#mecfs_de — Public Fediverse posts

WE&ME press conference for petition supporting the PAIS Action Plan by Österreichische Gesellschaft für MECFS brought together patients, experts, advocates, & 4 former Austrian health ministers, all calling for its implementation.

https://www.weandmecfs.org/me-cfs-in-austria-four-former-health-ministers-support-a-petition-calling-for-the-concerns-of-those-affected-to-be-addressed-in-the-national-pais-action-plan/

https://orf.at/stories/3433691/

@mecfs #mecfs #mecfs_de

From @s4me weekly update:

The Swiss-German state broadcaster has published a good article on ME/CFS. It explains the troubles ME/CFS patients face with disability insurance procedures and how these often have a negative impact on their health.

Google translation:
https://www-srf-ch.translate.goog/news/gesellschaft/chronische-erkrankung-me-cfs-schwerkrank-und-das-iv-verfahren-eine-zumutung?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

@mecfs #mecfs #mecfs_de

Daten & Fakten — Deutsche Gesellschaft für ME/CFS https://www.mecfs.de/daten-fakten/ #mecfs_de

2/
Article on it in English:
‘BRIGITTE’ SPECIAL EDITION – MECFS

https://chroniclivingtherapy.com/brigitte-special-edition/

@mecfs #mecfs #mecfs_de

2/
From X:
"ich habe diese Pflegehinweise für Personen mit PEM -Post Exertional Malaise mal ins Deutsche übersetzen lassen – falls es jemand benötigt.
(Ich weiß leider den Urheber nicht, füge Tassen hinzu sobald ich es herausfinde)"

@mecfs @longcovid
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs_de #LongCovid #PASC #PwLC #postcovid #postcovid19

German public radio station Deutschlandfunk has published a 3700-word article & radio piece on how #MECFS & #LongCovid impact life & autonomy. Article is titled: "Die Grenzen der Autonomie Wie Post-Covid & ME/CFS das Leben verändern”

Google translation
https://www-deutschlandfunk-de.translate.goog/wie-postcovid-und-me-cfs-das-leben-veraendern-100.html?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

@mecfs @longcovid #mecfs_de

"an expert discussion took place in the German Bundestag on the national decade against post-infectious disease."

Video
https://www.bundestag.de/ausschuesse/forschung/sitzungen/1131968-1131968

Google English translation of summary
https://www-fatigatio-de.translate.goog/aktuelles/detail/zusammenfassung-des-fachgespraechs-zur-nationalen-dekade-gegen-postinfektioese-erkrankungen-im-bundestag%C2%A0?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #mecfs_de

63 Milliarden Kosten für ME/CFS und Long Covid. Medizinische Forschung ist noch sehr am Anfang und die Krankheit noch nicht so bekannt, selbst bei Ärzten. Spannender Beitrag des SWR: https://www.swr.de/swrkultur/wissen/die-teure-epidemie-wie-long-covid-und-me-cfs-die-gesellschaft-belasten-das-wissen-2025-11-11-102.html
#mecfs #mecfs_de #nataliegrams
#carmenscheibenbogen #forschung #forschungsgelder #finanzierung #lauterbach #staatsversagen
@[email protected]

Für alle, die eine kleine gute Tat machen wollen: Gebt Eurem Hausarzt möglichst zeitnah den Hinweis auf die medizinische Fortbildung zum Thema ME/CFS ("chronische Erschöpfung") der Charite Berlin (online durchführbar von der Praxis), die ich als .pdf Datei angehängt habe.
Außerdem habe ich Sie auf unserer privaten Homepage als Download verlinkt: https://www.familie-zwoelfer.de/mecfs-fortbildung

@[email protected]
Danke!
#MECFS #mecfs_de
#guteTat
#ally
#Fortbildung
#Charie
#Arzt
#Hausarzt
#medizin

The Deutsche Gesellschaft für ME/CFS & Charité Fatigue Center have developed a clinical practice guide for ME/CFS and Long COVID

https://www.mecfs.de/informationen-fuer-aerztinnen-und-aerzte/onlinefortbildung/

Google translation
https://www-mecfs-de.translate.goog/informationen-fuer-aerztinnen-und-aerzte/onlinefortbildung/?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Screenshot from latest Science for ME weekly update

@mecfs #MEcfs_de
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

The rollout of Austria's national action plan for post-acute infection syndromes (PAIS), including ME/CFS, faces further delays.

Google translation
https://www-news-at.translate.goog/technik/verzogerung-bei-versorgungsplan-zu-mecfs-post-covid-co?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp&_x_tr_hist=true

Screenshot from latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #mecfs_de

@tinoeberl zeichne ich natürlich mit und hoffentlich viele Andere auch.

Jedoch, falls es Gehör und Umsetzung findet, was dann? Auch unter den Experten fürs Gericht, auf die sich ein Richter stützen muss, finden sich Doktors die genau das tun. :-((
Aber es ist immerhin ein Anfang...

#mecfs #pwme #pwmecfs #mecfs_de

4/‬
‪“More than 300,000 people in Switzerland are affected by Long Covid. This number is set to rise further in the years ahead, with Covid-19 still in circulation. The strategy should also cover chronic fatigue syndrome and post-vaccination complications”‬
‪#PASC #CFS‬ #LongCovid #MEcfs #mecfs_de
@mecfs @longcovid

The recordings of the 2025 scientific conference organised by Fatigatio @FatigatioeV are now available on YouTube.

https://www.youtube.com/@fatigatioev

#mecfs #cfs @mecfs #mecfs_de

Google Translation of:
“Statement from the German Society for ME/CFS
on the statement of the German Society of Neurology of 22 July 2025”

https://www-mecfs-de.translate.goog/statement-zur-stellungnahme-der-dgn/?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

#MEcfs #CFS @mecfs @mecfs_de #mecfs_de

Videos of the conference "ME/CFS Symposium 2025 – Research and Health Care Studies in Germany“ are now available online

https://events.mecfs-research.org/en/events/symposium_2025/videos

Image is from Science for ME weekly update

#mecfs_de @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Press release:

"In just one year, #LongCOVID & #MyalgicEncephalomyelitis/ #ChronicFatigueSyndrome (#MECFS) cost the German economy €63.1 billion
(AU$111 billion), or about 1.5 per cent GDP"

https://www.adelaide.edu.au/newsroom/news/list/2025/06/02/counting-the-cost-of-long-covid-and-me/cfs

Link to report:
https://mecfs-research.org/wp-content/uploads/2025/05/The-rising-cost-of-Long-COVID-and-MECFS-in-Germany.pdf

@mecfs
@longcovid
#LongCovid #PASC #postcovid
#CovidBrain
@covid19 #COVID19 #COVID #SARSCoV2 @[email protected] #novid @[email protected] #auscovid19 @auscovid19
#CFS #PwME #mecfs_de @mecfs_de

@ErnasKind #mecfs #mecfs_de @d_zwoelfer

German Medscape had an article on ME/CFS titled:"ME/CFS: Why are there still no evidence-based therapies? Scientists struggle for research funding." It includes interviews with Prof Scheibenbogen & Prof Wirth

https://deutsch.medscape.com/artikelansicht/4914555?form=fpf

Automatic translation
https://www.s4me.info/threads/news-from-germany.11006/page-19#post-577362

#mecfs @mecfs #mecfs_de @mecfs_de

2/
New from Germany:

Effect of Immunoadsorption on clinical presentation and immune alterations in COVID-19–induced and/or aggravated ME/CFS

https://www.sciencedirect.com/science/article/pii/S1525001625000115

#PASC #PwME @mecfs #mecfs @longcovid #longcovid #mecfs_de @mecfs_de

News from Germany
https://www.wissenschaft.de/bdwplus/die-schattenpandemie/
&
https://www.wissenschaft.de/gesundheit-medizin/den-muskeln-fehlt-der-sauerstoff/

Image is from Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#PEM @mecfs_de #mecfs_de

News Release 17-Dec-2024

"EBViously, a spin-off of Helmholtz Munich, officially started operations on 11 November 2024. The company is developing a preventive vaccine against diseases caused by the Epstein-Barr virus (EBV)."

https://www.eurekalert.org/news-releases/1068503

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @mecfs_de #mecfs_de #multiplesclerosis @multiplesclerosis

New from Germany:

Efficacy of repeated immunoadsorption in patients with #postCOVID #MyalgicEncephalomyelitis #ChronicFatigueSyndrome & elevated β2-adrenergic receptor autoantibodies: a prospective cohort study

https://www.sciencedirect.com/science/article/pii/S2666776224003302

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#MEcfs #CFS #PwME @mecfs @mecfs_de #mecfs_de

Austrian National Television has made a documentary in German titled "Much Suffering, Little Help - The Illness of ME/CFS"

https://on.orf.at/video/14253831/15772190/dok-1-viel-leid-wenig-hilfe-die-krankheit-mecfs-dok-1-viel-leid-wenig-hilfe-die-krankheit-mecfs

#MEcfs #CFS #PwME #MEcfs_de @mecfs_de

Switzerland:

SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%.

Google translation:
https://www-srf-ch.translate.goog/sendungen/kassensturz-espresso/kassensturz/long-covid-und-me-cfs-falsche-behandlungen-in-reha-kliniken?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

#MEcfs #CFS #PwME #LongCovid #PASC #PwLC @mecfs @longcovid #mecfs_de @mecfs_de