ME/CFS affects ~9 million Americans. There are no FDA-approved treatments. We need medical research funding to change that. Today advocates are asking Congress to change that - join us! It takes 5 minutes: solvecfs.quorum.us/campaign/157943/ #MECFS #MEAwarenessHour

ME/CFS affects ~9 million Americans. There are no FDA-approved treatments. We need medical research funding to change that. Today advocates are asking Congress to change that - join us! It takes 5 minutes: https://ow.ly/2hKo50YySls #MECFS #MEAwarenessHour Solve M.E. #MEAction Network

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

Today for #MECFSAdvocacyWeek: make your voice heard at the federal level. This is our most time sensitive action! 1. Contact your reps: solvecfs.quorum.us/campaign/157943 2. Share our posts. Ask others to join in! tinyurl.com/MECFSFederalAdvocacyDay #MECFS #pwME #MEAwarenessHour Solve M.E.

US ME/CFS friends, @solveme.bsky.social & @meactnet.bsky.social have a tool up to facilitate emails and calls to your Members of Congress—including asking for at least $50 million to fund the ME/CFS Research Roadmap. If possible, it’s important to do this today as the House has a deadline at 6pm!

Just finished up our second day of #AdvocacyWeek with @solveme.bsky.social's Monique Wike! Want to know what's up each day this week? Consult the handy-dandy two-pager here: canva.link/mecfsquickst....

We have been asked to share this fundraiser for members of our community in need. Rachel (moderate to severe ME) & caretaker Julian are living in an unsafe, abusive home. They need to be able to move & pay for medical care. gofund.me/bddb5c10a Our policy: docs.google.com/document/d/1... #pwME

Day 2 of ME/CFS Advocacy Week w/ Solve M.E. & #MEAction Network Write your state's Patient Safety Agency. Optional community call - 3 pm ET. 1. Access state guide 2. Write email using template 3. Log in tracker All links in the quick start guide: https://ow.ly/6ZN350Yycp6

The ME/CFS Advocacy Week Kickoff Call just ended. @solveme.bsky.social will be sharing the recording! The 2 main things to know: 1. Register to participate & everything you need will show up in your inbox. tinyurl.com/MEActionAdvo... 2. Save this quick start guide. www.canva.com/design/DAHEr...

ME/CFS Advocacy Week 2026 starts today and it's not too late to join! Solve M.E. & #MEAction Network are building the case to make ME/CFS part of standardized medical education. Register: https://tinyurl.com/MEActionAdvo2026#MEAction Virtual kickoff call today at 12 pm PT/ 3 pm ET! #MECFS #pwME #MedEd

Long COVID affects ~5.8M children, more than asthma, and is often missed or dismissed. It’s not just fatigue; it’s loss of function. This #LongCOVIDAwareness week, we’re sharing resources + education. Watch full session here: https://youtu.be/no1a1A4tMfw

Before #LongCovid made her too sick to work, Elle Seibert was Solve's Registry Data Manager. Today, she & other advocates are urging the LA Board of Supervisors to create a Long Covid task force. Watch: https://www.nbclosangeles.com/news/local/la-county-long-covid/3862243/#LongCovid#LongCovidAwareness

Are you experiencing post-exertional malaise: flare of symptoms and/or appearance of new symptoms after exertion, often delayed after triggering event? See our pacing guides: Adult, Pediatric w/ @longcovidfam.bsky.social & clinician w/ @patientled.bsky.social. www.meaction.net/pacing-and-m...

Really excited about this approach to Advocacy Week and looking forward to taking part with @meactnet.bsky.social and @solveme.bsky.social!

Advocacy Week 2026 starts on Monday - March 23rd! Solve M.E. & #MEAction Network partnered to work with the systems that shape what medical providers in America learn! Register here: https://ow.ly/OvhM50YvA5Y Check out our NEW Participant Toolkit: https://ow.ly/9uOZ50YvA5Z#MEAction #pwME #MECFS

Sharing the request from @madelinenerd.bsky.social for people to email a new source to help get her story (and the story of ME) told. There is an email campaign template to use. Attention especially to those in Canada. #pwME #MECFS #MyalgicEncephalomyelitis

We must protect voting rights for people with disabilities and all citizens! The Senate begins consideration of SAVE America Act TODAY! Sample script/email to contact your senator by @autisticadvocacy.org (ASAN): autisticadvocacy.org/2026/02/save... Simple email: action.aclu.org/send-message...

To mark International Long COVID Awareness Day on March 15 From Kornelia Paulsen (who no longer seems to be on social media) #LongCovid #PASC

"Immer noch nicht besser?" In meinem neuen Blogpost schreibe ich darüber, wie es sich anfühlt, wenn eine Krankheit nicht nach Wochen oder Monaten verschwindet – sondern einfach bleibt. longcovidonline.blog/2026/03/15/i... #mecfs #longcovid

This Long Covid Awareness Day let us remember the millions who've been disabled by the virus. The people who've been forgotten and left behind. The folks who have to hide their diagnosis because of the stigma attached to it. You think you don't know anyone with Long Covid? I promise, you do:

It’s #LongCovidAwareness Day. Especially to non/not yet affected folks, please take 3 minutes to watch & sit with what #LongCovid stole from us. Then multiply each of these losses by millions of people around the world 💔

It's #LongCovidAwarenessDay & co-incidentally my 4th anniversary of #LivingWithLongCovid. Good news: every month I get that little bit better. I am the Queen of pacing! Bad news: there is no cure, no treatment, just patience. Sending love & spoons to all my fellow #ME/CFS #LC friends today.

Athena is a Marylander disabled by Long Covid. She's faced medical &racial discrimination- & been a fierce advocate. None of us should have to take our insurance problems to the MD Court of Appeals to get coverage while dealing w/serious cardiovascular damage, excruciating pain &crushing fatigue.

For #LongCOVIDAwarenessDay, share the impact COVID on all ages, contributing to ~400 million Long COVlD (LC) cases & growing. Fight for LC representation, inclusive treatment and research, and government support by using our Health Justice Toolkit! To start: #MaskTogetherAmerica

#LongCOVIDAwarenessDay Vancouver! Long COVID continues to break our hearts, over 6 years on. Thank you organizers and @cancovsoc.bsky.social for marking today with rallies in 4 different cities across Canada @longcovidcan-co.bsky.social

As a physician, Long COVID taught me humility.
As a patient, it showed me how harmful dismissal can be.
 To those living with Long COVID: you are my inspiration to listen better, believe sooner, and advocate harder. #LongCovidAwarenessDay #LongCovid #Physiatry

Lots of great resources gathered here! Our Pacing and Management Guides have been helpful! We have our original pacing guide, the pediatric pacing guide (with @longcovidfam.bsky.social) and clinician pacing guide (with @patientled.bsky.social). + Support resources for #pwME #pwLC & caregivers.

Today is #LongCovidAwarenessDay. It's a disgrace that it's been 6 years and we're no closer to a cure for #LongCOVID. It's been 62 months and 10 days since I stepped foot in my classroom. I miss my students (my babies) 😢. Today, I allow myself to grieve the old me.

“You’re not just becoming disabled,” said Elle Seibert, 31, who has dealt with debilitating fatigue and cardiac symptoms since 2020. “You’re realizing how easily society at large and people in your life will abandon you when you cannot offer them things.” www.latimes.com/science/stor...

6 year Covidversary. The guy at the bakery thought this was a joke but it’s not 💔 #LongCovid took everything. My career, marriage, ability to stand, move, think, make art, maintain friendships, be an aunt/daughter/mother, my beloved forests & mountains & waters, my faith in humans, every last dream

Before their Covid infection, our members were free to choose how they used each heartbeat. Now, #LongCovid limits what they can use each beat for. The change from before to after is obvious #LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts /4

Today is #LongCovidAwarenessDay and--once again for the cheap seats--ANYONE who's had Covid, particularly folks who've had it more than once, can develop #LongCovid. It's an insidious post-infectious illness like #MyalgicEncephalomyelitis. So far, no treatment or cure www.longcovidawareness.life

For #LongCovid Awareness Day, we’re releasing the 2026 Long Covid Fact Sheet! This is a list of key statistics about LC, using recent data to reflect contemporary risks. We hope this will be useful for journalists, policymakers, patients, & others! /1

I feel this so hard. I loved line dancing. For 35 years. It was my social life and no matter what else was going on, I always had dancing to lift me up. I also loved the two gyms I worked out at. I haven't danced for six years. I can barely walk to the corner and back, let alone go to the gym.

Before infection, our members chose how to use each heartbeat. Now #LongCovid limits what each beat can be used for. Turn your phone landscape for the best viewing experience. #LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts

We are aware #LongCovidAwarenessDay isn't the easiest of days. So instead of asking you to do anything we thought we'd give you a present! 🎁 You can download for FREE our medical binder here 👇 🖇️https://www.longcovidadvoc.com/toolkit

⚡️The power of medical education! 30% of clinicians thought Long Covid wasn't real. After 90 mins of @putrinolab.bsky.social class 0% thought it wasn't real! 📺️ Full video: On Medical Education 🖇️👇️ #LongCovidAwarenessDay

Today is #LongCovidAwarenessDay Long Covid changed my life beyond recognition. I got ill. I never recovered. Lost my job. Became housebound. I rely on others to do things for me. I lie on my bed most of the day. Watch the Guardian's short film about my life with #LongCovid 👇

For #LongCovid Awareness Day, @patientled.bsky.social has released the 2026 Long Covid Fact Sheet! This is a list of key statistics about LC, using recent data to reflect contemporary risks. #LongCOVID patientresearchcovid19.com/2026-long-co...

Long COVID leaves thousands of L.A. county residents sick, broke and ignored

Long Covid Families is proud to have successfully advocated for the inclusion of children in pediatric Long COVID clinical trials. Children cannot be left out of treatment research. Including them from the start leads to faster, more effective, and more equitable care.​​​​​​​​​​​​​​​​

Join us for the launch event - sign up now & you'll get an invite in your inbox! actionnetwork.org/forms/s4hi-s...

This #LongCOVIDAwarenessMonth, we’re excited to announce that our new oral history website is live! Featuring 100+ hours of interviews of people living with #LongCOVID. We’re building a living history of Long COVID, and bringing voices from the margins to the center. ListeningForTheLongHaul.org

It’s official! It’s #LongCOVIDAwarenessDay! Let’s do this! Trend #LongCOVID #LongCOVIDAwareness Participate in actions and events at longhauler-advocacy.org/lcamonth2026 Share your stories. Follow and elevate others. Repost, like, engage. Tag us, and others you want to engage!

To honor #LongCOVIDAwarenessDay, #MEAction Network, Solve M.E., Bateman Horne Center & Open Medicine Foundation (OMF) once again joined forces as #UnitedForME. We gathered a set of resources from our orgs to inform & empower:https://bit.ly/3Na4mX4#LongCOVIDAwarenessDay#MEAction#UnitedForME#LongCOVID #pwME

Many people don’t feel moved by disability justice because they don’t consider themselves disabled, but disability is a state we will all find ourselves in at points in our lives. The fight for disability justice should be your fight too.

We must protect voting rights for people with disabilities & all citizens! The Save AMERICA Act will be brought before the Senate NEXT WEEK. Sample script & email to contact your senator provided by Autistic Self Advocacy Network (ASAN): https://autisticadvocacy.org/2026/02/save-act/ #Disability

Help us welcome Therese Russo as our new Advocacy Manager. Therese will work with our state teams. She is a disability & chronic illness rights advocate, public health analyst, & community organizer with over a decade of experience in nonprofit and government administration.

#MEActionNC is restarting Advocacy mtgs. 1st is this Sun, Mar 15, '26, 11 AM-12 PM, EDT US. We will discuss upcoming opportunities for action, big & small. We welcome all volunteers regardless of capacity. For deets, link, call in #: www.meaction.net/event-detail... #LongCovidAwareness #MECFS

We have an update to share in our fight to protect Medicaid! #MEAction has sent a letter to State Medicaid Directors explaining why ME/CFS and Long COVID are serious, complex medical conditions – and should be exempt from the new onerous work requirement. Letter: ow.ly/UmlA50YsAzf