#me-cfs — Public Fediverse posts

Thanks to my mum for getting everything ready for our family
#TeaPartyForME2026 on #BlueSunday2026 (on Sunday).

We’re doing it in aid of the Irish ME/CFS Association @IrishMECFSAssociation
https://www.idonate.ie/fundraiser/BlueSunday2026fortheIrishMECFSAssociation
but other worthy charities are available (see:
https://the-slow-lane.com/donation-pages )

#MEcfs #CFS #PwME #BlueSunday @mecfs

Juchuuuuu!

Das es jetzt so schnell geht, damit hab ich nicht gerechnet. 😯

Pflegebegutachtung/Pflegegrad

https://maintz.org/pflegebegutachtungpflegegrad

#MECFS #PostCovid #Pflegebegutachtung #MDK #Pflegegrad #MedizinischerDiensDerKrankenkassen

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

Hope to see some of you at the Dublin meeting tomorrow. I don’t have the energy for the whole event so I will lie in the back of our car till part way through the Q&A section to be around for chat section. Do come over and say hello if you are there. 👋
#MEcfs #PwME @mecfs

15/

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

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

Day 15

#MyalgicE #MyalgicEncephalomyelitis
#mecfs
@mecfs

15/

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

You can help by sharing and/or liking this 7-minute video, "What is ME? (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome CFS)" by Broken Battery

https://www.youtube.com/watch?v=VKPdgz612nU

Day 15

#MEcfs #PwME

@mecfs

After going waaaayy over my pacing threshold last weekend by just making some coleslaw (the surprises that #MECFS throws at you 🤦...), I am taking it easy this weekend. Some more #sewing lined up if my energy is ok tomorrow, and some light code tinkering. I have also accomplished some minor digital administrivia that had been sitting around for a couple of weeks.

“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

"Breaking the vicious cycle: How two German scientists seek to solve #ME" #MECFS - my latest article has just been published by @thesicktimes https://thesicktimes.org/2026/05/14/breaking-the-vicious-cycle-how-two-german-scientists-seek-to-solve-me/

Wer hat Erfahrungen mit #MECFS und schwerem Crash nach einer OP? Wie lange habt ihr oder Bekannte/Verwandte gebraucht, bis es ihnen besser ging?

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/

(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

10.000 Unterschriften sind geschafft!

Petition der ÖG ME/CFS:
https://www.openpetition.eu/at/petition/online/pais-aktionsplan-ohne-betroffene-diese-mindestanforderungen-muessen-im-aktionsplan-verankert-werden

#MECFS #LongCovid

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

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

Gestern, am 12. Mai, haben wir, #DieLinke im Main-Tauber-Kreis, aus Solidarität zu einem Mitglied das obere Tor in Lauda in Lauda blau beleuchtet, Infomaterial verteilt und damit auf ME/CFS aufmerksam gemacht.
#mecfs #12mai #LightUpTheNight4ME
https://lightupthenight4me.wixsite.com/website

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