Eva Maria Wohlfarter · @stadtstreunen_at
295 followers · 1987 posts · Server urbanists.social"Ähnlich wie Long Covid ist ME/CFS eine Erkrankung, die u. a. durch große Müdigkeit gekennzeichnet ist."
Große Müdigkeit?? Ich schreie gleich! (Später im Artikel wird dann eh differenziert, aber.)
#MECFS #MillionsMissing
https://science.orf.at/stories/3221149
Tom Kindlon · @tomkindlon
778 followers · 2084 posts · Server disabled.socialMedically Documenting Disability in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS) Cases (2019)
Coauthored by the lawyer who prevailed on the disability case of @brianvastag disability case and a clinician who has done many ME/CFS disability cases
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyE #ME #millionsmissing #CFSME #CFIDS
Probably of use to some with #LongCovid @longcovid
#PwLC #PostCovidSyndrome #LC #postcovid
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #mye #me #millionsmissing #cfsme #cfids #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid
Tom Kindlon · @tomkindlon
778 followers · 2083 posts · Server disabled.social“What Does It Mean to Really, Truly Rest?” (December 2022)
https://www.self.com/story/what-does-rest-mean
#spoonie @spoonies #chronicillness @chronicillness #fatigue #fatiguetips #chronicfatigue #chronicfatiguesucks #pacing #rest #resting @mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid
#spoonie #chronicillness #fatigue #fatiguetips #chronicfatigue #chronicfatiguesucks #pacing #rest #resting #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid
Tom Kindlon · @tomkindlon
777 followers · 2063 posts · Server disabled.socialCanada - Quebec INESSS, the body in charge of medical guidelines and recommendations, published a set of documents in April 2023 for the clinical management of ME/CFS. There are three surveys (in French) asking for feedback on the three main documents.
#sfc #Syndromedefatiguechronique #encephalomyelitemyalgique #em @mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
#sfc #syndromedefatiguechronique #encephalomyelitemyalgique #em #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #cfids
ahimsa · @ahimsa_pdx
920 followers · 9690 posts · Server disabled.social"We can share our stories, celebrate #MillionsMissing and brainstorm how to share our stories beyond our community. The event will be recorded.
We would love to add short captions to the pillowcases to tell more of your story! Instructions below."
5/n
#millionsmissing #mecfs #LongCovid
ahimsa · @ahimsa_pdx
920 followers · 9686 posts · Server disabled.social
From #MEAction
"Since the beginning of #MillionsMissing, we have emphasized that your story matters. A story can change the world. An image can speak to our souls. Our collective action can effect change. #MillionsMissing is our drumbeat for telling those stories"
1/n
#meaction #millionsmissing #mecfs #pwme #LongCovid #pwlc
Tom Kindlon · @tomkindlon
774 followers · 2029 posts · Server disabled.socialFrom: Bateman Horne Center
@BatemanHorne
Introducing video 6 of the Post-Exertional Malaise series, Neurobiological Changes
👉 View the entire PEM video series: http://bit.ly/3s4a3us
#PEM #PESE #MERC #MedicalEducation #MillionsMissing @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
#PEM #pese #merc #medicaleducation #millionsmissing #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
Tom Kindlon · @tomkindlon
773 followers · 2007 posts · Server disabled.social12/
“Other viruses, such as Epstein-Barr virus (#EBV), are also thought to trigger ME/CFS, although the mechanisms are equally complex.
Like other human herpes viruses, EBV can hide out in the body, evading the immune system for years until stress or some other illness reactivates the virus.”
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME
#EBV #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #cfids #seid #NeuroME
Tom Kindlon · @tomkindlon
765 followers · 1993 posts · Server disabled.social8/
“What's more, by the time a person develops ME/CFS and receives a formal diagnosis (if they do), they or their treating doctor might not make the connection between their illness and a previous viral infection.”
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #cfids #seid #NeuroME
Tom Kindlon · @tomkindlon
756 followers · 1951 posts · Server disabled.socialME Research UK
#DecodeME is the largest ME/CFS study in the world & is ongoing but a paper has recently been published reporting initial findings from the questionnaire relating to the characteristics of the people who have taken part so far.
Read more here:
https://www.meresearch.org.uk/initial-findings-from-the-decodeme-questionnaire
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing
#decodeme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #me #mye #millionsmissing
Tom Kindlon · @tomkindlon
756 followers · 1950 posts · Server disabled.socialBateman Horne Center
In Video 5 of the post-exertional malaise [PEM] series, a study investigating the relationship between a resting state and post-exercise induced PEM shows significant increases in post-exercise ME/CFS brain activity, directly correlated with the number & magnitude of patient reported
https://www.youtube.com/watch?v=nn5W_XaIsUY
#PEM #PESE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #MERC #MedicalEducation #MillionsMissing #LongCOVID @mecfs
#PEM #pese #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #merc #medicaleducation #millionsmissing #LongCovid
Eva Maria Wohlfarter · @stadtstreunen_at
279 followers · 1818 posts · Server urbanists.socialWow, die Ausstellung "Crash!" im Künstlerhaus war so arg und aufrüttelnd und inspirierend! Schaut sie euch an, wenn ihr in Wien seid - sie läuft noch bis Sonntag: https://www.kuenstlerhaus.at/besuch/kalender/ausstellung/445/crash.html
#Crash #MECFS #MillionsMissing
Danke @unicornwanted für die liebe Begleitung 🌈
#crash #mecfs #millionsmissing
Tom Kindlon · @tomkindlon
708 followers · 1783 posts · Server disabled.social2/
“Following chronic fatigue mechanisms to the source: WASF3 & mitochondrial respiration”
https://medicalxpress.com/news/2023-08-chronic-fatigue-mechanisms-source-wasf3.html
Possibly based on a press release, this explains, step by step, what these researchers did. A lot of terms are new to me but I understand the logic
@mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroM
#cfs #myalgice #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #mye #me #millionsmissing #cfsme #cfids #seid #neurom #mecfs
Tom Kindlon · @tomkindlon
708 followers · 1780 posts · Server disabled.social
Martine McCutcheon was on BBC Radio 4’s Woman Hour on Wednesday and there was some discussion of ME/CFS. See someone commenting on it in image or listen at https://www.bbc.co.uk/sounds/play/m001pmkp
@mecfs
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #ME #millionsmissing #CFSME
#mecfs #cfs #myalgice #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #mye #me #millionsmissing #cfsme
Irish ME/CFS Association · @IrishMECFSAssociation
178 followers · 1548 posts · Server mastodon.ie
New
“I have had #severeME for 26 years”
“The frustrating thing about sometimes having 30% capacity is that I can do so much more from well-rested but it is an illusion, which masks my true capacities. They are always much lower than I think”
https://meassociation.org.uk/2023/08/severe-me-week-2023-mikes-story/
@severeme @mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #ME #millionsmissing #CFSME
#severeme #mecfs #cfs #myalgice #myalgicencephalomyelitis #ChronicFatigueSyndrome #pwme #mye #me #millionsmissing #cfsme
Tom Kindlon · @tomkindlon
699 followers · 1683 posts · Server disabled.social2/
“(Contd) And for years I also found it hard to accept and understand her illness. I wanted her to try exercise programmes (then recommended as a treatment) and wondered what trauma had caused her condition. For too long I believed the medical orthodoxy, and that strained our family bond.“
@mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME
#mecfs #cfs #myalgice #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #mye #me #millionsmissing #cfsme #cfids #seid #NeuroME
Karin Kelle-Herfurth · @DrKelleHerfurth
309 followers · 204 posts · Server medibubble.org
Weckruf zum 8. August: Der #SevereMEDay zeigt die stille Katastrophe von #MECFS.
Ein Viertel der Betroffenen ist schwer oder schwerst betroffen, ein Großteil unversorgt, sozial isoliert zu Hause oder bettlägerig, abgeschnitten von der Außenwelt und jeder Form eines „normalen“ Lebens.
Trotz der Zunahme durch #COVID19 fehlt es an Aufklärung und Forschung. Es ist mehr als eine medizinische Herausforderung.
#Millionsmissing #LostVoicesStiftung #pwME #LongCOVID #PostCOVID
#severemeday #mecfs #COVID19 #millionsmissing #lostvoicesstiftung #pwme #LongCovid #PostCovid
Moby MicroDick · @Moby_MicroDick
107 followers · 145 posts · Server piaille.frPar un concours de circonstances risible on en vient à m'évoquer cette baraque ultra bourges' : https://www.bellesdemeures.com/annonces/location/tt-1-tb-2-pl-30127/205375329/. Eh bien en voyant la véranda ombragée, je pense immédiatement être avec les potes #pwEM allongé-es dans ce calme. @satchaem@bird.makeup @CyruxiME @thechronicchloe @ChiaraChiarel 🍹
#MillionsMissing
#EncéphaloMyalitemyalgique #MyalgicEncephalomyelitis
#pwem #millionsmissing #encephalomyalitemyalgique #MyalgicEncephalomyelitis
gretebrug · @gretebrug
116 followers · 997 posts · Server norden.social@SteineundBasalt
Es wäre einfacher, wenn wir nicht das Scheitern in der vergeblichen Suche nach Unterstützung vor Augen hätten. Ich hatte vor einigen Jahren eine Krebstherapie. Jeder Arzt, jede soziale Institution hat die Erkrankung akzeptiert. Der Unterschied ist schon krass, denn bei #mecfs müssen wir für die Akzeptanz nicht nur bei uns, sondern auch im Umfeld kämpfen.
Der Wunsch z B nach einer SchönheitsOP wird mehr respektiert, als dass man #MillionsMissing Versorgung zugesteht.
Millions Missing France · @MillionsMissingFrance
40 followers · 7 posts · Server med-mastodon.com
L’encéphalomyélite myalgique, "cette maladie aux 'millions d’oubliés'" et "aux répercussions terribles pour le quotidien".
Les explications de @chantalsomm, fondatrice de notre association.
🙏 Merci à Philippe Frieh pour son écoute.
📷 Nathalie Paton - Marseille, 7/11/2021
#MECFS #Pwme #encéphalomyalitemyalgique #EM #millionsmissing
https://ma-sante.news/fatigue-et-si-cetait-lencephalomyelite-myalgique.html
#mecfs #pwme #encephalomyalitemyalgique #em #millionsmissing