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@s4me.infoSep 20, 2026, 6:59 PM

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. 14 - 20.

s4me.info/threads/news...

#MEcfs #PwMe #LongCovid #PwLC

@anilvanderzee.bsky.socialSep 20, 2026, 6:58 PM

Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark.

This looks really amazing!!

vimeo.com/user10350947...

#pwme #myalgicE #millionsmissing #severeME

Photo, no description
@tomkindlon.bsky.socialSep 20, 2026, 6:57 PM

3/

Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Impact of sleep dysfunction in ME/CFS "...Being unable to sleep until the early hours of the morning feels very lonely. My symptoms are too unpredictable and severe to have a job." Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey LIM RESEARCH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 20, 2026, 5:21 PM

2/
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.
@swastrosarah.bsky.socialSep 20, 2026, 4:17 PM

In mental illness this is not untrue.
On an unsplinted broken leg, it's 'inhuman and degrading treatment', state sponsored by @nhsenglandldn.bsky.social.
#HumanRights #pwME
Justice4ME.uk

@anilvanderzee.bsky.socialSep 20, 2026, 4:05 PM

A blog about the response of many denialist dismissive cognitive dissonance comments on social media whenever they are confronted with very severe ME in the media.

anilvanderzee.com/the-rush-to-...

#pwme #myalgicE #millionsmissing

@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
1/

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.
@whitneydafoe.bsky.socialSep 20, 2026, 3:02 PM

music sounds like noise, TV/movies look like people doing stuff on a screen, my brain can’t process or feel, but I’m just DYING to do something. Work on something. Make something. Engage with the world. garg! 🤯😶‍🌫️ 2/2

#mecfs #chronicillness #pwME #LongCovid

@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

3/
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

@mecvsvereniging.bsky.socialSep 20, 2026, 10:01 AM

2️⃣ Dat verandert niets aan iemands waarde als mens. Iedereen verdient respect, begrip en erkenning, ongeacht wat diegene op een dag wel of niet kan doen.

#mecvs #pwme #me #mecvsvereniging #contact #erkenning

@michaelnobbs.bsky.socialSep 20, 2026, 9:08 AM

It's been quite a while since I've posted the #MorningView from my gate. I'm wondering if it's a habit I can get back to...

Today, everything's looking rather lovely and green after some much needed sustained rain.

Wishing you a gentle day ❤️🐌

#MECFS #pwME #Wales #CreativeHabit

@achronicvoice.comSep 20, 2026, 1:30 AM

"Frequent #PEM crashes have compounding effects..it’s why those of us who’ve been living with this for years become militant about pacing..We’re not being dramatic. We’re trying not to permanently disable ourselves further.": buff.ly/0PWpU2Z

by @darthfoo.bsky.social
#disability #pwME #LongCovid

@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>>
@madelinenerd.bsky.socialSep 19, 2026, 11:57 PM

New podcast episode: MASKING
open.spotify.com/episode/7BEa...

Where I talk about how I mask pain and survival fear. And how that tends to work with persons with disabilities

#MyalgicEncephalomyelitis #canpoli #disability #MyalgicE #pwME #chronicpain #fibromyalgia #MEAction #Canada

@anilvanderzee.bsky.socialSep 19, 2026, 9:21 PM

"A Special Tribute to Anil van der Zee | 2026 Amsterdam ISLC-PAIS Conference"

Thanks to Fred Verdult for his talk and for organizing the honor. Thanks to Michael Chapman for the video of this special moment.

vimeo.com/whei/anil-ro...

#pwme #myalgicE #millionsmissing #severeME

@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