#me-cfs — Public Fediverse posts

Great News!:

The Danish short Best Practice has been selected for the OFF-Odense Film Festival and the Friss Hús Budapest International Short Film Festival.

According to director Martin Strange-Hansen it’s “a short film touching on M.E. #MyalgicEncephalomyelitis and the grey line between being a professional or a human on your job.”

https://vimeo.com/1129923232
#MeCfs #off26 #FrissHús #dkfilm

#MECFS ist, wenn Betroffene bei einem Verdacht auf Thrombose nicht zum Arzt oder ins Krankenhaus gehen und darauf hoffen, dass es von selbst besser wird.
Weil sie keinen Hausarzt haben, der Hausbesuch macht und weil das Krankenhaus ihren Zustand massiv verschlechtern würde.

Ja, das ist 2026 in Deutschland. 😳

"Do no harm: supporting people with ME/CFS"

https://www.csp.org.uk/frontline/article/do-no-harm-supporting-people-mecfs

"How can physiotherapists provide effective therapies while ensuring patients with this debilitating condition feel safe and supported? Physios for ME offer their thoughts"

@mecfs

#MEcfs #PwME #MedMastodon #Physio #PEM #PESE

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