#me-cfs — Public Fediverse posts

RE: https://disabled.social/@tomkindlon/117101517618677437

I liked this blogpost on the BPS model “Gordon Waddell, back pain, the subversion of the biopsychosocial model, and the UK government's development of a victim-blaming approach to disability” by K Johnstone

https://mecfs.substack.com/p/gordon-waddell-back-pain-the-subversion

Not on ME/CFS but easy to see parallels

#mecfs @mecfs

“On BPS [BioPsychoSocial] & disease causation: George Davey Smith’s cautionary tale” by Prof Chris Ponting

https://mecfsresearchreview.me/2026/08/11/on-bps-disease-causation-george-davey-smiths-cautionary-tale/

#MEcfs #PwME @mecfs

Bateria nagle spada do 1%. Jakby grypa bezobjawowa. Nie wykonało się większego wysiłku, ale nagle nie ma sił nawet wstać. Mgła mózgowa. Między innymi w ten sposób można określić to nienaturalne zmęczenie. Zespół zmęczenia to objaw stwardnienia rozsianego.
Opisuję go, jego skutki i możliwe radzenie sobie z tym:

https://barwy-sm.nemo.earth/zmeczenie

#stwardnienierozsiane #zmeczenie #zdrowie #choroba #mecfs #encefalopatia

NIH Workshop on Complex Multisystem Disorders
https://mregs.nih.gov/ninds/vf45-44z5606

Agenda here:
https://mregs.nih.gov/NINDS/VF45-44Z5/agenda/8852

A number of these speakers are well known in the ME/CFS, Long Covid and/or fibromyalgia communities

Screenshot from August Massachusetts ME/CFS & FM Association Newsletter

#LongCovid #MEcfs #Fibromyalgia
@mecfs @longcovid

# Poradnik maskowania

Polecamy uwadze poradnik przygotowany przez jedną z osób członkowskich naszego kolektywu. Zawiera on porady na temat tego jak chronić się przed chorobami przenoszonymi drogą powietrzną takimi jak Covid-19, grypa, gruźlica czy odra. Jest w nim też kilka wskazówek jak postępować w przypadku infekcji, głównie Covid-19, ale niektóre mają zastosowanie także przy innych chorobach. W miarę możliwości poradnik będzie aktualizowany w przypadku pojawienia się nowych informacji.

Maski filtrujące, oczyszczanie powietrza i izolacja w przypadku infekcji to podstawowe narzędzia w ograniczaniu rozprzestrzeniania się chorób w naszych społecznościach. Stosując je wykazujemy się solidarnością i troską o siebie nawzajem oraz przyczyniamy się do tworzenia bezpiecznej i inkluzywnej przestrzeni dla osób z niepełnosprawnościami, przewlekle chorych i z obniżoną odpornością.

https://cloud.nemo.earth/s/wjPBxKCgQ4GMaYX

#covid #zdrowie #maskowanie #masking #odpornosc #wirusy #mecfs #longcovid #flu #grypa #maseczna #nfz #polska #spoleczenstwo

(US only)
Borrow a Device and Report How It Works for You

https://www.renegade-research.org/signal

Screenshot from August Massachusetts ME/CFS & FM Association Newsletter

#LongCovid #MEcfs @mecfs @longcovid

Berlin - ich wünsch euch ne geile Zeit heute.

Ich hoffe ihr seid alles safe und habt Spaß. Achtet auf euch und andere. Wir sind vom Sofa aus dabei. Moderierter Livestream vom RBB

https://www.rbb24.de/panorama/beitrag/2026/08/livestream-rave-the-planet-techno-parade-berlin-tiergarten.html

#RaveThePlanet #MECfs #Berlin

Filmmaker Rolf Orthel: The price of independence, the burden of ME

https://meglobalchronicle.wordpress.com/2026/08/08/filmmaker-rolf-orthel-the-price-of-independence-the-burden-of-me/

Screenshot from latest Science for ME weekly update

#MEcfs #PwME @mecfs

I've seen many stories like this over the years from folks with ME/CFS - they get a cancer diagnosis & are shocked by the different treatment from doctors and nurses.

This story's about someone with Long Covid, but it's very similar.

"Breast cancer exposed the lack of care I receive for Long COVID"

https://thesicktimes.org/2026/08/14/breast-cancer-exposed-the-lack-of-care-i-receive-for-long-covid/

"Cancer has a sadly well-worn path. It showed me that I deserve dignity and support for Long COVID"

@longcovid @mecfs

#LongCovid #MEcfs #HealthCare #MedMastodon #MedEd

"Fact Sheet 3: ME/CFS: Information for Medical Professionals"

https://s4me.info/threads/fact-sheet-3-me-cfs-information-for-medical-professionals.51746/

@mecfs

4/4

#MEcfs #PwME #S4ME

"Fact Sheet 2: Post-exertional malaise (PEM)"

https://s4me.info/threads/fact-sheet-2-post-exertional-malaise-pem.51745/

@mecfs

3/4

#MEcfs #PwME #PEM #S4ME

"Fact Sheet 1: Introduction to ME/CFS"

https://s4me.info/threads/fact-sheet-1-introduction-to-me-cfs.51744/

@mecfs

2/4

#MEcfs #PwME #S4ME

New Fact Sheet from the Science for ME (S4ME) Forum:

"Management of severe and very severe ME/CFS"

https://s4me.info/threads/fact-sheet-4-management-of-severe-and-very-severe-me-cfs.51793/

This is the fourth fact sheet published by the S4ME forum. I'll post links to the other three in the replies.

@mecfs

1/4

#MEcfs #SevereME #PwME #S4ME

Comments/experiences welcomed on this query from one of our members:

“Do you know please what medication is best tolerated for people with ME for osteoporosis? I have multiple chemical sensitivities. probably mcas also”

#PwME #MEcfs #CFS @mecfs

October 18 I'm running the Amsterdam marathon! I'm using it to raise money for the Dutch Long COVID Foundation.

For 500,000 people (1 in 36) in NL, life has come to a stand-still due to Long COVID. No treatment; doctors nor patients know what to do.

That's why I'm aiming to raise €1050 in my run, €25,- for each of the 42K. Your donation for as many kms as you can will make a difference!

Will you support me? Thanks!

https://supporta.com/htg9/6mynzkh7vh

#longcovid #stichtinglongcovid #cfs #mecfs #mecvs

Hat jemand diesen Brief von der österreichischen PV bekommen? “Wahrheitsgemäße Erklärung über den gewöhnlichen Aufenthalt im Inland und Feststellung der Auslandsaufenthalte ab 1.2.2024” 

Die PV hat mehrere Befunde bekommen die bestätigen, dass ich seit 2024 komplett bettlägerig bin. Ich habe seitdem meine Wohnung nur mit Krankentransport verlassen können.

Wie kann die PV glauben, dass ich mit sehr schwerem ME/CFS irgendeinen Aufenthalt irgendwo machen könnte? Ist das einfach ein automatisiertes Formular, das an alle Pflegegeldbezieher·innen geschickt wird?

#PensionsVersicherung #PV #LongCOVID #MEcfs #Behinderung

RE: https://mastodon.social/@NichtGenesen/117089430124859888

#DieNeueNorm , #FrankfurterRundschau & #TheGlobalDisabilityNewsNetwork suchen
Berichte von #Eltern medizinisch komplex erkrankter Kinder (z.B. #EDS #MECFS #LongCovid #PostCovid , seltenen Schmerzsyndromen u.a.), die fälschlicherweise verdächtigt werden, ihr Kind absichtlich krank zu machen („Münchausen by Proxy“).

Mehr Infos auf der Website (s.u.), bei Fragen:

[email protected]

#nichtgenesen
#nichtgenesenkids

Petition to pause the McMaster's Lightning Process (FALCON) trial

https://www.change.org/p/long-covid-patients-deserve-better-pause-mcmaster-s-falcon-lightning-process-trial

https://s4me.info/threads/mcmaster-university-conducting-an-lp-trial-falcon.51303/post-711240

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #PwME @mecfs @longcovid

RE: https://mastodon.ie/@IrishMECFSAssociation/117089656553480886

Hope to see a few of you at this. 👋
#Louth #MEcfs #LongCovid @mecfs @longcovid

Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon on Wednesday, August 26

https://irishmecfs.org/blog/dundalk-informal-mecfs-social-meet-up-on-wednesday-august-26-hosted-by-tom-kindlon

Hopefully we’ll see some of you there.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid #Dundalk @mecfs @longcovid

If you want to follow science developments around LongCovid, this channel is a tip:
https://youtube.com/@longcovidtheanswers

Just now streamed the second part of the research of dr. Rob Wüst who showed that there's actual damage in muscles.

#longcovid #mecfs @longcovid

2/

Someone suggested it would be good to be able to hide the results from participants. So if anyone has anyone thoughts or suggestions on this, that would be great.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#mecfs
@mecfs

Brain-imaging study, small but well conducted. Will be interesting if it replicates.

'The elevation of thalamic lactate despite normal arterial oxygenation is consistent with the “virtual hypoxia” concept, in which increased metabolic demand or impaired substrate utilisation produces a functionally hypoxic tissue state. Together with the inverse thalamic tNAA/tCr-CBF coupling, this resting pattern was the principal between-group difference; we did not measure markers of inflammation or oxidative stress and thus cannot establish the upstream mechanism. However, this pattern is consistent with intrinsic mitochondrial injury or bioenergetic inefficiency, whereby the brain behaves as if it is already operating under chronic oxygen limitation.'

https://www.medrxiv.org/content/medrxiv/early/2026/08/12/2026.08.10.26359935.full.pdf

#MECFS #LongCovid

I have been asked for my opinion on an ME/CFS research proposal. I want to suggest an activity monitor or step counter as an outcome measure.

Unfortunately budget isn’t huge so would need to be two figures in US$/€/£ per unit. Suggestions welcomed.

#mecfs #pwme #cfs @mecfs

8/

“‘Recovering’ denotes having significantly improved in health and capacity, while not being completely free of symptoms.”

People can’t tell the future. People can’t know they will reach 100%. They might hope they will but until they have reached it, they haven’t recovered.
#cfs #pwme
@mecfs #mecfs

7/
“(Contd) ‘Recovering’ denotes having significantly improved in health and capacity, while not being completely free of symptoms. Except in relation to the below numbers, the accounts of those who are in the process of recovery have not been disaggregated from those of participants who are fully recovered.”
#mecfs
@mecfs

6/

Another reason to question whether they were really recovered:

“Some participants who are fully recovered talk about continuing to practice techniques that they had used as recovery tools (such as meditation, breathing techniques or pacing practices) after regaining their health.

#mecfs
@mecfs

Wie es sich anfühlt mit schwerem ME/CFS nicht mehr kommunizieren zu können:

„Mein Schmerz drang von innen gegen meine Haut, es gab keine Möglichkeit ihn nach außen zu tragen.

Ich wünschte du würdest mir unter die Haut kriechen und alles mit mir spüren. Nur für einen Moment. Dann kämst du wieder heraus und würdest sagen: dein Schmerz ist echt, ich habe ihn gesehen.“

- Alice im Nachtmeer

#SevereME #mecfs #amwriting #schreiben #bookstodon

Alright fedi hive mind, I have a challenge for you. I am looking for resources that explain ME/CFS and/or MCAS to a South Asian audience, to support a friend in explaining her needs to her family (immigrants in Canada). This has already stumped several South Asian people with ME, but I am asking just in case one of you has a special video or PDF or Facebook group hookup. Thank you for any leads!

Boosts welcome :)

#MECFS #MCAS #SouthAsians #AdvicePlease