#mecfs — Public Fediverse posts

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans https://www.preprints.org/frontend/manuscript/88899e80acc1ba7321d728e194e2099b/download_pub?fbclid=IwZnRzaARzBQ5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEelMia1M169yC7F9WBCL4ZHz27KoAApa4WvoQlbmoenK-wunVny4sgJ9hPaDg_aem_wRRfIVF2u5A4qJe7DE1qAw

💔 Dok-Film von und mit einer ME/CFS-Betroffenen. Ein wichtiger und darüber hinaus wirklich sehr gut gemachter Film.
Im Moment für 5 € Euro online zu sehen:
https://www.dokfest-muenchen.de/films/hello-new-body-how-are-you-today

#DOKfest #Dokumentarfilm #Doku #MECFS #PAIS #LongCovid #PostVac

We got this request this morning from the Limerick Today show on Live 95 FM:
--
"Ahead of the Limerick event next week, would you have a Limerick resident who suffers from ME and would be willing to chat about it on our show?  I'm looking at next Tuesday morning?"
--
Please get in touch if you think you would be available. It would be a terrible shame if the opportunity to raise awareness and understanding was missed.

#MEcfs #PwME @mecfs

14/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #14

#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs @invest_in_me_research

14/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #14

#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs @invest_in_me_research

14/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #14

#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs @invest_in_me_research

14/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #14

#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs @invest_in_me_research

14/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #14

#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs @invest_in_me_research

14/

(2 minutes)
"How does it feel to live with ME/CFS? Patients describe what it's like"

May is ME Awareness Month.
You can help raise awareness and understanding by sharing and/or
liking this video

https://www.youtube.com/watch?v=1kEBGfQ1DhM

Day 14
#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs

14/

(2 minutes)
"How does it feel to live with ME/CFS? Patients describe what it's like"

May is ME Awareness Month.
You can help raise awareness and understanding by sharing and/or
liking this video

https://www.youtube.com/watch?v=1kEBGfQ1DhM

Day 14
#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs

14/

(2 minutes)
"How does it feel to live with ME/CFS? Patients describe what it's like"

May is ME Awareness Month.
You can help raise awareness and understanding by sharing and/or
liking this video

https://www.youtube.com/watch?v=1kEBGfQ1DhM

Day 14
#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs

14/

(2 minutes)
"How does it feel to live with ME/CFS? Patients describe what it's like"

May is ME Awareness Month.
You can help raise awareness and understanding by sharing and/or
liking this video

https://www.youtube.com/watch?v=1kEBGfQ1DhM

Day 14
#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs

14/

(2 minutes)
"How does it feel to live with ME/CFS? Patients describe what it's like"

May is ME Awareness Month.
You can help raise awareness and understanding by sharing and/or
liking this video

https://www.youtube.com/watch?v=1kEBGfQ1DhM

Day 14
#MyalgicE #MyalgicEncephalomyelitis
#mecfs @mecfs

RE: https://mastodon.ie/@IrishMECFSAssociation/116054466731120376

2 days to go to start of tour.
#PwME #MEcfs #CFS #Ireland #mastodaoine @mecfs

RE: https://mastodon.ie/@IrishMECFSAssociation/116054466731120376

2 days to go to start of tour.
#PwME #MEcfs #CFS #Ireland #mastodaoine @mecfs

RE: https://mastodon.ie/@IrishMECFSAssociation/116054466731120376

2 days to go to start of tour.
#PwME #MEcfs #CFS #Ireland #mastodaoine @mecfs

RE: https://mastodon.ie/@IrishMECFSAssociation/116054466731120376

2 days to go to start of tour.
#PwME #MEcfs #CFS #Ireland #mastodaoine @mecfs

RE: https://mastodon.ie/@IrishMECFSAssociation/116054466731120376

2 days to go to start of tour.
#PwME #MEcfs #CFS #Ireland #mastodaoine @mecfs

Free webinar on June 10:

https://solvecfs.org/event/sequence-me-long-covid-the-search-for-me-cfs-and-long-covid-biomarkers-and-subtypes/

"… host Dr. Jessica Maya will talk to the DecodeME management team and recent Catalyst Award honorees Prof. Chris Ponting, Sonya Chowdhury, and Andy Devereux-Cooke about how their study could reveal many more genes, gene-regulation elements, and biological pathways that affect ME/CFS risk, advance efforts to identify new biomarkers for disease subtypes, and ultimately lead to new treatments."

@mecfs @longcovid

#DecodeME #SequenceME #MEcfs

Yesterday, as part of a long thread on ME/CFS Awareness Day, I posted that the SequenceME research project had gotten partial funding.

"Major funding secured for Sequence ME & Long Covid, a DecodeMe project"

https://www.actionforme.org.uk/major-funding-secured-for-sequence-me-long-covid-a-decodeme-project/

This is good news! 🎉 More funding is still needed, but this is a good start.

I'm re-posting today because it was buried in my long thread & may have been missed by a lot of folks.

@mecfs @longcovid

#MEcfs #LongCovid #Genomics #SequenceME #DecodeME #MedMastodon

Ein weiterer Film auf dem #DOKfest #München beschäftigt sich mit #MECFS - sein Titel:
"HELLO NEW BODY, HOW ARE YOU TODAY?"
Dieser 30-minütige Dokumentarfilm ist am morgigen Donnerstag in #München zu sehen (anwesend auch Regisseurin Laura Kansy):
https://www.dokfest-muenchen.de/films/hello-new-body-how-are-you-today
2/

"FIRST LAP CRASH" heißt ein Film über das Leben einer jungen Frau mit #MECFS, den ihr Bruder Liam Erlach als Abschlussarbeit seines Filmhochschulstudiums gedreht hat.
Beim @dokfest ist er am Freitag in #München zu sehen, außerdem auch online gestreamed:
https://www.dokfest-muenchen.de/films/first-lap-crash
1/

Great to see this eletter in the Canadian Family Physician journal

"Exercise May Cause Harm in a Subset of Fibromyalgia Patients"

https://www.cfp.ca/content/exercise-may-cause-harm-subset-fibromyalgia-patients

[I have not included the full text in the screenshot]

#Fibromyalgia #MEcfs #PwME @mecfs

We would welcome nominations to help win 1 of 10 prizes of £5000 for health charities.

People can nominate us here (you don't have to say anything about us):
https://movementforgood.com/draws/special/health-wellbeing?cn=20100254&ct=health&i=1778690748-28746.jpg&utm_source=holiday+card&utm_medium=social&utm_campaign=M4G2025card&utm_id=M4G2025card#nominateACharity

You can vote for more than one charity.

Cheers

#MEcfs #PwME @mecfs

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

The upcoming 5 Dr Amolak Bansal events involve a lot of resources (both money & time/energy) so we are spending some money on advertising.

Here is one ad going in the Cork Independent.

Note: Typo. The speaker's name is Dr Amolak Bansal

https://irishmecfs.org/blog/may-2026-5-free-talks-by-uk-expert-consultant-dr-amolak-bansal-in-corkdublingalwaylimericksligo-followed-by-free-teacoffee-biscuits

#MEcfs #PwME #CFS #mastodaoine @mecfs

The upcoming 5 Dr Amolak Bansal events involve a lot of resources (both money & time/energy) so we are spending some money on advertising.

Here is one ad going in the Cork Independent.

Note: Typo. The speaker's name is Dr Amolak Bansal

https://irishmecfs.org/blog/may-2026-5-free-talks-by-uk-expert-consultant-dr-amolak-bansal-in-corkdublingalwaylimericksligo-followed-by-free-teacoffee-biscuits

#MEcfs #PwME #CFS #mastodaoine @mecfs

The upcoming 5 Dr Amolak Bansal events involve a lot of resources (both money & time/energy) so we are spending some money on advertising.

Here is one ad going in the Cork Independent.

Note: Typo. The speaker's name is Dr Amolak Bansal

https://irishmecfs.org/blog/may-2026-5-free-talks-by-uk-expert-consultant-dr-amolak-bansal-in-corkdublingalwaylimericksligo-followed-by-free-teacoffee-biscuits

#MEcfs #PwME #CFS #mastodaoine @mecfs

The upcoming 5 Dr Amolak Bansal events involve a lot of resources (both money & time/energy) so we are spending some money on advertising.

Here is one ad going in the Cork Independent.

Note: Typo. The speaker's name is Dr Amolak Bansal

https://irishmecfs.org/blog/may-2026-5-free-talks-by-uk-expert-consultant-dr-amolak-bansal-in-corkdublingalwaylimericksligo-followed-by-free-teacoffee-biscuits

#MEcfs #PwME #CFS #mastodaoine @mecfs

The upcoming 5 Dr Amolak Bansal events involve a lot of resources (both money & time/energy) so we are spending some money on advertising.

Here is one ad going in the Cork Independent.

Note: Typo. The speaker's name is Dr Amolak Bansal

https://irishmecfs.org/blog/may-2026-5-free-talks-by-uk-expert-consultant-dr-amolak-bansal-in-corkdublingalwaylimericksligo-followed-by-free-teacoffee-biscuits

#MEcfs #PwME #CFS #mastodaoine @mecfs

Am 12. Mai machte der Internationale ME/CFS-Tag auf die schwere neuroimmunologische Erkrankung #MECFS aufmerksam.

Die Forschung untersucht Störungen im #Immunsystem, #Energiestoffwechsel und mögliche #Autoimmunprozesse.

Viele Betroffene leiden unter #Belastungsintoleranz und massiver #Fatigue. Trotz neuer Ansätze fehlen weiterhin verlässliche Biomarker und zugelassene Therapien.

https://www.swr.de/swrkultur/wissen/internationaler-mecfs-tag-was-hat-sich-in-der-forschung-getan-100.html

#Gesundheit #Forschung #healthcare #Corona

13/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image.

Day 13

#MyalgicEncephalomyelitis #MyalgicE
#mecfs @mecfs

13/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image.

Day 13

#MyalgicEncephalomyelitis #MyalgicE
#mecfs @mecfs

13/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image.

Day 13

#MyalgicEncephalomyelitis #MyalgicE
#mecfs @mecfs

13/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image.

Day 13

#MyalgicEncephalomyelitis #MyalgicE
#mecfs @mecfs

13/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image.

Day 13

#MyalgicEncephalomyelitis #MyalgicE
#mecfs @mecfs

Gestern war ein total schöner Tag erstes Tanzvideo erstellt Aussieht auf Praktikumsplatz im inklusiven Theater bekommen
Und heute geht gar nichts Schmerzen Licht und Berührungsempfindlich musste Physio absagen und Intersex Meetup geht auch nicht
Ich hasse meine Krankheit
#mecfs #chronischkrank

Gestern war ein total schöner Tag erstes Tanzvideo erstellt Aussieht auf Praktikumsplatz im inklusiven Theater bekommen
Und heute geht gar nichts Schmerzen Licht und Berührungsempfindlich musste Physio absagen und Intersex Meetup geht auch nicht
Ich hasse meine Krankheit
#mecfs #chronischkrank

☔ Gestern haben wir uns trotz Regen und frischer 8 °C nicht aufhalten lassen: Gemeinsam setzen wir uns für mehr Sichtbarkeit, bessere Versorgung und mehr Forschung zu Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom ein. #MECFS #MyalgischeEnzephalomyelitis #ChronischesFatigueSyndrom #TagDerPflege #Solidarität #Inklusion #MEAwarenessDay

☔ Gestern haben wir uns trotz Regen und frischer 8 °C nicht aufhalten lassen: Gemeinsam setzen wir uns für mehr Sichtbarkeit, bessere Versorgung und mehr Forschung zu Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom ein. #MECFS #MyalgischeEnzephalomyelitis #ChronischesFatigueSyndrom #TagDerPflege #Solidarität #Inklusion #MEAwarenessDay

☔ Gestern haben wir uns trotz Regen und frischer 8 °C nicht aufhalten lassen: Gemeinsam setzen wir uns für mehr Sichtbarkeit, bessere Versorgung und mehr Forschung zu Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom ein. #MECFS #MyalgischeEnzephalomyelitis #ChronischesFatigueSyndrom #TagDerPflege #Solidarität #Inklusion #MEAwarenessDay

☔ Gestern haben wir uns trotz Regen und frischer 8 °C nicht aufhalten lassen: Gemeinsam setzen wir uns für mehr Sichtbarkeit, bessere Versorgung und mehr Forschung zu Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom ein. #MECFS #MyalgischeEnzephalomyelitis #ChronischesFatigueSyndrom #TagDerPflege #Solidarität #Inklusion #MEAwarenessDay

☔ Gestern haben wir uns trotz Regen und frischer 8 °C nicht aufhalten lassen: Gemeinsam setzen wir uns für mehr Sichtbarkeit, bessere Versorgung und mehr Forschung zu Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom ein. #MECFS #MyalgischeEnzephalomyelitis #ChronischesFatigueSyndrom #TagDerPflege #Solidarität #Inklusion #MEAwarenessDay

In der WDR Lokalzeit aus Düsseldorf wurde gestern ein Beitrag über ME/CFS gesendet. Sie haben eine Selbsthilfegruppe besucht und mit Betroffenen gesprochen.

Da die Anmoderation auch sehr empathisch und sehenswert ist, ab 12:15 in der Mediathek.

https://www.ardmediathek.de/video/lokalzeit-aus-duesseldorf/wdr-lokalzeit-aus-duesseldorf-oder-12-05-2026/wdr-duesseldorf/Y3JpZDovL3dkci5kZS9CZWl0cmFnLXNvcGhvcmEtNWQ3ZGEzOTktYmE5OS00ZTkxLTk3YWMtMDZjNWE5NDA3NmZl

#MECFS #LongCovid #Corona

For ME/CFS AwarenessDay I posted a long thread on Mastodon - here's the link! 😁 disabled.social/@ahimsa_pdx/... If you prefer an "unrolled" thread here's that link: mastoreader.io?url=https%3A... #MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

Ahimsa (@[email protected]...

For ME/CFS AwarenessDay I posted a long thread on Mastodon - here's the link! 😁 disabled.social/@ahimsa_pdx/... If you prefer an "unrolled" thread here's that link: mastoreader.io?url=https%3A... #MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

Ahimsa (@[email protected]...