#me-cfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #me-cfs, aggregated by home.social.
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Here's the latest News in Brief (Sept. 7 - 13) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-721450
Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁
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From Germany 🇩🇪
Postural orthostatic tachycardia syndrome in adolescents with ME/CFS
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1836407/full
Screenshot from latest Science for ME weekly update
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Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon on Wednesday, September 30
Hopefully we’ll see some of you there
https://irishmecfs.org/blog/wednesday-september-30-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-associationCarers/parents/similar welcome.
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When I say I have “brain fog”, this is what is actually going on:
1. I can’t think too much or at all bc my brain literally feels like it’s overheating
2. I can’t have conversations bc I keep forgetting what we’re talking about throughout the convo
3. Also I can’t recall words
4. It makes learning new things extremely difficult -
Meine Kolumne für das Mo Magazin für Menschenrechte über ME/CFS
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2/
“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid -
A health update: month 6 of #Lyme-induced #MECFS #PAIS relapse.
Now finally biting the bullet and trying that joyless low-histamine diet while phasing out those darn antihistamines. Even the ones that are not supposed to, make me drowsy. No alc, no coffee, low sugar too. Have pity with me.
Cleared my schedule until late October. I have a life to live, and trying to push through this condition really *does* just make it worse.
You cannot fight this disease. So try to be gentle to yourself.
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Conspirituality 325: Long COVID Profiteers
The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
https://www.conspirituality.net/episodes/326-long-covid-updateHaven't listened so far but saw praise for it
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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Very recent videopresentation about ME/CFS and potential treatment using novel molecule IVO-21, from dr Jay H. Chung lab.
#MECFS #BrainFog #LongCovid #Mitochondria #ChronicFatigue
https://www.youtube.com/watch?v=IBXYhRInY0o -
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"Seventeen participants (35%) were classified as hypovolemic, 21 (43%) as normovolemic, and 11 (22%) as hypervolemic."
"findings suggest that static blood volume deficits alone are unlikely to be the principal determinant of OI in ME/CFS."
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NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ETRegister
https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ#/registration -
The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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ME Research UK:
A study led by Prof. Dmitri Pchejetski has found “shared biology” in five fatigue-related illnesses: ME/CFS, long COVID, PTSD, MS, and RA. However, there are important methodological limitations that must be considered. More info: https://bit.ly/4xPOzid
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ME Research UK
In the third deep-dive of our weekly Symptom Saturday series, we explore sleep dysfunction in ME/CFS – including lived experience, different patterns of sleep disruption, and research suggesting challenges across the brain and nervous system.
Read more:
https://www.meresearch.org.uk/sleep-dysfunction-in-me-cfs/#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 7 - 13.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-721450
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CW: :boosts_ok: Trans Mutual Aid
If you don't already know me, I'm a heavily disabled poc trans woman who's been bedridden by long covid and me/cfs for the last year (and dealing with long covid for 3ish). I was hoping not to have to make this post but with the way everything is getting more and more expensive in the US right now, I need to.
I'm trying to raise 500 for food and 200 for miscellaneous daily expenses to tide me over for the next few months :frog_blush:
(best option for me) Venmo: OctaviaConAmore
Paypal: https://paypal.me/OctaviaConAmore
Ko-fi: https://ko-fi.com/octaviaconamore
(remember to click the one-time option unless you really want to donate every month :mew_giggle: )(Unfortunately, options other than Venmo take pretty annoying chunks out, but if Venmo isn't an option, they're there as backup.)
Current total: 350/700
If you can't help by donating, please consider helping this post get around by boosting it :hug_love:
edit: thank you to everyone who has helped out so far~ :hug_love: half down, half to go~
#MutualAid #TransMutualAid #DisabilityMutualAid #CrowdFund #TransCrowdFund #DisabilityCrowdFund #HelpFolksLive2026 #Covid #LongCovid #MECFS
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Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
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Thanks to anyone who has liked and/or reposted my LinkedIn post. It now has over 5000 impressions so hopefully has educated quite a number of people about it.
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Therapy via Messaging
https://chroniclivingtherapy.com/insights-text-based-therapy/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots