Just learned of this website knowmecfs.org - surprised I’d never seen it sooner? Nothing new for many of us, but a great comprehensive resource in general & a goldmine for new patients, caregivers/family, etc. Detailed yet still succinct, with high quality information. #MECFS #LongCovid #pwME

PLRC co-lead @leticiasaurus.bsky.social recently presented on the state of #LongCovid clinical trials — and shared that findings from many trials remain inconclusive due to limitations in study design, most notably the widespread failure to account for post-exertional malaise (PEM).

You don’t have to be a “good” #disabled person. You don’t have to be cheerful, positive, compliant, smiling, grateful, or what they perceive as a “fighter.” You can just do what’s best for you. You don’t owe anyone the pretend role their ableism tells them you should fulfill. #LongCovid #pwME

Funding disparities like this don't just fix themselves, folks. Get in the fight with us, please!

I always take art from pwME as defiance. We're not supposed to be seen, or do things like art, yet so many of us do still manage despite it all. I love your photos and would never call them pitiful, it shows you are still human despite all their efforts at taking your humanity away.

People believe whatever makes them comfortable. In 2021 I got the devastating diagnosis of #MECFS & understood that it was likely permanent. I endured coping w/ that virtually alone, while everyone around me behaved as if I had broken my leg & would soon be better. The damage of that is irreparable.

NASA just dropped more than 12,000 photos from the Artemis II mission. It'll take me a few days to go through them all, but so far it's one stunner after another. Link: eol.jsc.nasa.gov/SearchPhotos... Credit: NASA/Artemis II Crew (h/t @jonostrower.com)

One thing people don’t realize is that even if you don’t use Medicaid—even if you never would use Medicaid—your ability to access care, and your ability to access healthcare providers like me, will be affected in some way or another by every cut or barrier to Medicaid. Nobody will be unaffected.

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

Incredibly excited to announce a new coauthored publication in Annals of Family Medicine ( @annfammed.bsky.social ): ✨"Underutilization of Pharmacologic Therapies for #MECFS Prior to Evaluation at a Specialty Clinic✨ This study has been chosen as an early-access publication! 🧵🧪

Chengdu University researchers found PEM may arise when exertion sparks a loop of poor mitochondrial energy, immune activation, and brain inflammation, turning mild effort into lasting fatigue and brain fog. www.frontiersin.org/journals/imm...

Lumia 2 wearable tracker launched today. Not sure whether or not to take the plunge. I’m not big into health tech but this one tracks blood flow to the head, but it also looks like it only alerts via the app when blood flow gets low. (Was hoping it would beep in real time or something?) 🤔

There’s a new email list for updates on NIH’s ME/CFS work. If you’d like to get those, sign up here: eepurl.com/jEfjfs

@mecfsclinicmn.bsky.social Concert (livestream and in-person: "Rooted in Hope" Apr 26, 1–2pm CT social hour / 2–4pm concert at American Swedish Institute. Free (optional donation): givebutter.com/c/qFCf8j

It’s wild to watch myself lose function every spring compared to winter simply bc there’s a ton more noise, as well as more light, heat & humidity that my body has to constantly process. I guess my October slide is really an April slide? #MECFS #LongCovid

Incredibly exciting! One of my co-authored papers is part of a special edition on infection-associated chronic conditions in the Journal of Clinical Medicine: 🧪🧵 ✨ #POTS, #MECFS and #LongCOVID: Recent Advances and Future Direction Guest Editor(s): Svetlana Blitshteyn. ✨ www.mdpi.com/journal/jcm/...

Immune cells have a surprising role in exercise endurance www.nature.com/articles/d41...

Gentle but important reminder if you are at zero- if even the lowest level is too much for you right now, just stay with us. Self-care and rest are acts of resistance. You are important. Your continued existence is critical. We hold space for you and look forward to a day you can join in again.

#MCAS folks— The newly formed International Society for Mast Cell Activation Syndromes has a 10-min survey to learn how they can best serve MCAS patients and caregivers. Please take it, please share it! Survey: forms.office.com/e/N4RDJYVep0 Org: ismcas.org Qs: [email protected]

With #MECFS comes the loneliness of isolation, from people and places I no longer have the energy to see. But I’ve found I prefer this honest, authentic type of loneliness to that which comes from sitting across from someone who doesn’t understand me, and who has never really tried to.

📣GREAT NEWS📣 Just spoke to Hill champions: your hundreds of calls & emails are making such a difference, they've extended deadline for Senator sign-on to #FundLongCOVID Dear Colleague letter to MONDAY APRIL 20 10am ET! More @lccampaign.bsky.social details incoming, senators now signed: 1/x

Important post from Dr Todd Davenport about PEM. likeannopeningbandforthesun.substack.com/p/in-pursuit...

@openmedf.bsky.social is collecting community input on ME/CFS clinical trial priorities. I encourage folks affected by ME to share their thoughts: docs.google.com/forms/d/e/1F...

📣U.S. Action Item: #pwLC #POTS #pwME #NEISVoid we need your help! Will you contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations using our EASY low-spoons call/email tool?🧵

Florida Mayo Clinic clocks #hEDS as 255 million people, or 1 in 32 people That’s way more common than the 2019 UK hEDS/HSD study finding 1 in 500 I think clinicians will be shocked by exactly how big of a bomb Covid/Long Covid are in unveiling EDS diagnoses, now and in future

In the wake of her passing and her recent celebration of life, @loscharlos.bsky.social shares how Alice Wong taught him the power of Disability Justice and how she wielded it to bridge the hesitancy between disability, Long Covid, and COVID-cautious communities. bit.ly/4mohc12

i’m an autumn and, in recent years, a winter kind of gal. but even I can admit, despite the overabundance of lawn mowers, that there is something special about #spring in the #midwest

Working link: www.biorxiv.org/content/10.6...

A new study predicts that Long Covid will cost OECD economies $135 billion a year, due to people leaving the workforce, lower productivity, and healthcare costs. COVID is not over.

We're getting ready to send the letters from ME/CFS Advocacy Week! Make sure you sign THIS WEEK! We're asking State Medical Boards to meet with our community & support efforts to get ME/CFS questions on national licensing exams. Sign: https://ow.ly/vLAK50YzkCb Solve M.E. #MEAction Network

Klimas Lab Long COVID Study: www.sciencedirect.com/science/arti... Higher WBV linked to dysautonomia, driven by globulins & fibrinogen (not albumin/hematocrit). Strongest at arterioles → microvascular role. No symptom link. Non-POTS/non-NMH OI (largest ME/CFS subgroup) likely not included.

Anyone else have experience trying this? #MECFS #LongCovid #pwME #PEM

Over two years ago, the magnificent Beth Mazur ended her life while visiting me. I miss her. www.nytimes.com/2026/04/03/s...

New paper published today! ❤️ Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through a Point-of-Care Clinical Algorithm 🧪 🧵 www.mdpi.com/1660-4601/23...

Thrilled we have this new Comment out in @thelancetinfdis.bsky.social, arguing that to give Long COVID scientists more incentive to incorporate patient expertise throughout the research process, LC papers should all be subject to pre-publication review by patients. Free to read w/registration!

I like the International Consensus Criteria’s definition of PEM (termed PENE there) for specifying the features that make PEM distinct—particularly noting that it usually lasts at least 24 hours. So that’s different from types of PESE people can sleep off and wake up feeling recovered the next day.

My Uber driver goes “Ma’am, men will never approach you with all those face barriers.” I was like “Thank you! I know! It’s great advice, share it with every woman you know!” And he goes “Oh, I, uh, didn’t mean it as a compliment.”

Long COVID affects millions of people worldwide. The experiences shared here are just a glimpse into what daily life can look like for those living with Long COVID. If you’re living with Long COVID, we want to hear from you. Fill out the survey linked below to share your story and have it featured.

I’ve lost all patience for the discussion about how conflating #LongCovid w/ #MECFS is harmful. If you go to the doctor with signs of lung damage, heart failure, diabetes, etc it’s probably going to get recognized, bc those things are common & well understood. There’s a typical plan of care. 1/

Nature: 'Long COVID disability burden in US adults' 'With chronic conditions like Long COVID rising, disability burden merits greater consideration in funding decisions, as does biological sex.' www.nature.com/articles/s43...

A great article in English from 2024 on Post Exertional Malaise (PEM) from ScienceNorway. #ME/CFS #LongCOVID www.sciencenorway.no/me/victoria-...

As Covid continues to spread largely unchecked, the # of people affected by ME/CFS—commonly triggered by viral infection—keeps climbing. If you’re not yet familiar w/the destruction ME/CFS wreaks on people’s lives, I strongly recommend this Sundance-premiered, Oscar-shortlisted doc.

In case you can’t make it to an in person No Kings rally tomorrow, you can sign up to attend a virtual one #WeSayNoKings www.mobilize.us/nokings/even...

Today for #MECFSAdvocacyWeek: add your name to our letters to State Medical Boards and Chief Medical Officers. Community sign-on: tinyurl.com/StateMedicalBoardForm Clinicians: tinyurl.com/ClinicianSignOnForm Share our posts: tinyurl.com/MECFSThursdaySocials#MECFSAdvocacyWeek

Today for #MECFSAdvocacyWeek: make your voice heard at the federal level. Contact your reps: solvecfs.quorum.us/campaign/157943 Share our posts: tinyurl.com/MECFSFederalAdvocacyDay#MECFSAdvocacyWeek #MECFS #pwME #MEAwarenessHour

Ms. Magazine: Mifepristone Could Treat Endometriosis, Some Cancers, Depression & Chronic Illness—If Politics Didn’t Interfere “We’re using mifepristone..to reboot..adrenal axis.." Klimas says "She also sees potential..to treat chronic fatigue syndrome, long COVID.." msmagazine.com/2026/01/21/m...

Alice Wong’s Celebration of Life, March 25 from 11am-1pm PT. Links and info:

Today's action for #MECFSAdvocacyWeek: write to your state's Patient Safety Agency. Pre-written template ready. Takes ~20 minutes. https://canva.link/mecfsquickstartguide#MECFSAdvocacyWeek

🚨A pwME in Poland (not a minor) has been sectioned at the urging of their parents. Their friend is working to help get them out and could use recs for Polish lawyers knowledgeable in these spaces or help from other PwME from Poland. If you can help, I’ll connect. #MECFS #LongCovid

Today @thesicktimes.org: @maddidellplain.bsky.social dives into how people with Long COVID experience pregnancy. There's relatively limited research on this so far, but we can learn from ME and more studies are underway. thesicktimes.org/2026/03/24/i...