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@litsadremousis.bsky.socialSep 15, 2026, 1:01 AM

Mayo Clinic and ME Action recently announced they’re working on new emergency room guidelines for people w/ #MyalgicEncephalomyelitis and #LongCovid.

We’re so badly mistreated in ERs that many of us stop going.

That’s tens of millions of us.

But sure, give The Pitt another award.

#Emmys

@meactnet.bsky.socialSep 14, 2026, 11:04 PM

We’re fighting to make sure people with ME, Long COVID, and other infection-associated chronic conditions don’t fall off either cliff.

If you do not have access, full STAT article: archive.ph/SNCKL#select...

#Medicaid #pwME #MyalgicEncephalomyelitis #MECFS #longCovid

@tomkindlon.bsky.socialSep 14, 2026, 10:10 PM

Hope to see a few of you at this. 👋

#MyalgicEncephalomyelitis #LongCovid #CFS #ChronicFatigueSyndrome

@mediaactivist.comSep 14, 2026, 5:46 PM

For years, #PwME have been gaslit and denied care - yet with an anarchist spirit they've largely relied on each other for resources through the internet. My op-ed for Freedom News: freedomnews.org.uk/2026/09/12/d... #MyalgicEncephalomyelitis #ME #Disability #ableism #anarchism

@tomkindlon.bsky.socialSep 14, 2026, 2:01 PM

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

@onaalbizu.bsky.socialSep 13, 2026, 2:23 PM

A powerful image for an impacting illness
#MyalgicEncephalomyelitis

@paulaknight.bsky.socialSep 13, 2026, 10:32 AM

A couple of weeks ago it was my 3000th day bedridden. I drew this to mark the occasion. It's a long time for both illness-haver and carer
#MyalgicEncephalomyelitis #MEcfs
#ChronicIllness #DisabledArtists

A three panel one page comic featuring a white woman in a profiling bed in grey blue watercolour and the words 3,000 days in bed with severe myalgic encephalomyelitis. Other colours are brick red and muted orange
@litsadremousis.bsky.socialSep 11, 2026, 8:35 PM

Everyone w/ #MyalgicEncephalomyelitis or #LongCovid knows this, but for allies who want to learn more:

Jaime Seltzer @exceedhergrasp1.bsky.social is the Scientific Director of ME Action @meactnet.bsky.social & Time Mag named her to their Top Science 100.

She’s covering Stanford’s ME symposium rn:

@meactnet.bsky.socialSep 11, 2026, 5:51 PM

Morning session is done! You can keep up with today's talks via our Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social.

Are your feet up? Drinking electrolytes? Pacing yourself? Remember it is all being recorded!

#MyalgicEncephalomyelitis #MECFS @openmedf.bsky.social

@meactnet.bsky.socialSep 11, 2026, 3:39 PM

Our Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social is at the Stanford ME/cfs Conference Community Symposium. Since today is open to the community, Seltzer will sharing in the thread below!

#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid

@meactnet.bsky.socialSep 11, 2026, 2:44 PM

Starting soon! Please note it will be recorded for those unable to attend!

MEAction's Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social is attending as she has been the previous two days as well.

Take care all!

#MyalgicEncephalomyelitis #MECFS

@litsadremousis.bsky.socialSep 9, 2026, 8:50 PM

Annnnnnnd today in #MyalgicEncephalomyelitis News and Medical Incompetence:

Just had to explain to a provider that, yes, two weeks ago when I had a simultaneous staph infection and sinus infection, my muscle pain became unbearable and the infections were the reason.

@shimetta.bsky.socialSep 9, 2026, 8:39 PM

Stairs, sure enough, put me in a PEM flare once again.

This scene makes me laugh so hard now in the original game 😂

So funny I'm sharing it twice

Me too Barret, same

#mecfs #MyalgicEncephalomyelitis #ffviiscreenshot #MEhumor #ffvii #chronicillness

Final Fantasy VII screenshot of Cloud, Tifa, and Barret going up the stairs inside the Shinra building, Barret's text reads: "Marlene, daddy wanted to see your face one more time..."
@tomkindlon.bsky.socialSep 9, 2026, 5:36 PM

I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜 #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

@colleensteckel.bsky.socialSep 9, 2026, 4:12 PM

New View from the Trenches of #MyalgicEncephalomyelitis article covers a few stories that reached outside the ME Bubble:

EFNA article

Tracking patients in Australia

Anil Knighted for His Efforts

France updates classification

+ more

colleensteckelmeiccinfo.substack.com/p/news-2026-...

@tomkindlon.bsky.socialSep 9, 2026, 2:53 PM

2/
I very rarely post on LinkedIn these days but decided to do a longer post today on this.

With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom KindlonTom Kindlon • YouYou Assistant chairperson, Irish ME/CFS AssociationAssistant chairperson, Irish ME/CFS Association 8m • 8 minutes ago • Visible to anyone on or off LinkedIn Today marks the 10th anniversary of a little known but important anniversary in the ME/CFS world. Ten years ago a psychiatrist, Peter White, of Queen’s University of London was forced to release some data from the PACE Trial he led which cost £5 million of UK taxpayers’ money (funding was received approximately two decades ago so it is the equivalent of around £9 million today). The investigators themselves dubbed this the “definitive” trial of graded exercise therapy and cognitive behaviour therapy for CFS. The data revealed, using the definition for the recovery the investigators committed to in their own published protocol, that neither CBT nor graded exercise therapy led to an increased rate of recovery. The PACE Trial investigators had been desperate for this data not to be released, with over £200,000 spent on legal fees fighting a Freedom of Information request from an Australian patient, Alem Matthees. Like many of us, Alem was desperate to get the data rather than relying on the very questionnable spin/hype the investigators had been presenting. The PACE Trial investigators had vigorously, successfully fought other FOI requests relating to the recovery data. Alem effectively became an FOI expert and in a David-vs-Goliath battle, he won the case. Unfortunately all the effort badly affected his health and he has been bedbound with very severe ME since. Anyway the data allowed a team including myself to reanalyse the trial. The image is a screenshot from our main reanalysis paper. This FOI case and subsequent reanalyses played a significant part in guidelines for ME/CFS being changed in the UK and elsewhere. A lot more could have been said but I thought I would keep it brief for busy LinkedIn users.
@tomkindlon.bsky.socialSep 8, 2026, 4:06 PM

10/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "It is like my IQ dropped 40 points. I used to be intelligent, but now I don't understand simple things anymore. I feel so stupid and insecure because of this. I have to check everything I do to see if it is correct." R ElidU CH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 8, 2026, 2:39 PM

9/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "I lose words - just can't find them. I also lose the ability to form sentences and speak properly when I've "overdone' it. Overdoing it is always something very small - like talking too long with friends or standing up too long washing-up etc...." Lith RESLEJAIICH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 8, 2026, 1:27 PM

9/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME

Impact of cognitive dysfunction (brain fog) in ME/CFS "My PhD and academic career are on long term hiatus because of ME/CFS, and one of the biggest factors is the brain fog. I cannot properly concentrate on anything that requires actual brain input for more than 20 minutes before both my mind and body shut down and I am useless for hours following..." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey aldrA RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 8, 2026, 10:01 AM

8/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS R6IESOArH SCO36942 "Head full of cotton wool." INFORM. INFLUENCE. INVEST.
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