Why This Campaign Matters 21M+ Americans are living with #LongCOVID — and, right now, there's a critical window to fight for the funding they desperately need. Help us send a powerful message to the Senate that we are still here and we need help NOW. #FundLongCOVID /end

The Senate letter centers patient needs: 1) monies are directed to drug trials, biomarkers, & therapeutics AND 2) LC-related conditions like dysautonomia, POTS, & ME/cfs will be included in research. Let’s remind leaders that THESE are the interventions we want and need. 8/X

If you have additional spoons OR are outside the U.S.… you can also post on socials, tag, & thank Senators Markey (D-MA) @markey.senate.gov, Kaine (D-VA) @kaine.senate.gov, Duckworth (D-IL) @duckworth.senate.gov, & Young (R-IN) for their continued support of the #LongCOVID community. 7/x

3. 📢 Share this thread and these tools with friends, family, and fellow advocates so they too can use them advocate to #FundLongCOVID. Tag those you especially think may want to see it so the algorithm doesn’t prevent views. 6/x

2. ✉️ Email your Senators with the same ask using this handy LCC email tool tinyurl.com/LongCOVIDEmail which provides an email template & sends directly to your 2 Senators asking them to sign on to the Dear Colleague Letter and #FundLongCOVID in 2027 Appropriations. 5/x

#pwLC #POTS #pwME #NEISVoid in the U.S. – Here are THREE WAYS You can help 1. 📞 Calls to Senators' offices make a BIG impact & this handy LCC call tool automatically identifies your 2 senators based on address tinyurl.com/LongCOVIDCall Letter deadline is COB Friday April 17th 4/x

BUT we need more Senators to sign on to the FY 27 “Dear Colleague” appropriations letter. ANY of the 100 U.S. Senators can support this request. EVERY U.S. patient can call or email their Senators to highlight the need to #FundLongCOVID in 2027 appropriations. 3/x

Senators Markey @markey.senate.gov, Kaine @kaine.senate.gov, and Duckworth @duckworth.senate.gov are once again championing a FY27 "Dear Colleague" letter calling for over $210 MILLION in appropriations for research funding at NIH, ARPA-H, and AHRQ clinics #LongCOVID & related conditions. 2/X

📣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?🧵

#MEAction’s Advocacy Director, Ben HsuBorger, will join a national webinar hosted by The Grassroots Project to discuss how the H.R.1 funding bill passed by Congress will affect disability communities. Join on April 13th at 2 pm ET. See more & register: https://ow.ly/474550YH8kV#MEAction’s#disability #pwME

Recently, I've been repeatedly tagged by people who mistakenly believe my account belongs to astronaut Christina Koch. I'm not her. I can barely make it to the next train station, let alone into space. I'm severely ill with #MEcfs #POTS #CCI #MCAS and housebound most days.

Friends, please take a moment to sign on here (if in the US). You can't imagine how little doctors know about this rapidly-growing, debilitating illness. Their ignorance regularly causes active harm. Please help make sure they have some basic information about ME/CFS. I appreciate the favor. 🧡

Easy action. Only takes a few minutes. State medical boards need to take #MECFS seriously!

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

All you need to do is co-sign to send your support for better medical education for ME/CFS. That’s it! Super fast action.

There can be a kind of rebound or temporary dysregulation that shows up as restlessness or akathisia. For people with more sensitive nervous systems, that effect can feel more intense or last longer.

In some cases, this can happen because LDN interacts with the opioid system, which is closely tied to dopamine signaling and nervous system regulation. After being on it for a longer period, the body can adapt to those changes, and when it’s reduced or stopped.

As usual, @julierehmeyer manages to capture things so beautifully here as she reflects on the loss of her dear friend with #MECFS. The feelings and thoughts so perfectly expressed in this piece by Julie are familiar to so many in the community: so many www.nytimes.com/2026/04/03/s... 1/

therapies and answers. Beth was a giant in this space, and reading this piece today reminded me of how much we have lost with our unacceptable lack of curiosity, rigor and action in investigating these diagnoses. Most days I'm angry. Today I feel I've not been angry enough. /end

coming is not even the point anymore once suffering reaches a certain level. To lose just one person in this way due to decades of inaction, denial and fundamental misunderstanding of these illnesses should be unconscionable to all of us. To lose as many as we do, day after 4/

Facts. Before my diagnosis I tried to boost my health by exercising more, like we're all told to to do. I trained diligently, and a few weeks out from a half-marathon I crashed. It's taken 3 years to be able to walk for 20-30 minutes max. (I'm a "mild" case.) #mecfs #disability #chronicillness #cfs

This #MillionsMissing, we are #FrailAndFurious! Injustices are happening worldwide because ME is not taken with the seriousness we deserve. Let's come together to show the world how devastating this disease is. Join the fight: millionsmissing.org#MillionsMissing#FrailAndFurious#pwME #LongCovid #MECFS

This #MillionsMissing, we are FRAIL and FURIOUS! Injustices are happening to people with ME & Long COVID around the world. Myalgic encephalomyelitis (ME) is not taken with the seriousness we deserve. More info: www.meaction.net/millionsmiss... Video introduction: youtube.com/shorts/T3amp...

We have trialled several devices in pilot trials for functional measures to test patient outcomes (blood pressure and heart rate wearables). We are currently recruiting over 1000 #ME/CFS patients to test FUNCAP as a “right now” measure of ME/CFS patient severity. We developed a novel symptom tracker

At the #NIH #MECFS Conference today! Presenters from those involved in the Collaborative Research Centers: Cornell, Columbia, ICanCME (Canadian network), RTI and NIH staff.

Early #MECFS career investigators in Europe! The Young EMERG Symposium will be held May 25-26, 2026 at the Wellcome Genome Campus, Cambridge, UK. Learn more here: youngemerg.com/yemerg07.shtml If you're not an early career investigator or not in #MECFS, please share with your networks! 🧪

Have you tried Low Dose Naltrexone (LDN) for Long COVID, ME/CFS, or other chronic illness symptoms? Please share in comments. According to real-world data, 57% of RTHM Platform users who had taken LDN reported improvements, and 38% of those described the benefits as significant. www.rthm.com

Having #ME/CFS means pushing up an invisible - to others - boulder, day in, day out while the incline’s steepness changes and your body central immuno-metabolic system malfunctions and punishes you for every simple life activity. #PEM≠fatigue #PEM #pwME #ICDG93.3 #ICDG93.32 #ICD8E49

#GreatestMEdicalScandal #JohnVsJonVsME @lastweektonight.com @weeklyshowpodcast.bsky.social @johngreensbluesky.bsky.social @hankgreen.bsky.social

I have never met a more lonely community than that of #MECFS, #LongCovid and other #PAIS. Not even the deeply traumatised community of activists in Egypt i worked with and who were entirely demoralised by 2013, were as atomised as #PAIS patients.

Email Congress for ME/CFS funding! Prescripted—just takes 1 min! Can personalize it if you like, but it’s not required. There’s an option to follow up w/phone calls. My ME is so severe that I can’t speak, but calls make even more impact, so I’m v grateful to anyone willing to lend me their voice 🤍

Would love to see @rebeccasolnit.bsky.social talk to @binitakane.bsky.social @mayadusenbery.bsky.social @meactnet.bsky.social about #LongCovid #ME #POTS #IACC and why #GreatestMEdicalScandal is a feminist issue 🙏🏻

BBC Wales Today. Carer and campaigner Rob Messenger, who has two children with #MECFS in their 30s, says there are no specialists to turn to and describes care for Severe and Very Severe ME in Wales as a ‘desert’.

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....

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

Friends with ME/CFS: Today’s advocacy effort aims to create a paper trail of bad ME care, so you're sending a complaint to a regulatory body in your state. It’s almost entirely scripted for you—just add a paragraph about your experience seeking ME care, then follow instructions to submit it!

🚨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

PolyBio Research Foundation is keeping you in-the-know with our newly launched newsletter! Sign up for our mailing list to get direct project updates to your inbox & meet the team that drives our research forward. polybio.org/newsletter/

One of our new initiatives at The Rumpus is a Spanish language section, El Alboroto, where we publish original Spanish prose and poetry. If you write in Spanish or know people who do, please send them here to read our guidelines and submit their work. therumpus.submittable.com/submit/35215...

Philly Philly representin’ this weekend! 👏👏👏International LC Awareness Day (March 15th) scrolling atop the @pecoconnect.bsky.social building! Check it out, if you are local.

What's up with the GPs in Australia? They keep promoting GET as if the PACE trial were actually not a fraudulent, discredited piece of crap! virology.ws/2026/03/09/t...

🚨 Nevra's situation is urgent. She can't afford both rent and hospital bills. 🚨 Please donate if you can, and share this post to spread the word. PayPal: paypal.me/SaveLizNevra GoFundMe: gofundme.com/f/save-nevra #pwME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #mecfs

The Beginning Comes After The End Don’t miss @rebeccasolnit.bsky.social in conversation with @billmckibben.bsky.social, hosted by @thirdactorg.bsky.social Tuesday, March 10 at 7:00 pm ET RSVP to attend:

🚨 Nevra's situation is urgent. She can't afford both rent and hospital bills. 🚨 Please donate if you can, and share this post to spread the word. PayPal: paypal.me/SaveLizNevra GoFundMe: gofundme.com/f/save-nevra #pwME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #mecfs

‼️Nevra Hospital Update. Urgent Funds Needed ‼️ Nevra has very Severe ME and can no longer eat or drink. She has an infection that has travelled upwards. She needs 3 IV antibiotics for 5 days, keeping her in hospital longer. Scans revealed a fecal obstruction & a compression in the celiac artery.

🚨 £400 match funding alert!🚨 All donations this month will be DOUBLED until £400 is reached. £10 becomes £20. £25 becomes £50. Let's unlock the full £800 together! Donate/share: paypal.me/SaveLizNevra & gofundme.com/f/save-nevra #VerySevereME #pain #food #water #pwME #MillionsMissing #MECFS

Please don't stop boosting my recent posts #SevereME #pwME #food #pain #water

Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention. Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.

From his bed, Sebastian creates Drum & Bass 🎶 Two years ago, he was active, sporty, and highly driven. Today, he is around 90% bedbound. He works on music when he can & his work has reached over 1.5 million streams on Spotify. Read Sebastian's story👉 https://ow.ly/n2KZ50YpIqX.