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@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
@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.
@swastrosarah.bsky.socialSep 18, 2026, 7:42 PM

Just blown away by Alem being well enough after 9 years with vs #ME to be communicating with us here.
This, together with Karen Gordon in East Sussex, should be enough to show @england.nhs.uk how WRONG it is to treat #pwME as collateral damage in its never ending war on patient safety 🛟
@rcn.org.uk

@anilvanderzee.bsky.socialSep 18, 2026, 5:30 PM

Teenagers and siblings Anna and Moritz have very severe ME. They lie in darkened rooms only meters apart, yet they have not seen each other for almost a year.

Watch this short heart wrenching segment from a documentary about ME.

youtu.be/NgBPfuMtA6s?...

#pwme #severeME

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@irishmecfsassoc.bsky.socialSep 18, 2026, 3:22 PM

There is now an ME page on the HSE website. It includes details for the Lived Experience Groups that are still recruiting "people living with ME and those who support them"

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

#MyalgicEncephalomyelitis #PwME

HSE logo Pay Pensions and Retirement Leave Staff Information for healthcare professionals Myalgic Encephalomyelitis (ME) Myalgic Encephalomyelitis (ME) is a serious, long-term complex disease that affects multiple body systems and can greatly reduce a person’s health and quality of life. ME has historically been described and named in inconsistent ways. Currently, there is no agreed Irish guideline for diagnosing, treating, or managing ME, and approaches vary worldwide. In 2025, Ireland’s Health Service Executive (HSE) received funding to create the first HSE National Clinical Guideline for ME. The new guideline will aim to improve understanding, diagnosis, treatment, and management of ME in Ireland, resulting in quality care for people living with ME.
@mecvsvereniging.bsky.socialSep 18, 2026, 11:00 AM

Alvast hartelijk dank voor je bijdrage!

#mecvs #PAIS #cvs #ME #pwme

@actionforme.bsky.socialSep 18, 2026, 8:00 AM

⏰ Our AGM is next week!

Join us online on Tuesday 22nd Sept from 2pm–3pm to hear about Action for ME's work over the past year and our future priorities.

There's still time to register: us02web.zoom.us/webinar/regi...

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

Action for ME logo followed by stamp saying "Final reminder". Text below reads "Annual General Meeting. Last Chance to register. Hear about our organisation's activities and acheivements over the past year and look ahead with us to future priorities. Tuesday 22nd September 2026 2-3pm Online - Zoom.
@tomkindlon.bsky.socialSep 18, 2026, 12:27 AM

The Debt Came Due: Notes From a Crash by @darthfoo.bsky.social

darthfoo.substack.com/p/the-debt-c...

Screenshot from September AMMES newsletter

#MEcfs #LongCovid #PostExertionalMalaise #PEM #PwME

Image of someone lying flat on the sand, looking exhausted with the following text The Debt Came Due: Notes From a Crash "There is a version of my life that exists in my memory like a photograph from a trip I’ll never take again. In that version, I wake up and get out of bed without negotiating with my body first. I drive to work. I talk to people. I solve problems. I go home. I am tired in the way ordinary people are tired, the kind of tired that a night’s sleep fixes. That life is gone. What replaced it has a name. Long COVID. ME/CFS. Post-exertional malaise. The clinical language is clean and distant, which is probably why it fails so completely to describe what it actually feels like to live inside this body right now. Here is what it feels like: I am in a crash." Read more here>>
@tomkindlon.bsky.socialSep 17, 2026, 9:25 PM

Great to see Alem (Matthees) has just joined Bluesky @alemmatthees.bsky.social
#MEcfs #PwME

@irishmecfsassoc.bsky.socialSep 17, 2026, 8:35 PM

“Plays exploring living with ME for Galway Arts programme”
www.tuamherald.ie/2026/09/17/p...

Only the first and third paragraphs mention ME.

#MEcfs #PwME #Galway #speirgorm #speirghorm #spéirgorm #spéirghorm

@anilvanderzee.bsky.socialSep 17, 2026, 6:37 PM

Vanaf vandaag is deze hand-out mét stappenplan ter ondersteuning van patiënten met post-acuut infectieuze ziektes gratis te downloaden via:

www.devragendokter.nl/webshop/prod...

#pwme #myalgicE #millionsmissing #severeME #LongCovid #lyme #QVS #postsepsis #PAIZ #PAIS #IACC

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@meactnet.bsky.socialSep 17, 2026, 6:00 PM

TOMORROW! The CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call is on Sept. 18th at 3:00 pm ET. Register: https://ow.ly/iV8W50ZLwx3

Guest speaker: Nancy Klimas, MD. Also featuring program updates from CDC's ME/CFS program staff and a Q&A.

#pwME #MECFS #CDC

Announcement for CDC ME/CFS SEC Call on September 18, 2026, from 3 to 4:30 pm ET with registration required. Photo at bottom shows a person on their couch attending an online meeting with a laptop. Blue background with orange accents. Text: CDC ME/CFS SEC Call Featuring a presentation Dr. Nancy Klimas, Director of the Institute for Neuro-Immune Medicine at Nova Southeastern University. Also featuring program updates from CDC's ME/CFS program staff and a Q&A.
@stpaulsbay.bsky.socialSep 17, 2026, 5:00 PM

While the "Hundredth Monkey" effect may be literally debunked, I still hope for a critical threshold of collective awareness. We need a mass awakening to help #pwME see that static cortisol blood tests are actively hiding the chronic MR overactivity and systemic GR starvation driving their symptoms.

@openmedf.bsky.socialSep 17, 2026, 3:04 PM

➡️ Subscribe to OMF's newsletter: https://ow.ly/LjU050ZOLGr

When you do, you’ll get the latest on OMF research, announcements & more—delivered straight to your inbox. Your information is kept private, and you can unsubscribe anytime.

#pwME #MECFS #LongCOVID #pwLC

Envelope with a newsletter invitation from Open Medicine Foundation against a background of autumn leaves.