=http://www.lost-voices-stiftung.org/was-ist-me/12-mai-gedenktag/|title=Internationaler ME/CFS-Tag 2019|website=Lost Voices Stiftung - Hilfe für Menschen mit ME/CFS|language=de-DE|access-date=2019-07-23}}</ref>

==Interviews and articles==

== Videos ==
* April 2018, [https://www.youtube.com/watch?v=Mi7oI6IJBow Lost Voices Foundation film]
* May 2019, [https://youtu.be/ExjlmTwmFt4 Talk by founder Nicole Krüger at #MillionsMissing in Berlin]

== Notable projects ==
* Research fellowships<ref>{{Cite web|url=http://www.lost-voices-stiftung.org/stipendium/|title=Stipendiumsprogramm Lost Voices Stiftung|website=Lost Voices Stiftung - Hilfe für Menschen mit ME/CFS|language=de-DE|access-date=2019-07-23}}</ref>
* "Music for ME"<ref>{{Cite web|url=http://www.musicforme.de/|title=Music For Me|website=Music for ME|language=de-DE|access-date=2019-07-23}}</ref>
* Touring exhibition "Leben im Verborgenen"<ref>{{Cite web|url=http://www.lost-voices-stiftung.org/ausstellung/|title=Ausstellung "Leben im Verborgenen"|website=Lost Voices Stiftung - Hilfe für Menschen mit ME/CFS|language=de-DE|access-date=2019-07-23}}</ref> (Hidden Life)

==Online presence==
* [https://www.facebook.com/lost.voices.stiftung/ Facebook]
*[https://twitter.com/lvstiftung?lang=de Twitter]
*[https://www.lost-voices-stiftung.org/ Website]
*[https://www.youtube.com/channel/UC6bRzACFoXaOfZoZ_1xpL5A/videos YouTube channel]

==See also==
* [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Charité Berlin]]

==Learn more==

==References==

[[Category:Patient groups]]
[[Category:German patient groups]]
<references />

MillionsMissing Deutschland

2020-07-07T07:49:24Z

Hannosch:/* Events */

[[File:MillionsMissing Germany.png|thumb|Protest in Berlin 2019 – more at millionsmissing.de]]
'''MillionsMissing Deutschland''' (MillionsMissing Germany) was founded in 2018.<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/|title=Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref> It's a [[Germany|German]] affiliate group of [[MEAction]] and partner of the [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]. MillionsMissing Germany is run by a network of dedicated volunteers.
==Aims==
Its aim is to work towards health equity for people with [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/|title=Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

==Events==
In May 2018 MillionsMissing Germany organized [[Millions Missing protests|#MillionsMissing protests]] in Berlin and Gütersloh and supported a third one, hosted by the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover.<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

In May 2019 MillionsMissing Germany organized #MillionsMissing protests in Berlin, Munich and Halle (Saale). Later that month a protest in front of the German Bundestag (national parliament) took place.<ref>{{Cite web|url=https://www.millionsmissing.de/2019/05/20/70-jahre-grundgesetz-art-1-die-w%C3%BCrde-des-menschen-ist-unantastbar/|title=70 Jahre Grundgesetz – Art. 1: »Die Würde des Menschen ist unantastbar.«|date=2019-05-20|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-22}}</ref>

MillionsMissing Germany organized a Kudoboard for the health policy spokeswoman of the Green Party Maria Klein-Schmeink, who made an inquiry about ME/CFS in the Bundestag. [https://www.kudoboard.com/boards/4YSSVj1y?fbclid=IwAR1J3s3sAkjBDNqpBsidJoYrJqexVbOtROPvHVdn2VE6EONKY_5l6cNNNh4 The Kudoboard] contained over 150 messages from pwME and was presented in printed form in the Bundestag.<ref>{{Cite web|url=https://www.klein-schmeink.de/aktuelles/meldung/treffen-mit-me-cfs-betroffenen-in-berlin|title=Treffen mit ME/CFS-Betroffenen in Berlin|website=Maria Klein-Schmeink|language=de-DE|access-date=2020-07-07}}</ref>

Together with the German Association for ME/CFS and MP Martina Stamm-Fibich, MillionsMissing Germany organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|url=https://www.mecfs.de/parlament-fachgespraech/|website=Deutsche Gesellschaft für ME/CFS|date=2020-03-07|access-date=2020-07-07}}</ref>

Due to the corona crisis in 2020, MillionsMissing Germany had to cancel the #MillionsMissing visibility actions in nine cities and organized a postcard campaign to health minister Jens Spahn and other politicians instead.<ref>{{Cite web|url=https://www.millionsmissing.de/2020/05/01/jens-spahn-sie-haben-post/|title=»Jens Spahn, Sie haben Post !«|date=2020-05-01|website=#MillionsMissing Deutschland|language=de-DE|access-date=2020-07-07}}</ref>

MillionsMissing Germany organizes screenings of the documentary [[Unrest]] together with the German Association for ME/CFS.

==Interviews and articles==
* May 2020, Tagesspiegel: [https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html "Jens Spahn, Sie haben Post!"]<ref>{{Cite web|url=https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html|title=„Jens Spahn, Sie haben Post!“|website=www.tagesspiegel.de|language=de|access-date=2020-07-07}}</ref>
* May 2019, [https://www.millionsmissing.de/2019/05/29/berichterstattung-%C3%BCber-me-cfs-rund-um-den-12-mai/ List of media reports about the #MillionsMissing events in Germany]
* June 2018, BR: [https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]<ref>{{Cite news|url=https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html|title=Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht {{!}}|last=|first=|date=2018-06-26|access-date=2018-08-16|language=|work=Bayerischer Rundfunk|archive-url=|archive-date=|dead-url=}}</ref>
* May 2018, rbb: [https://www.youtube.com/watch?v=TD-wW3Q9rJg "Chronisches Erschöpfungssyndrom anerkennen"]

==Videos==
* May 2020, [https://www.youtube.com/watch?v=lqQsmoa6vbY MillionsMissing Germany Trailer 2020]
* August 2019, [https://www.youtube.com/watch?v=qM-BTK80lk8 "Eine Krankheit im Verborgenen"]
* May 2019, [https://www.youtube.com/watch?v=FweKtoclHAs Protest in front of the German Bundestag]
* May 2019, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=BSBmHW3YKeM&list=PLhGOtt957iy0uxFlXCfsIju-lRrsKF_6K Berlin], [https://www.youtube.com/watch?v=35bDFP0qgcg&list=PLhGOtt957iy3IEvGkE2mQZxcDyWWYSWz9 Halle] and [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&list=PLhGOtt957iy3mQKg4upWhKKL1LYJqNCZ1 Munich]
* May 2019, [https://www.youtube.com/watch?v=TbvWKNCavTU MillionsMissing Germany Trailer 2019]
* May 2018, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=PhOOZbqSrIQ&list=PLhGOtt957iy1A4HC_fXnMIHX4wYZUp964 Berlin] and [https://www.youtube.com/watch?v=PrIDZf3JLTE&list=PLhGOtt957iy30ElZr1M6W1eYa8Y9ZvJ4s Gütersloh]

==Photos==
* May 2019, [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=2115237398774337&__xts__%5B0%5D=68.ARDE0CFHezf539hKtdQRmy1842IYniMjPrdZWVTMTIR0R7gJRZFCgN4CorMBRf8SvX_Q0XofqmTnExbcbdA4dP_R0bL22xzYonRm4KLoTs6oQ9FTZLF-uk2ZMSMh8lESK7XjzssnknAGfHiiaHdNp7L8VhUSorgV7787VV92pKkDtSiAxYspSi_mEqGx8ezOcE5nGmt_JdhBeT89LEepzNHZX1OmKc0_Ah41CNHbJnsfKMZFYaTacue_IeNV7w5_IgvhftYexaE45JA8yoW-gLebO-ZWTFOuAlK_yfV23g80NyK7K3MhtOY5gSn_rxOYRHjqV3Xqbv-SDclcqvHRaGDhB5ZMgOrt5w2ULXtCIlR0DOlj8Z58l1TLhzxcDVDYn6Z2CrpeunCn2JMHgLJchJxg9zZvX_P3IDRdGJDhE_A7nqwW70HKC7Q7tUv5y69i7Z3Fmtppdnb0Igoe9f9IdHnHER5Y7D3OcZ2m_HYFVl_ltMh0O569VxwpId13oNK8OhE_9XiwyYAzmDoCfNavSc3w1YEBolrqz28tO7JnuOKtKoQmf3JsFOOoxnHNNUJNml6ctONTWSIacUE01yjGLQ_6ahC2y5sE5bzH9BurfRpdqUpOyKkFxqYmuFclRwsLcpYex8kE2rQr2rFiIlLppxB-bh_J4fBiq9UF1wMN6gl5pWMou1UTA0xj2s-P5NlkI_XquXThNjLb1IS7DrpPUBDTs2G4KWLLLp8uHo0Ex883MUl5bVkN-X4UJAhWG-GKA0hW_eMUVtuo7rpbx2drMo9jIRvqZ9IqgHG8MN4RLlQAROoLLL97KEM_56V7ac5qWiph9FfixWwstzjhh14XIZRcY-y2esdjiw6HuDQhegrVkMKxt-rj7eQVa2Y&__tn__=-UC-R Protest in front of the German Bundestag]
* May 2019, [https://meaction.smugmug.com/MillionsMissing-2019/Europe/Germany #MillionsMissing visibility actions in Berlin, Munich and Halle]
* May 2018, #MillionsMissing visibility actions in [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Berlin/ Berlin], [https://meaction.smugmug.com/MillionsMissing-2018/Europe/G%C3%BCtersloh Gütersloh] and [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Hannover Hannover]
* Ongoing campaign: [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=1867275806903832 "Ich will mein Leben zurück"] (I want my life back)

==Online presence==
* [https://www.millionsmissing.de Website]

* [https://www.facebook.com/mmissinggermany/ Facebook page]
* [https://www.facebook.com/groups/MEActionDeutschland/ Facebook group]

* [https://twitter.com/MMissingGermany Twitter]

* [https://www.youtube.com/channel/UCEaUZZDxY72llnlHmpZ2dJg/videos YouTube channel]
* [https://www.instagram.com/mmissinggermany/?hl=de Instagram]

* [https://www.flickr.com/photos/millionsmissingdeutschland/ flickr]

==See also==
* [[Millions Missing protests|#MillionsMissing protests]]
* [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]
[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Deutsche Gesellschaft für ME/CFS

2020-07-07T07:44:32Z

Hannosch:/* Aims */ Added names and internal links

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the team of Prof. [[Carmen Scheibenbogen]] at the university hospital [[Charité Berlin|Charité]] in Berlin, the team of Prof. [[Uta Behrends]] at the university hospital TU Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]].

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

It organized an ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

Together with #MillionsMissing Germany and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|url=https://www.mecfs.de/parlament-fachgespraech/|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|date=2020-03-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2020-07-07}}</ref>

==Interviews and articles==
* May 2019, ARD: [https://www.daserste.de/information/politik-weltgeschehen/mittagsmagazin/videos/mit-19-jahren-pflegefall-video-100.html "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg]
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

MillionsMissing Deutschland

2020-07-07T07:39:29Z

Hannosch:/* Events */ Added Unrest screenings

[[File:MillionsMissing Germany.png|thumb|Protest in Berlin 2019 – more at millionsmissing.de]]
'''MillionsMissing Deutschland''' (MillionsMissing Germany) was founded in 2018.<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/|title=Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref> It's a [[Germany|German]] affiliate group of [[MEAction]] and partner of the [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]. MillionsMissing Germany is run by a network of dedicated volunteers.
==Aims==
Its aim is to work towards health equity for people with [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/|title=Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

==Events==
In May 2018 MillionsMissing Germany organized [[Millions Missing protests|#MillionsMissing protests]] in Berlin and Gütersloh and supported a third one, hosted by the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover.<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

In May 2019 MillionsMissing Germany organized #MillionsMissing protests in Berlin, Munich and Halle (Saale). Later that month a protest in front of the German Bundestag (national parliament) took place.<ref>{{Cite web|url=https://www.millionsmissing.de/2019/05/20/70-jahre-grundgesetz-art-1-die-w%C3%BCrde-des-menschen-ist-unantastbar/|title=70 Jahre Grundgesetz – Art. 1: »Die Würde des Menschen ist unantastbar.«|date=2019-05-20|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-22}}</ref>

MillionsMissing Germany organized a Kudoboard for the health policy spokeswoman of the Green Party Maria Klein-Schmeink, who made an inquiry about ME/CFS in the Bundestag. [https://www.kudoboard.com/boards/4YSSVj1y?fbclid=IwAR1J3s3sAkjBDNqpBsidJoYrJqexVbOtROPvHVdn2VE6EONKY_5l6cNNNh4 The Kudoboard] contained over 150 messages from pwME and was presented in printed form in the Bundestag.<ref>{{Cite web|url=https://www.klein-schmeink.de/aktuelles/meldung/treffen-mit-me-cfs-betroffenen-in-berlin|title=Treffen mit ME/CFS-Betroffenen in Berlin|website=Maria Klein-Schmeink|language=de-DE|access-date=2020-07-07}}</ref>

Together with the German Association for ME/CFS and MP Martina Stamm-Fibich, MillionsMissing Germany organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|url=https://www.mecfs.de/parlament-fachgespraech/|website=Deutsche Gesellschaft für ME/CFS|date=2020-03-07|access-date=2020-07-07}}</ref>

Due to the corona crisis in 2020, MillionsMissing Germany had to cancel the #MillionsMissing visibility actions in nine cities and organized a postcard campaign to health minister Jens Spahn and other politicians instead.<ref>{{Cite web|url=https://www.millionsmissing.de/2020/05/01/jens-spahn-sie-haben-post/|title=»Jens Spahn, Sie haben Post !«|date=2020-05-01|website=#MillionsMissing Deutschland|language=de-DE|access-date=2020-07-07}}</ref>MillionsMissing Germany organizes screenings of the documentary [[Unrest]] together with the German Association for ME/CFS.

==Interviews and articles==
* May 2020, Tagesspiegel: [https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html "Jens Spahn, Sie haben Post!"]<ref>{{Cite web|url=https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html|title=„Jens Spahn, Sie haben Post!“|website=www.tagesspiegel.de|language=de|access-date=2020-07-07}}</ref>
* May 2019, [https://www.millionsmissing.de/2019/05/29/berichterstattung-%C3%BCber-me-cfs-rund-um-den-12-mai/ List of media reports about the #MillionsMissing events in Germany]
* June 2018, BR: [https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]<ref>{{Cite news|url=https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html|title=Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht {{!}}|last=|first=|date=2018-06-26|access-date=2018-08-16|language=|work=Bayerischer Rundfunk|archive-url=|archive-date=|dead-url=}}</ref>
* May 2018, rbb: [https://www.youtube.com/watch?v=TD-wW3Q9rJg "Chronisches Erschöpfungssyndrom anerkennen"]

==Videos==
* May 2020, [https://www.youtube.com/watch?v=lqQsmoa6vbY MillionsMissing Germany Trailer 2020]
* August 2019, [https://www.youtube.com/watch?v=qM-BTK80lk8 "Eine Krankheit im Verborgenen"]
* May 2019, [https://www.youtube.com/watch?v=FweKtoclHAs Protest in front of the German Bundestag]
* May 2019, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=BSBmHW3YKeM&list=PLhGOtt957iy0uxFlXCfsIju-lRrsKF_6K Berlin], [https://www.youtube.com/watch?v=35bDFP0qgcg&list=PLhGOtt957iy3IEvGkE2mQZxcDyWWYSWz9 Halle] and [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&list=PLhGOtt957iy3mQKg4upWhKKL1LYJqNCZ1 Munich]
* May 2019, [https://www.youtube.com/watch?v=TbvWKNCavTU MillionsMissing Germany Trailer 2019]
* May 2018, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=PhOOZbqSrIQ&list=PLhGOtt957iy1A4HC_fXnMIHX4wYZUp964 Berlin] and [https://www.youtube.com/watch?v=PrIDZf3JLTE&list=PLhGOtt957iy30ElZr1M6W1eYa8Y9ZvJ4s Gütersloh]

==Photos==
* May 2019, [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=2115237398774337&__xts__%5B0%5D=68.ARDE0CFHezf539hKtdQRmy1842IYniMjPrdZWVTMTIR0R7gJRZFCgN4CorMBRf8SvX_Q0XofqmTnExbcbdA4dP_R0bL22xzYonRm4KLoTs6oQ9FTZLF-uk2ZMSMh8lESK7XjzssnknAGfHiiaHdNp7L8VhUSorgV7787VV92pKkDtSiAxYspSi_mEqGx8ezOcE5nGmt_JdhBeT89LEepzNHZX1OmKc0_Ah41CNHbJnsfKMZFYaTacue_IeNV7w5_IgvhftYexaE45JA8yoW-gLebO-ZWTFOuAlK_yfV23g80NyK7K3MhtOY5gSn_rxOYRHjqV3Xqbv-SDclcqvHRaGDhB5ZMgOrt5w2ULXtCIlR0DOlj8Z58l1TLhzxcDVDYn6Z2CrpeunCn2JMHgLJchJxg9zZvX_P3IDRdGJDhE_A7nqwW70HKC7Q7tUv5y69i7Z3Fmtppdnb0Igoe9f9IdHnHER5Y7D3OcZ2m_HYFVl_ltMh0O569VxwpId13oNK8OhE_9XiwyYAzmDoCfNavSc3w1YEBolrqz28tO7JnuOKtKoQmf3JsFOOoxnHNNUJNml6ctONTWSIacUE01yjGLQ_6ahC2y5sE5bzH9BurfRpdqUpOyKkFxqYmuFclRwsLcpYex8kE2rQr2rFiIlLppxB-bh_J4fBiq9UF1wMN6gl5pWMou1UTA0xj2s-P5NlkI_XquXThNjLb1IS7DrpPUBDTs2G4KWLLLp8uHo0Ex883MUl5bVkN-X4UJAhWG-GKA0hW_eMUVtuo7rpbx2drMo9jIRvqZ9IqgHG8MN4RLlQAROoLLL97KEM_56V7ac5qWiph9FfixWwstzjhh14XIZRcY-y2esdjiw6HuDQhegrVkMKxt-rj7eQVa2Y&__tn__=-UC-R Protest in front of the German Bundestag]
* May 2019, [https://meaction.smugmug.com/MillionsMissing-2019/Europe/Germany #MillionsMissing visibility actions in Berlin, Munich and Halle]
* May 2018, #MillionsMissing visibility actions in [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Berlin/ Berlin], [https://meaction.smugmug.com/MillionsMissing-2018/Europe/G%C3%BCtersloh Gütersloh] and [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Hannover Hannover]
* Ongoing campaign: [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=1867275806903832 "Ich will mein Leben zurück"] (I want my life back)

==Online presence==
* [https://www.millionsmissing.de Website]

* [https://www.facebook.com/mmissinggermany/ Facebook page]
* [https://www.facebook.com/groups/MEActionDeutschland/ Facebook group]

* [https://twitter.com/MMissingGermany Twitter]

* [https://www.youtube.com/channel/UCEaUZZDxY72llnlHmpZ2dJg/videos YouTube channel]
* [https://www.instagram.com/mmissinggermany/?hl=de Instagram]

* [https://www.flickr.com/photos/millionsmissingdeutschland/ flickr]

==See also==
* [[Millions Missing protests|#MillionsMissing protests]]
* [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]
[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

MillionsMissing Deutschland

2020-07-07T07:34:55Z

Hannosch:/* Videos */

[[File:MillionsMissing Germany.png|thumb|Protest in Berlin 2019 – more at millionsmissing.de]]
'''MillionsMissing Deutschland''' (MillionsMissing Germany) was founded in 2018.<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/|title=Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref> It's a [[Germany|German]] affiliate group of [[MEAction]] and partner of the [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]. MillionsMissing Germany is run by a network of dedicated volunteers.
==Aims==
Its aim is to work towards health equity for people with [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/|title=Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

==Events==
In May 2018 MillionsMissing Germany organized [[Millions Missing protests|#MillionsMissing protests]] in Berlin and Gütersloh and supported a third one, hosted by the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover.<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

In May 2019 MillionsMissing Germany organized #MillionsMissing protests in Berlin, Munich and Halle (Saale). Later that month a protest in front of the German Bundestag (national parliament) took place.<ref>{{Cite web|url=https://www.millionsmissing.de/2019/05/20/70-jahre-grundgesetz-art-1-die-w%C3%BCrde-des-menschen-ist-unantastbar/|title=70 Jahre Grundgesetz – Art. 1: »Die Würde des Menschen ist unantastbar.«|date=2019-05-20|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-22}}</ref>

MillionsMissing Germany organized a Kudoboard for the health policy spokeswoman of the Green Party Maria Klein-Schmeink, who made an inquiry about ME/CFS in the Bundestag. [https://www.kudoboard.com/boards/4YSSVj1y?fbclid=IwAR1J3s3sAkjBDNqpBsidJoYrJqexVbOtROPvHVdn2VE6EONKY_5l6cNNNh4 The Kudoboard] contained over 150 messages from pwME and was presented in printed form in the Bundestag.<ref>{{Cite web|url=https://www.klein-schmeink.de/aktuelles/meldung/treffen-mit-me-cfs-betroffenen-in-berlin|title=Treffen mit ME/CFS-Betroffenen in Berlin|website=Maria Klein-Schmeink|language=de-DE|access-date=2020-07-07}}</ref>

Together with the German Association for ME/CFS and MP Martina Stamm-Fibich, MillionsMissing Germany organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|url=https://www.mecfs.de/parlament-fachgespraech/|website=Deutsche Gesellschaft für ME/CFS|date=2020-03-07|access-date=2020-07-07}}</ref>

Due to the corona crisis in 2020, MillionsMissing Germany had to cancel the #MillionsMissing visibility actions in nine cities and organised a postcard campaign to health minister Jens Spahn and other politicians instead.<ref>{{Cite web|url=https://www.millionsmissing.de/2020/05/01/jens-spahn-sie-haben-post/|title=»Jens Spahn, Sie haben Post !«|date=2020-05-01|website=#MillionsMissing Deutschland|language=de-DE|access-date=2020-07-07}}</ref>

==Interviews and articles==
* May 2020, Tagesspiegel: [https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html "Jens Spahn, Sie haben Post!"]<ref>{{Cite web|url=https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html|title=„Jens Spahn, Sie haben Post!“|website=www.tagesspiegel.de|language=de|access-date=2020-07-07}}</ref>
* May 2019, [https://www.millionsmissing.de/2019/05/29/berichterstattung-%C3%BCber-me-cfs-rund-um-den-12-mai/ List of media reports about the #MillionsMissing events in Germany]
* June 2018, BR: [https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]<ref>{{Cite news|url=https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html|title=Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht {{!}}|last=|first=|date=2018-06-26|access-date=2018-08-16|language=|work=Bayerischer Rundfunk|archive-url=|archive-date=|dead-url=}}</ref>
* May 2018, rbb: [https://www.youtube.com/watch?v=TD-wW3Q9rJg "Chronisches Erschöpfungssyndrom anerkennen"]

==Videos==
* May 2020, [https://www.youtube.com/watch?v=lqQsmoa6vbY MillionsMissing Germany Trailer 2020]
* August 2019, [https://www.youtube.com/watch?v=qM-BTK80lk8 "Eine Krankheit im Verborgenen"]
* May 2019, [https://www.youtube.com/watch?v=FweKtoclHAs Protest in front of the German Bundestag]
* May 2019, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=BSBmHW3YKeM&list=PLhGOtt957iy0uxFlXCfsIju-lRrsKF_6K Berlin], [https://www.youtube.com/watch?v=35bDFP0qgcg&list=PLhGOtt957iy3IEvGkE2mQZxcDyWWYSWz9 Halle] and [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&list=PLhGOtt957iy3mQKg4upWhKKL1LYJqNCZ1 Munich]
* May 2019, [https://www.youtube.com/watch?v=TbvWKNCavTU MillionsMissing Germany Trailer 2019]
* May 2018, #MillionsMissing visibility actions in [https://www.youtube.com/watch?v=PhOOZbqSrIQ&list=PLhGOtt957iy1A4HC_fXnMIHX4wYZUp964 Berlin] and [https://www.youtube.com/watch?v=PrIDZf3JLTE&list=PLhGOtt957iy30ElZr1M6W1eYa8Y9ZvJ4s Gütersloh]

==Photos==
* May 2019, [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=2115237398774337&__xts__%5B0%5D=68.ARDE0CFHezf539hKtdQRmy1842IYniMjPrdZWVTMTIR0R7gJRZFCgN4CorMBRf8SvX_Q0XofqmTnExbcbdA4dP_R0bL22xzYonRm4KLoTs6oQ9FTZLF-uk2ZMSMh8lESK7XjzssnknAGfHiiaHdNp7L8VhUSorgV7787VV92pKkDtSiAxYspSi_mEqGx8ezOcE5nGmt_JdhBeT89LEepzNHZX1OmKc0_Ah41CNHbJnsfKMZFYaTacue_IeNV7w5_IgvhftYexaE45JA8yoW-gLebO-ZWTFOuAlK_yfV23g80NyK7K3MhtOY5gSn_rxOYRHjqV3Xqbv-SDclcqvHRaGDhB5ZMgOrt5w2ULXtCIlR0DOlj8Z58l1TLhzxcDVDYn6Z2CrpeunCn2JMHgLJchJxg9zZvX_P3IDRdGJDhE_A7nqwW70HKC7Q7tUv5y69i7Z3Fmtppdnb0Igoe9f9IdHnHER5Y7D3OcZ2m_HYFVl_ltMh0O569VxwpId13oNK8OhE_9XiwyYAzmDoCfNavSc3w1YEBolrqz28tO7JnuOKtKoQmf3JsFOOoxnHNNUJNml6ctONTWSIacUE01yjGLQ_6ahC2y5sE5bzH9BurfRpdqUpOyKkFxqYmuFclRwsLcpYex8kE2rQr2rFiIlLppxB-bh_J4fBiq9UF1wMN6gl5pWMou1UTA0xj2s-P5NlkI_XquXThNjLb1IS7DrpPUBDTs2G4KWLLLp8uHo0Ex883MUl5bVkN-X4UJAhWG-GKA0hW_eMUVtuo7rpbx2drMo9jIRvqZ9IqgHG8MN4RLlQAROoLLL97KEM_56V7ac5qWiph9FfixWwstzjhh14XIZRcY-y2esdjiw6HuDQhegrVkMKxt-rj7eQVa2Y&__tn__=-UC-R Protest in front of the German Bundestag]
* May 2019, [https://meaction.smugmug.com/MillionsMissing-2019/Europe/Germany #MillionsMissing visibility actions in Berlin, Munich and Halle]
* May 2018, #MillionsMissing visibility actions in [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Berlin/ Berlin], [https://meaction.smugmug.com/MillionsMissing-2018/Europe/G%C3%BCtersloh Gütersloh] and [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Hannover Hannover]
* Ongoing campaign: [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=1867275806903832 "Ich will mein Leben zurück"] (I want my life back)

==Online presence==
* [https://www.millionsmissing.de Website]

* [https://www.facebook.com/mmissinggermany/ Facebook page]
* [https://www.facebook.com/groups/MEActionDeutschland/ Facebook group]

* [https://twitter.com/MMissingGermany Twitter]

* [https://www.youtube.com/channel/UCEaUZZDxY72llnlHmpZ2dJg/videos YouTube channel]
* [https://www.instagram.com/mmissinggermany/?hl=de Instagram]

* [https://www.flickr.com/photos/millionsmissingdeutschland/ flickr]

==See also==
* [[Millions Missing protests|#MillionsMissing protests]]
* [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]
[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

MillionsMissing Deutschland

2020-07-07T07:32:39Z

Hannosch:/* Events */ Added 2 events

[[File:MillionsMissing Germany.png|thumb|Protest in Berlin 2019 – more at millionsmissing.de]]
'''MillionsMissing Deutschland''' (MillionsMissing Germany) was founded in 2018.<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/|title=Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref> It's a [[Germany|German]] affiliate group of [[MEAction]] and partner of the [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]. MillionsMissing Germany is run by a network of dedicated volunteers.
==Aims==
Its aim is to work towards health equity for people with [[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]] (ME).<ref>{{Cite web|url=https://www.millionsmissing.de/über-mmd/|title=Über #MillionsMissing Deutschland|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

==Events==
In May 2018 MillionsMissing Germany organized [[Millions Missing protests|#MillionsMissing protests]] in Berlin and Gütersloh and supported a third one, hosted by the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover.<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-21}}</ref>

In May 2019 MillionsMissing Germany organized #MillionsMissing protests in Berlin, Munich and Halle (Saale). Later that month a protest in front of the German Bundestag (national parliament) took place.<ref>{{Cite web|url=https://www.millionsmissing.de/2019/05/20/70-jahre-grundgesetz-art-1-die-w%C3%BCrde-des-menschen-ist-unantastbar/|title=70 Jahre Grundgesetz – Art. 1: »Die Würde des Menschen ist unantastbar.«|date=2019-05-20|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-07-22}}</ref>

MillionsMissing Germany organized a Kudoboard for the health policy spokeswoman of the Green Party Maria Klein-Schmeink, who made an inquiry about ME/CFS in the Bundestag. [https://www.kudoboard.com/boards/4YSSVj1y?fbclid=IwAR1J3s3sAkjBDNqpBsidJoYrJqexVbOtROPvHVdn2VE6EONKY_5l6cNNNh4 The Kudoboard] contained over 150 messages from pwME and was presented in printed form in the Bundestag.<ref>{{Cite web|url=https://www.klein-schmeink.de/aktuelles/meldung/treffen-mit-me-cfs-betroffenen-in-berlin|title=Treffen mit ME/CFS-Betroffenen in Berlin|website=Maria Klein-Schmeink|language=de-DE|access-date=2020-07-07}}</ref>

Together with the German Association for ME/CFS and MP Martina Stamm-Fibich, MillionsMissing Germany organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|url=https://www.mecfs.de/parlament-fachgespraech/|website=Deutsche Gesellschaft für ME/CFS|date=2020-03-07|access-date=2020-07-07}}</ref>

Due to the corona crisis in 2020, MillionsMissing Germany had to cancel the #MillionsMissing visibility actions in nine cities and organised a postcard campaign to health minister Jens Spahn and other politicians instead.<ref>{{Cite web|url=https://www.millionsmissing.de/2020/05/01/jens-spahn-sie-haben-post/|title=»Jens Spahn, Sie haben Post !«|date=2020-05-01|website=#MillionsMissing Deutschland|language=de-DE|access-date=2020-07-07}}</ref>

==Interviews and articles==
* May 2020, Tagesspiegel: [https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html "Jens Spahn, Sie haben Post!"]<ref>{{Cite web|url=https://www.tagesspiegel.de/politik/chronisches-fatigue-syndrom-me-cfs-jens-spahn-sie-haben-post/25820834.html|title=„Jens Spahn, Sie haben Post!“|website=www.tagesspiegel.de|language=de|access-date=2020-07-07}}</ref>
* May 2019, [https://www.millionsmissing.de/2019/05/29/berichterstattung-%C3%BCber-me-cfs-rund-um-den-12-mai/ List of media reports about the #MillionsMissing events in Germany]
* June 2018, BR: [https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]<ref>{{Cite news|url=https://www.br.de/themen/wissen/me-cfs-myalgische-enzephalomyelitis-erschoepfungssyndrom-chronisch-mecfs-grippe-krank-108.html|title=Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht {{!}}|last=|first=|date=2018-06-26|access-date=2018-08-16|language=|work=Bayerischer Rundfunk|archive-url=|archive-date=|dead-url=}}</ref>
* May 2018, rbb: [https://www.youtube.com/watch?v=TD-wW3Q9rJg "Chronisches Erschöpfungssyndrom anerkennen"]

==Videos==
* May 2020, [https://www.youtube.com/watch?v=lqQsmoa6vbY MillionsMissing Germany Trailer 2020]
* May 2019, [https://www.youtube.com/watch?v=TbvWKNCavTU MillionsMissing Germany Trailer 2019]
* August 2019, [https://www.youtube.com/watch?v=qM-BTK80lk8 "Eine Krankheit im Verborgenen"]
* May 2019, [https://www.youtube.com/watch?v=FweKtoclHAs Protest in front of the German Bundestag]
* May 2019, #MillionsMissing in [https://www.youtube.com/watch?v=BSBmHW3YKeM&list=PLhGOtt957iy0uxFlXCfsIju-lRrsKF_6K Berlin], [https://www.youtube.com/watch?v=35bDFP0qgcg&list=PLhGOtt957iy3IEvGkE2mQZxcDyWWYSWz9 Halle] and [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&list=PLhGOtt957iy3mQKg4upWhKKL1LYJqNCZ1 Munich]
* May 2018, #MillionsMissing in [https://www.youtube.com/watch?v=PhOOZbqSrIQ&list=PLhGOtt957iy1A4HC_fXnMIHX4wYZUp964 Berlin] and [https://www.youtube.com/watch?v=PrIDZf3JLTE&list=PLhGOtt957iy30ElZr1M6W1eYa8Y9ZvJ4s Gütersloh]

==Photos==
* May 2019, [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=2115237398774337&__xts__%5B0%5D=68.ARDE0CFHezf539hKtdQRmy1842IYniMjPrdZWVTMTIR0R7gJRZFCgN4CorMBRf8SvX_Q0XofqmTnExbcbdA4dP_R0bL22xzYonRm4KLoTs6oQ9FTZLF-uk2ZMSMh8lESK7XjzssnknAGfHiiaHdNp7L8VhUSorgV7787VV92pKkDtSiAxYspSi_mEqGx8ezOcE5nGmt_JdhBeT89LEepzNHZX1OmKc0_Ah41CNHbJnsfKMZFYaTacue_IeNV7w5_IgvhftYexaE45JA8yoW-gLebO-ZWTFOuAlK_yfV23g80NyK7K3MhtOY5gSn_rxOYRHjqV3Xqbv-SDclcqvHRaGDhB5ZMgOrt5w2ULXtCIlR0DOlj8Z58l1TLhzxcDVDYn6Z2CrpeunCn2JMHgLJchJxg9zZvX_P3IDRdGJDhE_A7nqwW70HKC7Q7tUv5y69i7Z3Fmtppdnb0Igoe9f9IdHnHER5Y7D3OcZ2m_HYFVl_ltMh0O569VxwpId13oNK8OhE_9XiwyYAzmDoCfNavSc3w1YEBolrqz28tO7JnuOKtKoQmf3JsFOOoxnHNNUJNml6ctONTWSIacUE01yjGLQ_6ahC2y5sE5bzH9BurfRpdqUpOyKkFxqYmuFclRwsLcpYex8kE2rQr2rFiIlLppxB-bh_J4fBiq9UF1wMN6gl5pWMou1UTA0xj2s-P5NlkI_XquXThNjLb1IS7DrpPUBDTs2G4KWLLLp8uHo0Ex883MUl5bVkN-X4UJAhWG-GKA0hW_eMUVtuo7rpbx2drMo9jIRvqZ9IqgHG8MN4RLlQAROoLLL97KEM_56V7ac5qWiph9FfixWwstzjhh14XIZRcY-y2esdjiw6HuDQhegrVkMKxt-rj7eQVa2Y&__tn__=-UC-R Protest in front of the German Bundestag]
* May 2019, [https://meaction.smugmug.com/MillionsMissing-2019/Europe/Germany #MillionsMissing in Berlin, Munich and Halle]
* May 2018, #MillionsMissing in [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Berlin/ Berlin], [https://meaction.smugmug.com/MillionsMissing-2018/Europe/G%C3%BCtersloh Gütersloh] and [https://meaction.smugmug.com/MillionsMissing-2018/Europe/Hannover Hannover]
* Ongoing campaign: [https://www.facebook.com/pg/mmissinggermany/photos/?tab=album&album_id=1867275806903832 "Ich will mein Leben zurück"] (I want my life back)

==Online presence==
* [https://www.millionsmissing.de Website]

* [https://www.facebook.com/mmissinggermany/ Facebook page]
* [https://www.facebook.com/groups/MEActionDeutschland/ Facebook group]

* [https://twitter.com/MMissingGermany Twitter]

* [https://www.youtube.com/channel/UCEaUZZDxY72llnlHmpZ2dJg/videos YouTube channel]
* [https://www.instagram.com/mmissinggermany/?hl=de Instagram]

* [https://www.flickr.com/photos/millionsmissingdeutschland/ flickr]

==See also==
* [[Millions Missing protests|#MillionsMissing protests]]
* [[Deutsche Gesellschaft für ME/CFS|German Association for ME/CFS]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]
[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Deutsche Gesellschaft für ME/CFS

2020-07-07T07:16:54Z

Hannosch:/* Notable projects */ Added foot note

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the university hospital [[Charité Berlin|Charité]] in Berlin, the university hospital TU Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]].

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

It organized an ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

Together with #MillionsMissing Germany and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.<ref>{{Cite web|url=https://www.mecfs.de/parlament-fachgespraech/|title=Erstes Parlamentarisches Fachgespräch über ME/CFS im Bundestag|date=2020-03-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2020-07-07}}</ref>

==Interviews and articles==
* May 2019, ARD: [https://www.daserste.de/information/politik-weltgeschehen/mittagsmagazin/videos/mit-19-jahren-pflegefall-video-100.html "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg]
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2020-07-07T07:08:19Z

Hannosch:/* Online presence */ Deleted Instagram, added Vimeo

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the university hospital [[Charité Berlin|Charité]] in Berlin, the university hospital TU Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]].

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

It organized an ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

Together with #MillionsMissing Germany and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.

==Interviews and articles==
* May 2019, ARD: [https://www.daserste.de/information/politik-weltgeschehen/mittagsmagazin/videos/mit-19-jahren-pflegefall-video-100.html "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg]
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://vimeo.com/user57689412 Vimeo]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2020-07-07T07:06:11Z

Hannosch:/* Videos */ Added videos of 1. conference

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the university hospital [[Charité Berlin|Charité]] in Berlin, the university hospital TU München in Munich, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]].

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

It organized an ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

Together with #MillionsMissing Germany and MP Martina Stamm-Fibich, the German Association organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag in March 2020.

==Interviews and articles==
* May 2019, ARD: [https://www.daserste.de/information/politik-weltgeschehen/mittagsmagazin/videos/mit-19-jahren-pflegefall-video-100.html "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* June 2019, [https://vimeo.com/showcase/mecfs-forum Presentations at the first ME/CFS conference in Hamburg]
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://www.instagram.com/dg_mecfs/ Instagram]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

Millions Missing protests

2020-03-12T13:18:55Z

Hannosch:Added 2019

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by the [[The MEAction Network|MEAction Network]] with the first protests held in twelve cities around the world in May and June 2016, and further protests occurring at least yearly since. The protests originally took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world, though some locations branched out from this format. Protest also occurred online so that homebound and bedridden patients could also participate.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==May 2019 protests==
* [https://meaction.smugmug.com/MillionsMissing-2019 Photos]

==May 2018 protests==
The Millions Missing protests were renewed for a third year running in May 2018, to coincide with ME Awareness Week. On this occasion, the number of protests were much larger, with actions in over 100 cities scheduled beforehand<ref>http://millionsmissing.meaction.net</ref> and over 300 visibility actions recorded worldwide<ref>https://mailchi.mp/meaction/millionsmissing-went-global-vj515u3wfz-2264657?e=</ref>. [https://www.meaction.net/reach/press-coverage/press-coverage-millionsmissing/ Press coverage] of the protests has become increasingly extensive, possibly in part due to the critical success of the [[Unrest|''Unrest'']] documentary. Among the demands made by protesters was a significant increase in funding into the illness by the US [[National Institutes of Health]] (NIH).<ref>https://www.meaction.net/2018/04/30/why-were-targeting-the-nih-for-millionsmissing/</ref>

===United States===
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Denver Photos from Denver]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Minneapolis Photos from Minneapolis]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Orlando Photos from Orlando]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Tucson Photos from Tucson]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Atlanta Photos from Atlanta]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/New-York-City Photos from New York]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Boston Photos from Boston]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Los-Angeles Photos from Los Angeles]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/San-Francisco Photos from San Francisco]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Burlington Photos from Burlington]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Rochester Photos from Rochester]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Washington-DC Photos from Washington, DC]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Seattle Photos from Seattle]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Morristown Photos from Morristown]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Rock-Spring Photos from Rock Spring]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Chicago Photos from Chicago]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Charter-Twp-of-Clinton-Detroit Photos from Detroit]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Eau-Claire Photos from Eau Claire]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Santa-Barbara- Photos from Santa Barbara]

===South America===
*[https://meaction.smugmug.com/MillionsMissing-2018/Mexico-City Photos from Mexico City, Mexico]

===Canada===
*[https://meaction.smugmug.com/MillionsMissing-2018/Ottawa Photos from Ottawa, Canada]
*[https://meaction.smugmug.com/MillionsMissing-2018/Toronto Photos from Toronto, Canada]

===United Kingdom===
*[[Millions missing 2018 - Sheffield photos|Photos from Sheffield, UK - page 1]], [https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Sheffield page 2]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Edinburgh Photos from Edinburgh, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Hull Photos from Hull, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/London Photos from London, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/St-Helens Photos from St Helens, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Liverpool Photos from Liverpool, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Bristol Photos from Bristol, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Southampton Photos from Southampton, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Newry Photos from Newry, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Manchester Photos from Manchester, UK]

===Europe===
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Bielefeld Photos from Bielefeld, Germany]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Göteburg Photos from Göteburg, Sweden]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Akureyri Photos from Akureyri, Iceland]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Stockholm Photos from Stockholm, Sweden]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Berlin Photos from Berlin, Germany]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Bilbao Photos from Bilbao, Spain]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Prague Photos from Prague, Czech Republic]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Châteaubourg Photos from Châteaubourg, France]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Odense Photos from Odense, Denmark]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Copenhagen Photos from Copenhagen, Denmark]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Helsinki Photos from Helsinki, Finland]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Tønsberg Photos from Tønsberg, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Stavanger Photos from Stavanger, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Geneva Photos from Geneva, Switzerland]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Mo-i-Rana Photos from Moi i Rana, Norway]

===Asia===
*[https://meaction.smugmug.com/MillionsMissing-2018/Tokyo Photos from Tokyo, Japan]

===Africa===
*[https://meaction.smugmug.com/MillionsMissing-2018/Accra Photos from Accra, Ghana]

===Australia/New Zealand===
*[https://meaction.smugmug.com/MillionsMissing-2018/Australia/Melbourne Photos from Melbourne, Australia]
*[https://meaction.smugmug.com/MillionsMissing-2018/Australia/Sydney Photos from Sydney, Australia]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Hamilton Photos from Hamilton, New Zealand]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Wellington Photos from Wellington, New Zealand]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Auckland Photos from Aukland, New Zealand]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Christchurch Photos from Christchurch, New Zealand]

===Other===
*[https://meaction.smugmug.com/MillionsMissing-2018/Virtual-Visibility-Actions Photographs from virtual visibility actions]

==May 2017 Protests==
The May 2017 Millions Missing protests were again arranged to coincide with ME Awareness Week. Protestors took to the streets in 18 cities in seven countries to demand change. The protestors asked for increased government funding for research, clinical trials, medical education and public awareness.

===United Kingdom===
*[https://meaction.smugmug.com/MillionsMissing-2017/Dublin-Ireland Photos from Dublin, Ireland]
*[https://meaction.smugmug.com/MillionsMissing-2017/Isle-of-Man-UK Photos from Isle of Man, UK]
*[https://meaction.smugmug.com/MillionsMissing-2017/Edinburgh-UK Photos from Edinburgh, UK]
*[https://meaction.smugmug.com/MillionsMissing-2017/Birmingham-UK Photos from Birmingham, UK]

===Europe===
*[https://meaction.smugmug.com/MillionsMissing-2017/Copenhagen-Denmark Photos from Copenhagen, Denmark]
*[https://meaction.smugmug.com/MillionsMissing-2017/Zwolle-Netherlands Photos from Zwolle, Netherlands]
*[https://meaction.smugmug.com/MillionsMissing-2017/Fredrikstad-Norway Photos from Fredrikstad, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2017/Oslo-Norway Photos from Oslo, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2017/Sandefjord-NO Photos from Sandefjord, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2017/Reykjavik-Iceland Photos from Reykjavik, Iceland]

===Australia===
*[https://meaction.smugmug.com/MillionsMissing-2017/Sydney Photos from Sydney, Australia]
*[https://meaction.smugmug.com/MillionsMissing-2017/Brisbane-Australia Photos from Brisbane, Australia]

==September 2016 protests==
On September 27th 2016, protests occurred in 24 cities around the world.

===United States===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/San-Francisco-CA Photos from San Francisco, CA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Washington-DC Photos from Washington, DC]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Lansing-MI Photos from Lansing, MI]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Seattle-WA Photos from Seattle, WA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Atlanta-GA Photos from Atlanta, GA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/New-York-NY Photos from New York, NY]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Morristown-NJ Photos from Mirristown, NJ]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Chicago-IL Photos from Chicago, IL]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Dallas-TX Photos from Dallas, TX]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Boston-MA Photos from Boston, MA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Northampton-MA Photos from Northampton, MA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Pittsburgh-PA Photos from Pittsburg, PA]

===Canada===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Canada/Toronto Photos from Toronto, Canada]

===United Kingdom===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/London Photos from London, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Belfast Photos from Belfast, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Bristol Photos from Bristol, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Cardiff Photos from Cardiff, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Nottingham Photos from Nottingham, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Oxford Photos from Oxford, UK]

===Europe===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Europe/Oslo-Norway Photos from Oslo, Norway]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Europe/Hamburg-Germany Photos from Hamburg, Germany]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Europe/The-Hague Photos from The Hague, Netherlands]

===Australia===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Australia/Melbourne Photos from Melbourne, Australia]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Australia/Other Photos from Perth, Australia]

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016 in 12 locations all over the world<ref>http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

===Other===
*[https://meaction.smugmug.com/Millions-Missing/Virtual Photos from online virtual protest]

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://facebook.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

==Learn more==

*[https://www.meaction.net/reach/press-coverage/press-coverage-millionsmissing/ Press coverage of Millions Missing events]
*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Fatigatio e.V.

2019-09-01T07:32:22Z

Hannosch:Deleted that it's a "stub"

The '''Fatigatio''' is a [[Germany|German]] patient organization. It was founded in 1993 and is located in Berlin.<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-15}}</ref>
== Aims ==

== Controversy ==
* When an alliance of all German patient groups protested the guideline "tiredness" (which includes a chapter on ME/CFS and recommends [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) in 2011, Fatigatio publicly quit the alliance and opposed its criticism of the guideline.<ref>{{Cite web|url=https://www.fatigatio.de/no_cache/aktuelles/details/artikel/warum-der-fatigatio-ev-seine-eigene-stellungnahme-an-die-degam-sendet/text/javascript/?cHash=17ab1aa613f844da74462550cc154916&sword_list%5B0%5D=leitlinie&sword_list%5B1%5D=m%C3%BCdigkeit|title=Warum der Fatigatio e.V. seine eigene Stellungnahme an... - Fatigatio e.V.|website=www.fatigatio.de|access-date=2019-08-15}}</ref>
* During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman [https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf wrote to the guideline commission] (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, bedridden patients should be activated and made derogatory comments about the "CFS scene".<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> This statement was published in the official guideline report.<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and asked the guideline commission to delete it from the report.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/01_offizielle_entschuldigung_degam.pdf|title=Entschuldigung DEGAM|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> Afterwards Fatigatio published [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf a letter by a lawyer] on its website to threaten critics with legal action<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf|title=Persönlichkeitsrechtsverletzung/ Rechtliche Grundlagen|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> and [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf a letter by a psychiatrist] to defend the remark, that bedridden [[pwME]] should be activated.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf|title=Stellungnahme Prof. Stark|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
* While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German [[Millions Missing protests|#MillionsMissing]] protests 2018<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-08-15}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref>.
* Fatigatio uses the term "Chronisches Erschöpfungssyndrom" (chronic exhaustion syndrome) in its name "Bundesverband Chronisches Erschöpfungssyndrom CFS/CFIDS/ME" (federal alliance chronic exhaustion syndrome).<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-09-01}}</ref> Patients critizise the use of the trivialising and unofficial term "exhaustion syndrome". Also that the Fatigatio uses the terms [[Chronic fatigue syndrome|CFS]] and [[CFS/ME]] instead of [[Myalgic encephalomyelitis|ME]] or [[ME/CFS]] is criticized.
* Media articles with the Fatigatio mostly focus on tiredness, psychological problems, thinking positive and staying active.<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref><ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref> In an article, the then chairwoman proposed as solution to sometimes skip ironing clothes.<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=https://www.merkur.de|language=de|access-date=2019-09-01}}</ref>
* Fatigatio promoted unscientific theories and invited proponents of the [[biopsychosocial model]] to speak at its conferences (e.g. about childhood trauma) or write for the member magazine. Fatigatio also promoted pseudoscientific programs like [[Gupta programme|Gupta]] (it was forbidden to critizise Gupta in the member forum).

== Events ==
Fatigatio organizes a yearly conference.<ref>{{Cite web|url=https://www.fatigatio.de/cfs-me-fachtagung-2019-des-fatigatio-ev/|title=CFS / ME - Fachtagung 2019 des Fatigatio e.V. - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-31}}</ref>

== Interviews and articles ==
* "Mit chronischer Erschöpfung leben"<ref>{{Cite web|url=https://www.merkur.de/leben/gesundheit/dauermuede-mit-chronischer-erschoepfung-leben-zr-6030050.html|title=Mit chronischer Erschöpfung leben|date=2016-01-13|website=https://www.merkur.de|language=de|access-date=2019-08-31}}</ref>
* "Wenn Schlaf keine Erholung bringt"<ref>{{Cite web|url=https://www.t-online.de/-/76808686|title=Wenn Schlaf keine Erholung mehr bringt|website=www.t-online.de|language=de|access-date=2019-09-01}}</ref>
* "Chronisches Erschöpfungssyndrom: Wenn man immer müde ist"<ref>{{Cite web|url=https://www.msn.com/de-de/gesundheit/medizinisch/chronisches-ersch%C3%B6pfungssyndrom-wenn-man-immer-m%C3%BCde-ist/ar-AABduEn|title=Chronisches Erschöpfungssyndrom: Wenn man immer müde ist|website=www.msn.com|access-date=2019-09-01}}</ref>

== Online presence ==
* [https://www.fatigatio.de/ Website]
* [https://www.facebook.com/fatigatio/?ref=br_rs Facebook]
* [https://twitter.com/FatigatioeV Twitter]
* [https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg YouTube]

== See also ==

* [[Deutsche Gesellschaft für ME/CFS]]
* [[Lost Voices Stiftung]]
* [[MillionsMissing Deutschland|#MillionsMissing Deutschland]]

== References ==
{{reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Fatigatio e.V.

2019-08-28T19:59:26Z

Hannosch:Added category

{{stub}}The '''Fatigatio''' is a [[Germany|German]] patient organization. It was founded in 1993 and is located in Berlin.<ref>{{Cite web|url=https://www.fatigatio.de/|title=Bundesverband Chronisches Erschöpfungssyndrom - Fatigatio e.V.|website=www.fatigatio.de|language=de|access-date=2019-08-15}}</ref>
== Aims ==

== Controversy ==
* When all German patient groups united to protest the German guideline "tiredness" (which included a chapter on ME/CFS and recommended [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]) in 2011, Fatigatio publicly opposed them.<ref>{{Cite web|url=https://www.fatigatio.de/no_cache/aktuelles/details/artikel/warum-der-fatigatio-ev-seine-eigene-stellungnahme-an-die-degam-sendet/text/javascript/?cHash=17ab1aa613f844da74462550cc154916&sword_list%5B0%5D=leitlinie&sword_list%5B1%5D=m%C3%BCdigkeit|title=Warum der Fatigatio e.V. seine eigene Stellungnahme an... - Fatigatio e.V.|website=www.fatigatio.de|access-date=2019-08-15}}</ref>
* During the latest revision process of the guideline "tiredness" in 2018, the then Fatigatio chairwoman [https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf wrote to the guideline commission] (see page 94 in the linked guideline report), claiming, among other things, that ME/CFS was rare, bedridden patients should be activated and made derogatory comments about the "CFS scene".<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> This statement was published in the official guideline report.<ref>{{Cite web|url=https://web.archive.org/web/20180207211115/http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002%20Leitlinie%20Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf|title=Wayback Machine|date=2018-02-07|website=web.archive.org|access-date=2019-08-15}}</ref> When members and the patient community criticized it, Fatigatio claimed it was a "private letter" and made the guideline commission delete it from the report.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/01_offizielle_entschuldigung_degam.pdf|title=Entschuldigung DEGAM|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> Afterwards Fatigatio published [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf a letter by a lawyer] on its website to threaten critics with legal action<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/09_Persoenlichkeitsrechtsverletzung_Rechtliche_Grundlagen.pdf|title=Persönlichkeitsrechtsverletzung/ Rechtliche Grundlagen|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref> and [https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf a letter by a psychiatrist] to defend the remark, that bedridden [[pwME]] should be activated.<ref>{{Cite web|url=https://www.fatigatio.de/fileadmin/user_upload/07/01_dokumente/02_prof_stark_stellungnahme.pdf|title=Stellungnahme Prof. Stark|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=}}</ref>
* While all other German patient groups cooperated, Fatigatio was the only organization that didn't participate in the German [[Millions Missing protests|#MillionsMissing]] protests 2018<ref>{{Cite web|url=https://www.millionsmissing.de/2018/07/13/internationaler-me-cfs-tag-am-12-05-2018-millionsmissing/|title=Internationaler ME/CFS Tag am 12.05.2018 – #MillionsMissing|date=2018-05-12|website=#MillionsMissing Deutschland|language=de-DE|access-date=2019-08-15}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-15}}</ref>.

== Events ==

== Interviews and articles ==

== Online presence ==
* [https://www.fatigatio.de/ Website]
* [https://www.facebook.com/fatigatio/?ref=br_rs Facebook]
* [https://twitter.com/FatigatioeV Twitter]

== See also ==

* [[Deutsche Gesellschaft für ME/CFS]]
* [[Lost Voices Stiftung]]
* [[MillionsMissing Deutschland|#MillionsMissing Deutschland]]

== References ==
{{reflist}}

[[Category:Patient groups]]
[[Category:German patient groups]]

Deutsche Gesellschaft für ME/CFS

2019-08-28T19:24:20Z

Hannosch:/* Events */

[[File:DG MECFS Logo.png|thumb|right]]
The '''Deutsche Gesellschaft für ME/CFS''' (German Association for ME/CFS) is a non-profit organization. It was founded in 2016 and is located in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/kontakt/|title=Kontakt|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The German Association is run by dedicated volunteers.

==Aims==
Its goals are rising awareness, educating and to gain medical and social recognition of [[ME/CFS]] in [[Germany]].<ref>{{Cite web|url=https://www.mecfs.de/wir-ueber-uns/|title=Wir über uns|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> The organization works closely together with the university hospital [[Charité Berlin|Charité]] in Berlin, the [[Lost Voices Stiftung|Lost Voices Foundation]] in Hannover and is official partner and supporter of [[MillionsMissing Deutschland|MillionsMissing Germany]]. The German Association publishes monthly updates about international news and scientific studies about ME/CFS.<ref>{{Cite web|url=https://www.mecfs.de/aktuelles/|title=Aktuelles|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Events ==
The German Association organized the German [[Millions Missing protests|#MillionsMissing]] events in 2016<ref>{{Cite web|url=https://www.mecfs.de/millionsmissing/|title=#MillionsMissing|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>, 2017<ref>{{Cite web|url=https://www.mecfs.de/internationaler-mecfs-tag-2017/|title=Internationaler ME/CFS-Tag 2017|date=2017-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-22}}</ref> and partnered with [[MillionsMissing Deutschland|MillionsMissing Germany]] for the protests in 2018<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-news-update-04-18/|title=ME/CFS – News Update 04/18|date=2018-05-20|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> and 2019<ref>{{Cite web|url=https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/|title=Int. ME/CFS-Tag {{!}} #MillionsMissing 2019|date=2019-05-12|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>. It also hosts [[Unrest]] screenings in Germany.<ref>{{Cite web|url=https://www.mecfs.de/unrest/|title=UNREST|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

It organized an ME/CFS conference (accredited for CME) 2019 in Hamburg.<ref>{{Cite web|url=https://www.mecfs.de/me-cfs-forum-2019-hamburg/|title=ME/CFS-Forum 2019 in Hamburg|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref>

== Notable projects ==
The German Association was among the best 25 of 100 projects in the 13th "startsocial" competition for social commitment 2016.<ref>{{Cite web|url=https://startsocial.de/projekte/wettbewerb/2016|title=Projekte 2016 {{!}} startsocial|website=startsocial.de|access-date=2019-08-13}}</ref> It was invited to the Bundeskanzleramt and honored by Federal Chancellor Angela Merkel.<ref>{{Cite web|url=https://www.mecfs.de/auszeichnung-im-bundeskanzleramt/|title=Dt. Ges. für ME/CFS im Bundeskanzleramt ausgezeichnet|date=2017-06-07|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-08-13}}</ref>

The organization successfully lodged a complaint against the methodological shortcomings<ref>{{Cite web|url=https://www.mecfs.de/stellungnahme-leitlinie-muedigkeit/|title=Stellungnahme zur »Leitlinie Müdigkeit«|date=2018-02-01|website=Deutsche Gesellschaft für ME/CFS|access-date=2019-07-21}}</ref> of the German "guideline tiredness" that includes a chapter on ME/CFS. It was able to prevent 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=2019-07-21}}</ref>

==Interviews and articles==
* May 2019, ARD: [https://www.daserste.de/information/politik-weltgeschehen/mittagsmagazin/videos/mit-19-jahren-pflegefall-video-100.html "Mit 19 Jahren Pflegefall"]
* May 2019, Tagesschau: [https://www.tagesschau.de/inland/mecfs-erschoepfungssyndrom-107.html "Fragen und Antworten: Permanent erschöpft – warum?"]
* September 2018, WDR: [https://www1.wdr.de/mediathek/audio/wdr5/quarks/hintergrund/audio-chronische-erschoepfung-keine-eingebildete-krankheit-100.html "CFS: Keine eingebildete Krankheit"]
* June 2018, BR: [https://www.br.de/themen/wissen/chronisches-erschoepfungssyndrom-me-cfs-myalgische-enzephalomyelitis-mecfs-grippe-100.html "Myalgische Enzephalomyelitis: Wenn die Grippe einfach nicht weggeht"]

==Videos==
* May 2019, [https://www.youtube.com/watch?v=zse6IhZ2RSY Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=YTZbcQvPLL4 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* May 2019, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Munich]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Daniel Hattesohl at #MillionsMissing in Berlin]
* May 2018, [https://www.youtube.com/watch?v=1ZoTbCTZ1X0&feature=youtu.be&t=420 Talk by chairman Sebastian Musch at #MillionsMissing in Berlin]
* September 2016, [https://vimeo.com/186291882 #MillionsMissing in Hamburg]

== Photos ==
* June 2019, [https://www.facebook.com/dg.mecfs/posts/586223251785744?__xts__[0]=68.ARC1RskNmU23vlUymgtugrQDLsFj3KERwC57qvZAuBcRwiXs9RLdmglhKyDOtBvNfLRd63V-cjRa1AYiQoDIB0jP5m5fO0RI-XGXGGckXLe9bSN-4ofU3b-dloVxzWVra28J8Xk97i-tCX1tC04iifca0tY8t7G_l5wud7U2mV7f9MAPy5fvo3fSJT-bELmDVsRJbXIWew2AVdYQb6ym2VZOut_laimUl9z6kBz7uIhfi3WxeCepczGmXkdQNwKQCQTiTip4kJeBImFLBYQfxtRf4emQLDILqKjYuJa28ovvhEG47e9CCkAn9Kgfx_9nI-9uBVi2vHTCi_WnHggtC5OYRImaGa58OBhaYe6r8su2zmUVMS23_t9XEgt2ASAiKyA__gQK-8So6Q8WoCoUXh8x92uw2LVOuH_w_eyP&__tn__=-R ME/CFS conference in Hamburg]
* September 2016, [https://www.mecfs.de/millionsmissing/ #MillionsMissing in Hamburg]

==Online presence==
*[http://www.mecfs.de/ Website]
*[https://www.facebook.com/dg.mecfs/ Facebook]
*[https://twitter.com/dg_mecfs Twitter]
*[https://www.instagram.com/dg_mecfs/ Instagram]
*[https://www.mecfs.de/newsletter/ Newsletter]

==See also==
* [[Charité Berlin]]
* [[MillionsMissing Deutschland|MillionsMissing Germany]]
* [[Lost Voices Stiftung|Lost Voices Foundation]]

==References==
<references />

[[Category:Patient groups]]
[[Category:German patient groups]]

File:MillionsMissing Germany.png

2019-08-26T12:55:46Z

Hannosch:

#MillionsMissing protest 2019 in Berlin

Creator: #MillionsMissing Germany

Source: https://www.millionsmissing.de/

License: CC-BY-ND-4.0

<nowiki>#</nowiki>MillionsMissing Germany created this and anyone can copy it but don't alter it and credit #MillionsMissing Germany as the author.{{CC-by-nd-4.0}}