Tom Kindlon

Yes, a very disappointing work in Norway. Guidelines based on quackery isn't going to bring anybody back to a decent life.

Portrait of Dr. Jessica Maya, new VP of Scientific Programs at Solve M.E., with a quote about advancing ME/CFS research and community support.

We’re excited to welcome Dr. Jessica Maya as our new VP of Scientific Programs!
Jessica brings deep experience in research strategy and collaboration, and will help accelerate progress for people living with ME/CFS, Long Covid, and associated conditions.
Join us in welcoming her!

Announcement for a webinar on GLP-1 drugs reducing symptoms in ME/CFS patients, featuring Professor Carmen Scheibenbogen and Dr. Jessica Maya.

Join us for a webinar with Dr. Carmen Scheibenbogen, “GLP-1 Drugs to Reduce Symptoms in People with ME/CFS & Identify Disease Subgroups," and learn how her research could help identify biomarkers & treatments.

Thurs., April 16 @ 8:30 am PT / 11:30 am ET

Register here:
https://ow.ly/AybC50YmL8c

Solve M.E. webinar announcement for April 28 on discovering target antigens for dysfunctional T cells in ME/CFS and Long COVID with four expert speakers.

📢 New webinar! Dr. Liisa Selin, Dr. Ayano Kohlgruber, & Dr. Roshan Kumar will discuss "The Discovery of Target Antigens for Dysfunctional T Cells in #MECFS and #LongCOVID."

WHEN: Tuesday, April 28 @ 3:00 pm PT / 6:00 pm ET.

Register here:
https://ow.ly/VnlJ50YmLTQ

On behalf of Solve M.E., President & CEO Emily Taylor calls for the Los Angeles City Council to recognize International Long Covid Awareness Day on March 15.

Solve M.E. is proud to have supported the call for the Los Angeles City Council to acknowledge International Long Covid Awareness Day (March 15). The Council passed the resolution and will light the LA City Hall teal. Read our letter here:
https://ow.ly/hLQz50YoSzY

#LongCOVIDAwareness

ME/CFS affects millions but isn't part of standard clinical training. This Advocacy Week (Mar 23–27), Solve M.E. & #MEAction Network will ask patient safety agencies to support our mission to introduce #MECFS questions into qualifying national medical exams.
Sign up:
🔗https://ow.ly/GbOp50YoTVe

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New piece on this from David Tuller

More on Norway's problematic draft guidelines--patient representatives dissent @
virology.ws/2026/03/03/t...

#MEcfs #CFS #PwME

again, even if this were the only bad thing #covid could do to me?

i still would be fiercely protecting myself from it in 2026!

i like being able to taste foods! flavor is amazing! eating without tasting it—until/*IF* my sense of taste ever comes back—would be a horrible experience!

Y'all enjoying your 9th round of covid?

RACGP logo AJGP Logo Advertising AJGP > March > Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome Viewpoint Volume 55, Issue 3, March 2026 Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients? Jacqueline Stallard Stephan Praet Sandeep Gupta Angela Smith doi: 10.31128/AJGP-03-25-7614 | Download article Cite this article BIBTEX REFER RIS

Well done and thanks to the authors of this piece which seems to be well researched 👍👏

Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome / myalgic encephalomyelitis harming patients?

www1.racgp.org.au/ajgp/2026/ma...

#MEcfs #CFS #PwME

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Very disappointing 🙁

“The very real danger of deterioration as a result of too much activity/exercise/repeated PEM is not communicated in a meaningful way. Compare that to the section of medication, where side effects are clearly communicated!”

#MEcfs #PwME #PostExertionalMalaise #CFS

CD169+ and HLA-DR+ extracellular vesicles are highly represented in human plasma and dynamically expressed in SARS-CoV-2 infection and long COVID-associated sequelae — Fanelli et al. "the analysis of EV cell-derived compartments highlighted that HD samples displayed a balanced EV profile characterized by stable monocyte- and platelet-derived EVs and low immune activation markers." "LC subjects exhibited an intermediate but distinct EV signature, characterized by persistent CD169+ and NK-derived EVs and reemergence of T-cell-associated EVs, supporting the presence of chronic immune dysregulation rather than complete immune resolution."

CD169+ and HLA-DR+ extracellular vesicles are highly represented in human plasma and dynamically expressed in SARS-CoV-2 infection and long COVID-associated sequelae

www.frontiersin.org/journals/cel...

Screenshot from latest Science for ME weekly update

#LongCovid #COVID19 #COVID

But of course, the conversation isn’t really about tools. It’s about what people think tools mean. If you’ve been taught that needing help makes you weak, choosing a mobility aid feels like a confession. If you’ve grown up in a culture that worships independence, using support feels like failure. I wish that weren’t true. I wish the internalized shame weren’t so consistent. I wish the world didn’t make people fight so hard for the right to make things easier. Somewhere along the way, struggle got reframed as virtue. But difficulty is not a moral category and neither is ease. There is no gold star for doing things the hardest way. There’s no cosmic prize for exhausting yourself into a puddle after a task that could have been gentler. But there is something remarkable (soft, almost tender) in noticing how your body responds when you allow it support. And listen, I’m not romanticizing any of this. There’s nothing glamorous about having to reorganize your life around a nervous system that misfires like a smoke alarm with low batteries. But dignity is always worth protecting. And capacity extenders, at their best, are tools of dignity. The moment a person realizes “I can still participate, just differently” is often one of the most beautiful quiet victories.

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From: "The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

onelifelivedwell.substack.com/p/the-quiet-...

#chronicillness #Spoonie

Systematic Examination of Gene Expression and Proteomic Evidence Across Tissues Supports the Role of Mitochondrial Dysregulation in ME/CFS — Gregory R. Keele et al. "This study leveraged gene and protein expression data from the mapMECFS data repository and the DecodeME Genome-Wide Association Study (GWAS) to assess consistent gene signatures across studies."

Systematic Examination of Gene Expression and Proteomic Evidence Across Tissues Supports the Role of Mitochondrial Dysregulation in ME/CFS

www.mdpi.com/1422-0067/27...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Single-cell analysis reveals immune remodeling of monocytes, NK cells, T cell exhaustion, and Galectin-9–associated depletion of gamma delta and mucosal-associated invariant T cells in Long COVID with ME/CFS — Shahbaz et al. "our findings support a model in which altered mucosal immune–metabolic crosstalk, rather than intrinsic lymphocyte dysfunction, underlies the immune dysregulation observed in idiopathic ME/CFS and LC" Article | Thread

From Canada

Single-cell analysis reveals immune remodeling of monocytes, NK cells, T cell exhaustion, and Galectin-9–associated depletion of gamma delta and mucosal-associated invariant T cells in #LongCOVID with #MECFS

www.frontiersin.org/journals/imm...

Screenshot from Science for ME update

Blue promotional graphic titled “Parliamentary Friends of ME/CFS Speaker Announcement” with a “Register Today” banner showing Tuesday 10 March 2026 and times 11:00 AM AEDT and 1:00 PM AEDT. Three speaker headshots are shown with names: James Dunn, Sandra Goodyer and Dr Emma Tippett. Partner logos appear along the bottom (Bridges & Pathways, Emerge Australia, MEANA, ME/CFS Australia, and Myalgic Encephalomyelitis Group Australia).

There is still time to register to join #MECFSAllianceAustralia and co-chair Dr Mike Freelander MP at the 2026 meeting of the Parliamentary Friends of ME/CFS group.

🗓️ Tuesday, 10 March 2026
⏰ 11:00am – 1pm AEDT
📍Online via Zoom
🔗 zurl.co/xRiMi

#FairGoForME

Graphic promoting a “Parliamentary Friends of ME/CFS Meeting” with hashtag #FairGoForME. Three speech bubbles clipped to a clothesline read “We”, “need”, “you” in blue, red and green. A banner says “Parliamentary Friends of ME/CFS Meeting – Email your MP”. Logos along the bottom include Bridges & Pathways, Emerge Australia, MEANA, ME/CFS Australia, and Myalgic Encephalomyelitis Group Australia.

📢 #MECFS needs political attention - and MPs need to hear from us. Email your MP (2 mins!) and urge them to attend the Parliamentary Friends of ME/CFS meeting on 10 March.
Take action 👉 zurl.co/DG4nc

Let’s fill the room. 💙

#FairGoForME #MECFSAllianceAustralia

1) A large study of ca. 2000 ME/CFS patients analyzed post-exertional malaise (PEM) scores and differences between ME/CFS subgroups that mostly experience physical or mental PEM.

This is from Lenny Jason's group in Chicago.

1) A new paper from the Lifelines cohort reports that only 14% of people with ME/CFS received a formal diagnosis.

while #covid is dulling our senses, including reducing “levels of key taste-cell protein.”

(IDK, even if losing my sense of taste was the *only* bad thing covid could do to me—and the rest of this thread didn’t apply—i still wouldn’t want to risk getting covid!)

“Norway’s Problematic Draft Guideline Combining Long-Term Fatigue and ME/CFS” by @davetuller1.bsky.social

virology.ws/2026/03/02/t...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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News Release 2-Mar-2026 Study identifies molecular cause of taste loss after COVID Research links persistent loss of sweet, bitter and umami taste to reduced levels of key taste-cell protein Peer-Reviewed Publication University of Colorado Anschutz FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail AURORA, Colo. (Jan. 29, 2026) – Scientists have identified molecular and structural changes in taste buds that may explain why a small subset of people experience long-term taste loss after COVID-19 infection. The study, published last month in Chemical Senses, provides the first direct evidence linking patients’ reported taste changes to measurable biological abnormalities inside taste cells. What causes long-term taste loss after COVID-19? Researchers from the University of Colorado Anschutz and two Swedish universities studied 28 non-hospitalized patients who reported persistent taste disturbances more than one year after contracting COVID-19.

News Release 2-Mar-2026
"Study identifies molecular cause of taste loss after COVID"

"Research links persistent loss of sweet, bitter and umami taste to reduced levels of key taste-cell protein"

www.eurekalert.org/news-release...

#LongCovid #PASC #PwLC #postcovid #postcovid19

News Release 2-Mar-2026 Long COVID and recovery among US adults JAMA Network Open Peer-Reviewed Publication JAMA Network FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail About The Study: In 2024, 8.3% of U.S. adults—an estimated 21.3 million—reported ever having long COVID (LC), among whom nearly 6 in 10 reported recovery, consistent with RECOVER initiative findings showing similar LC prevalence in 2023 and 2024 and longitudinal Veterans Affairs data demonstrating declining LC prevalence. Yet many adults, particularly those 35 years or older, continue to experience lasting symptoms. With no LC treatment demonstrating clear efficacy, greater investment in understanding biological mechanisms, including immunotypic differences between those who recover and those who do not, may provide insights into pathways of persistence and potential targets for intervention.

News Release 2-Mar-2026
Long COVID & recovery among US adults

www.eurekalert.org/news-release...

"With no LC treatment demonstrating clear efficacy, greater investment in understanding biological mechanisms...may provide insights into pathways of persistence & potential targets for intervention"

Med Sci (Paris) "Covid long : une longue histoire" This French article by Ilana Löwy in medicine/science argues that Long Covid patients are confronted with an "epistemological injustice": a lack of recognition of their suffering. Because of an absence of objective signs of a recognized disease some health professionals incorrectly consider it to be a psychosomatic condition.

Med Sci (Paris) "Covid long : une longue histoire"

French version:
www.medecinesciences.org/fr/articles/...

Google English translation
www-medecinesciences-org.translate.goog/fr/articles/...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #MEcfs #postcovid #postcovid19

Guardian My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’ Long read by Hermione Hoby describes her lengthy struggle with illness with remissions and relapses before getting an ME/CFS diagnosis, and her experiments with alternative treatments including brain retraining. "I was wrong to think that this chronic condition demanded meaning be wrested from it. What it asks for is so much more banal – just the ongoing work of management and mitigation."

My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’

www.theguardian.com/society/2026...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Bloomberg How Covid Quietly Rewires the Brain An adapted article based in an upcoming book "After Covid: The Health Impacts That Will Last Generations" by Jason Gale. Avindra Nath talks of his research into Covid and Long Covid. Nath says it has not been surprising to see overlap in symptoms with ME/CFS. Article (Paywalled) l Thread

How Covid Quietly Rewires the Brain

www.bloomberg.com/news/feature...

archive.md/FYsGV

Screenshot from latest Science for ME weekly update

#LongCovid #NeuroPASC #COVIDBrain #PASC #PwLC #postcovid #postcovid19

I’ve watched a simple shower chair turn a dreaded task into something survivable. I’ve watched a person’s heart rate settle because a grabber meant they didn’t have to bend at the waist six times in five minutes. I’ve observed the difference between someone venturing into the world with a rollator versus staying home for the third week in a row, telling themselves maybe tomorrow, maybe next time. And I’ve heard, quietly, the grief that comes with delaying these tools for too long. So many people wait. They wait because someone told them (explicitly or subtly) that using a mobility aid is a kind of surrender, that seeking support is suspect, and that ease must be earned through suffering first. But the people who wait until they’re on the edge of collapse to reach for help often land in deeper crashes. The people who allow themselves tools earlier (who give themselves the grace to make life easier) preserve their energy, reduce symptom severity, and regain access to things they care about. It’s not magic. It’s math. Less strain = less crash probability. Less autonomic overload = more stability. More stability = a life with fewer trade-offs.

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From: "The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

onelifelivedwell.substack.com/p/the-quiet-...

#chronicillness #Spoonie

Chronic illness can change how we communicate.

Join our March Support Group:
Tues, March 3
1:00 pm MST
Topic: Communicating Needs with Confidence

We'll talk about expressing needs, feeling heard, and navigating relationships.

Register: https://batemanhornecenter.org/events/

A Walk For M.E - Lets Raise Money For M.E/CFS. I am going to be walking around Ireland’s West Coast and Northern Ireland’s North Coast. To raise money for of people struggling with M.E

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‪Read Lee’s main fundraising page here including information on his brother’s struggles with ME (he eventually became severe and passed away)‬

‪https://www.awalkforme.com/‬

‪#severeme #pwME‬ #severeme #CFS #MEcfs

www.awalkforme.com

Email your MP about Long Covid Awareness Day

ME & LC and other overlapping illnesses need much better awareness and advocacy in parliament. Around 700 people have written to their MP in the past two days using this super quick (amendable) template from Long Covid Kids. longcovidkids.eaction.org.uk/awarenessday