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@lilacfire.bsky.socialSep 25, 2026, 12:01 AM

From talking to many w/ ME like me & #LongCovid, it's the same illness. But medical profession can't seem to grasp that or want to admit it's wrong to compartmentalize.
Frustrating to have Long Covid patients treated seriously while ME sufferers patronized. #MyalgicEncephalomyelitis #ME
#bcpoli

@meactnet.bsky.socialSep 24, 2026, 10:40 PM

"Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors...there has seldom been a stronger case for a public inquiry."

@georgemonbiot.bsky.social discusses #MyalgicEncephalomyelitis.

@tomkindlon.bsky.socialSep 24, 2026, 10:30 PM

(Queensland, Australia)
"Help Us Research Chronic Neuroinflammation in ME/CFS"

More information here (third item)
mecfs.org.au/get-involved...

The QR code goes here:
www.unisc.edu.au/thompson-ins...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

UniSC Australia Thompson Institute Help Us Research Chronic Neuroinflammation in ME/CFS We are seeking adults aged 18-65 with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) to assist us to investigate chronic neuroinflammation in ME/CFS. You could be eligible if: • You are aged between 18-65 (with ME/CFS). • Can communicate in English. Have no neurological or active psychiatric illnesses. As a research participant, you would take part in: • At your own pace, questionnaires to assess different aspects of mental and physical health status. • A physical assessment. One magnetic resonance imaging (MRI) scan (50 minutes scanning time plus preparation). One blood and saliva sample collection. Participants with fatigue conditions will also take part in: Two clinical telehealth interviews with two specialists. Each interview will be scheduled for 30-45 minutes. To express your interest or learn more, please contact: Anya, Research Coordinator Email: cfs@usc.edu.au We appreciate your time and effort, so participants will be gifted $50.00 AUD for their participation and will receive a copy of their brain scan.
@tomkindlon.bsky.socialSep 24, 2026, 9:06 PM

As many of you already know, @georgemonbiot.bsky.social has published another hard-hitting article on ME in the Guardian today.

Great to see such coverage, especially as the Guardian published some rubbish by others before

www.theguardian.com/commentisfre...

#MEcfs #PwME #MyalgicEncephalomyelitis

Opinion ME / Chronic fatigue syndrome Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed George Monbiot George Monbiot Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors Thu 24 Sep 2026 01.00 EDT Somebody sitting on a bed looking at a wall with a display of negative past medical experiences  Illustration: Bill Bragg/The Guardian
@crashmargulies.bsky.socialSep 24, 2026, 7:39 PM

New blog post: Memorializing ME/cfs Deaths - Arnaud Denis

crashmargulies.dreamwidth.org/37076.html

#MEcfs #MillionsMissing #MAID #MyalgicEncephalomyelitis

Photo of Arnaud Denis, a young white man with dark eyes, dark short hair, and a dark short goatee. It's digitally set over a distressed wood background with blue roses and a blue butterfly. Text reads, Arnaud Denis. Rest in Peace. September 22, 2026
@meactionscotland.bsky.socialSep 24, 2026, 8:29 AM

Please read and share @georgemonbiot.bsky.social column about the ongoing mistreatment of people with ME. Can we break through the wall of indifference?

#MyalgicEncephalomyelitis #pwME

@meactionuk.bsky.socialSep 24, 2026, 8:28 AM

Please read and share @georgemonbiot.bsky.social column about the ongoing mistreatment of people with ME. Can we break through the wall of indifference?

#MyalgicEncephalomyelitis #pwME

@meadvocatesireland.bsky.socialSep 24, 2026, 7:39 AM

. @georgemonbiot.bsky.social article today directly addresses the neglect, dismissal & harm experienced by people with ME, including the continuing failure to translate changes in guidance and scientific understanding into appropriate care.
#ME
#MyalgicEncephalomyelitis

@meactnet.bsky.socialSep 23, 2026, 6:09 PM

The afternoon sessions begin with Illuminating the Invisible Infection-Associated Conditions. You might recognize some names for this one.

Follow along with our Scientific Director, Jaime Seltzer. @exceedhergrasp1.bsky.social

#MECFS #NEISvoid #MyalgicEncephalomyelitis #NIH

Slide from NIH conference with title and speakers. Illuminating the Invisible: Infection-Associated Conditions Moderated by Joseph Breen, Ph.D., NIAID Nancy Klimas, M.D., Nova Southeastern University Judith James, MD., Ph.D., Oklahoma Medical Research Foundation Michal Caspi Tal, Ph.D., Massachusetts Institute of Technology Alba Azola, M.D., Johns Hopkins University School of Medicine
@tomkindlon.bsky.socialSep 23, 2026, 5:34 PM

2/
I have just read it will be recorded.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.socialSep 23, 2026, 5:16 PM

On in 13 hours 43 minutes

5 pm Sydney today
7 pm NZ today

12 am midnight California tonight
8 am UK tomorrow morning
9 am Germany tomorrow morning

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@cgatist.bsky.social

@meactnet.bsky.socialSep 23, 2026, 1:46 PM

Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social reporting live (virtually) from the NIH From Mechanisms to Medicine conference.

#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #NIH

@tomkindlon.bsky.socialSep 23, 2026, 10:34 AM

One week to go
#MEcfs #LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #CFS #speirgorm #spéirgorm #speirghorm #spéirghorm

@hollyl.bsky.socialSep 22, 2026, 10:56 PM

Lots of folks in #pwME #MyalgicEncephalomyelitis #MECFS #Spoonie community are in need.

Mutual aid matters. When able, I try to divide giving between mutual aid & non-profits doing the work to help folks so hopefully one day they will not need mutual aid!

Sharing a few folks in need.

@meadvocatesireland.bsky.socialSep 22, 2026, 4:57 PM

HSE recently launched a dedicated ME webpage for healthcare professionals

healthservice.hse.ie/staff/inform...

#MyalgicEncephalomyelitis
#ME

@meadvocatesireland.bsky.socialSep 22, 2026, 4:53 PM

‘What About M.E.?’

A collection of 4 short plays, exploring the experiences & realities of people living with ME & Long Covid, bringing these often poorly understood conditions to the stage in a powerful and thought-provoking way.

www.youtube.com/watch?v=IYID...

#MyalgicEncephalomyelitis
#ME

@irishmecfsassoc.bsky.socialSep 22, 2026, 3:43 PM

2/
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis

#MyalgicEncephalomyelitis #MyalgicE

From the Irish ME/CFS Association: "What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis (Culture Night 2026)" Congratulations to all involved for these plays (including Association members Aoife Delany Reade & Jacinta Fay) which were performed live in Galway as part of Culture Night last Friday. There was also a post-show discussion panel involving Aoife, Jacinta, Áine O'Hara & Association secretary Orla Ní Chomhraí took part. The organisers took disability access seriously making a recording of the plays available live (at the link above) at the same time as the live performance. The post-show discussion panel could also be watched online live (we are unaware of any recording) and one of the panellists was able to give her comments for the discussion as recordings as she was not able to be there on the night. Great to see ME being highlighted through the arts. Note: the F-word is used in the second, third and fourth plays though only sparingly #MyalgicEncephalomyelitis #MEcfs #PwME #CFS #LongCovid See less
@tomkindlon.bsky.socialSep 21, 2026, 8:02 PM

10/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "Dread going to bed. I've forgotten what a good nights sleep feels like! Wake up feeling no benefit from having been in bed 10 hours...." RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 21, 2026, 6:28 PM

9/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS "...when I'm in PEM it is even worse. I struggle to fall asleep despite being absolutely crushed by fatigue and exhaustion." RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
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