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@tomkindlon.bsky.socialSep 20, 2026, 5:21 PM

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Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "As my ME is severe, I have to spend most of my time lying down in bed in darkened room. However, the sleep dysfunction is what really isolates me - I am often asleep when everyone else is awake, but the opposite is also true. This makes my husband feel very lonely. He [and] the rest of my family always want more than I can give." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey thilidri RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 20, 2026, 3:41 PM

🧵
From @meresearchuk.bsky.social

Sleep dysfunction can be a deeply isolating symptom, shrinking individuals' daily functional hours.

The symptom burden & ripple effects can impact mental health. We urge anyone in distress to consider reaching out to appropriate organisations

#MEcfs #PwME #CFS
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Impact of sleep dysfunction in ME/CFS "It makes all other symptoms (especially cognitive problems) so much worse and everything so much more difficult. It's extremely difficult to plan anything because I've no idea when I'll be able to sleep or not." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey aft R E SiEjAr H SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 20, 2026, 1:32 PM

From Japan 🇯🇵

FreeSurfer-based amygdala subfield volumetry in long COVID and ME/CFS: clinical and immunological correlations

www.frontiersin.org/journals/neu...

"No group difference or partial correlation remained significant after correction for multiple testing."

#MEcfs #LongCovid #CFS #PwME

@tomkindlon.bsky.socialSep 20, 2026, 1:22 PM

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The patient organization @nichtgenesen.bsky.social has submitted this 11-page letter in German to Springer Nature. It criticises a new book chapter on 'Chronic Fatigue Syndrome' that includes stigmatizing language.

#MEcfs #CFS #PwME

@haebin.bsky.socialSep 20, 2026, 11:30 AM

When you wake up at 7AM on a sunday because you are so much in pain that you start your day with crying.
Six hours later I am still on a pain-level of 10/10.

... I am so tired of this.

#chronicpain #cfs #fms

@lulawitzescher.eurosky.socialSep 20, 2026, 10:54 AM

Meine Güte und ich dachte immer, ICH sei kreativ.

(Dabei liege ich im Bett und habe gar nichts gemacht. #CFS)

@tomkindlon.bsky.socialSep 20, 2026, 1:06 AM

How to Manage and Treat Post-Exertional Malaise (PEM)

www.youtube.com/watch?v=Na5z...

Screenshot from September AMMES newsletter

#MEcfs #LongCovid #PEM #PwME #CFS

Special Feature How to Manage and Treat Post-Exertional Malaise (PEM) Image showing the 4 presenters With the following text: In this webinar, Dr. David Putrino, Dr. Lucinda Bateman, Dr. Jennifer Curtin, and Charlie McCone discuss how PEM presents in Long COVID and ME/CFS, what current research suggests may be happening in the body, and why crashes can look so different from person to person. The conversation moves from understanding PEM to managing it. The panel shares practical approaches to pacing, reducing triggers, navigating a crash, and supporting baseline function, while also discussing emerging treatment strategies and areas of ongoing research.
@tomkindlon.bsky.socialSep 20, 2026, 12:57 AM

Diagnosis of chronic fatigue syndrome using beat-to-beat autonomic measurements

link.springer.com/article/10.1...

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS

Image of a heart with a heart beat superimposed on it with the following text Diagnosis of chronic fatigue syndrome using beat-to-beat autonomic measurements Lower values of beat-to-beat difference in HR and raw HF RRI (indicating reduced cardiac vagal tone) and higher values of dBP difference (more beat-to-beat increases, indicating higher sympathetic vascular tone) were related to being more likely classified as CFS patients. Low values of SV difference and low values of SV/FFM (both indicating less effective cardiac hemodynamics) were related to being more likely classified as CFS patients. Read more here>>
@stpaulsbay.bsky.socialSep 19, 2026, 9:14 PM

#ME/CFS is not an unknowable mystery illness—at least it doesn't have to be. It is a direct consequence of mineralocorticoid receptor overactivity and subsequent glucocorticoid receptor starvation driven by the #rs5522 variant. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.socialSep 19, 2026, 4:20 PM

"On this page you will find ongoing ME/CFS clinical trials looking for participants"

All currently look like they are in the US except the Open Medicine Foundation Study ME registry which is international

ammes.org/clinical-tri...

#MEcfs #PwME #CFS #LongCovid

Clinical Trials On this page you will find ongoing ME/CFS clinical trials looking for participants. For more ongoing clinical trials as well as completed clinical trials go to Clinicaltrials.gov You can read about the latest resources for investigating the causes and mechanisms of ME/CFS here: New resources for large-scale ME/CFS research Be sure to check the Institute for Neuro-Immune Medicine for their ongoing trials. See the Icahn School of Medicine at Mt Sinai for their ongoing trials. See Solve’s list of clinical trials for ongoing trials. Stanford University is recruiting for a number of ongoing research studies. Also see this google document for a long list of ongoing Long Covid trials: https://drive.google.com/file/d/1A_KYwsDR6_vzF8hqZTMhFan56Vzw-Gno/view
@tomkindlon.bsky.socialSep 18, 2026, 10:31 PM

(Melbourne, Australia)
"The MELLOW Study is investigating hormonal biorhythms and multisystem disruption in ME/CFS and Long COVID"

mecfs.org.au/get-involved...

#MEcfs #LongCovid #PwME #CFS

THE UNIVERSITY OF MELBOURNE bio21 institute HELP US UNCOVER THE BIOLOGICAL DRIVERS OF ME/CFS AND LONG COVID Your experience can drive tomorrow's breakthroughs. A precision health study exploring hormonal biorhythms, physiology, mood, and cognitive health across the menstrual cycle. 备 $200 REIMBURSEMENT FOR YOUR TIME Your participation could help improve understanding and lead to more targeted, effective treatments for ME/CFS and Long COVID.
@eikesky.bsky.socialSep 18, 2026, 8:29 PM

Hello seasonal affected exhaustion my old ~friend~ pain in the ass.
It appears you jump scared my body again.
I've spent all evening trying to nap
The baby's angry and keeps shouting "dad"

#soundofsilence #cfs #eds

@cfscounselling.bsky.socialSep 18, 2026, 2:01 PM

Need a healthy outlet for your frustration? Men's Counselling Link is here to help! Book a no-cost professional counselling session now and you'll find a pathway to becoming the man you want to be. #MCL #CFS #HopeLivesHere

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@joyelephant.bsky.socialSep 17, 2026, 5:11 PM

248/365 "won't break"
2x3in/5x7.6cm
#2026tinyart Can chronic fatigue break me? I am doing my best to not let it #BlueSkyArtShow #tradart #watercolor #tinyart #smArtist #arttherapy #mixedmedia52 #cfs #chronicfatigue #chronicillness #pink #pain

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@tomkindlon.bsky.socialSep 17, 2026, 12:27 AM

Myalgic encephalomyelitis/chronic fatigue syndrome and overlapping post-acute infection syndromes: international expert consensus framework for diagnostic standardization

link.springer.com/article/10.1...

s4me.info/threads/me-c...

Screenshot from Science for ME weekly update

#MEcfs #PwME #CFS

Myalgic encephalomyelitis/chronic fatigue syndrome and overlapping post-acute infection syndromes: international expert consensus framework for diagnostic standardization — Kujawski et al "The proposed tools quantify functional impairment and symptom severity rather than disease-specific pathophysiology. All cut-offs are provisional expert estimates requiring prospective validation." Article | Thread
@tomkindlon.bsky.socialSep 16, 2026, 9:12 PM

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My initial thoughts for what they are worth on a video on ME/CFS which has over 170,000 views in the first 6 days!

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

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

A YouTuber, Skallagrim, with 1.63 million followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” I have watched it & given it has over 170,000 views in 6 days, I thought I would highlight it. I don’t think it is particularly brilliant but the more people who understand this illness and can be sympathetic or empathetic to people affected the better. I think this will help with this. He has a slow, languid way of talking which I found easy to listen to. For a lot of it, I didn’t look at the screen as apart from the odd photo, it is him talking to the camera. I imagine there will be people unhappy with bits here and there with it. My minor criticism is that a couple of times, he mentions research suggests the brain can be affected in a way that can affect willpower. However at other times, he makes clear it is not something that can be overcome with willpower. And he emphasises a bit that “the absolute worst thing to do is push through.” He does use the F-word four times I think, all in the last third of the video (around 22:52, 24:12, 26:50 & 27:55). The main focus is his own experiences so there is hardly any talk of the more severe form of the condition. Anyway people can watch it themselves and either comment here and/or on the video page itself. #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@tomkindlon.bsky.socialSep 16, 2026, 8:26 PM

YouTuber @skallagrim.bsky.social with 1.63M followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” with over 170,000 views

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

See next post for a few quick thoughts

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #CFS
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Screenshot of a YouTube video with a man talking to camera What ME/CFS Is, and How It's Wrecking Me Skallagrim Skallagrim 1.63m subscribers Join Subscribe 5.4k Share Save Thanks 170,621 views 9 Sept 2026 Hardly anyone knows about this (even some people who have it themselves), so I figured this might be educational. It's definitely a life altering condition, and a difficult, frustrating journey to find anything that helps. In my opinion "Myalgic Encephalomyelitis" is the better term. "Chronic Fatigue Syndrome" ends up sort of downplaying the severity and might make you think it's "just being tired". If only that was all there is to it...