Some #MillionsMissing photos. Overdid it and have one more day to go. So will be sustainably adding alt text Thurs or Friday - with sincere apologies as to capacity to not get it all up at once.

Closing out Maryland's second day on the Hill, we were at the office of @alsobrooks.senate.gov meeting with staff And talking up the NIH ME/CFS Research Roadmap

I didn't have the energy to post about #WorldMEDay yesterday because getting to the #MillionsMissing demonstration took everything out of me. But it was incredibly moving to be able to gather with people in person. As others have said, I feel like I am one of the lucky ones

I don’t think even most advocates and pwME understand how profoundly limited in options you are at extremely severe. All coping mechanisms make your situation worse in the long term. All you can do is lay completely still in the dark all alone with all senses blocked, not thinking anything. 1/3

2004, I got Mono from my "first love". Then on 8/24/2018, during a work week I was LOVING, at the peak of my career, in my prime, it ALL changed. I'm missing from my life. I'm one of the Millions Missing. Phuck MEcfs.

Oops, I almost forget to make a post for #WorldMEday. For me, #mecfs means living a double life: there’s a version of me who can sometimes go places and do things, and appears vibrant from the outside - but before long she runs out of time, and turns back into a vegetative couch-dwelling creature. 🧵

🧵 5/5 I am not a poet to write about this disease, and I am a poet writing about this disease. #MillionsMissing #FrailAndFurious millionsmissing.org #pwME #LongCovid #MECFS

🧵 1/5 Not a Poet I am not a poet to write about this disease: It is the least interesting thing about me. It takes my health and time, my energy and money. I begrudge it my precious words.

I joined @meactnet.bsky.social on the steps of the Department of Health and Human Services yesterday to fight for Medicaid access/expansion and against harmful work requirements that will make our community sicker. #MillionsMissing

Join @meactnet.bsky.social's campaign to protect Medicaid access for people with ME and Long COVID (and all members of the disability community): actionnetwork.org/petitions/fr... #MillionsMissing

“Imagine you must operate on 15% energy, at your best. If you go into the red it can take days, weeks or months to recover, and only to 15%.” Úna, Ireland, living with myalgic encephalomyelitis since 1982

#millionsmissing There are millions of us so sick we can't leave the house, or those that can can't do much else. Mecfs/long covid is beyond "chronic fatigue". Its deep exhaustion,pain, neurological struggles. The slightest "overdoing it" can make it much worse,sometimes permanently #frailandfurious

Today, May 12, 2026, is #MEAwarenessDay. Like quite a few years, I hadn't done anything for today - until just now, when I went through my photos since the last #MEAwarenessDay...and there were only 29. I put them all into this collage. You'll note that mostly I am in bed, with my kitty nurse Piper.

You will see me in the post below and, yes, I am medically frail like millions of pwME. I live between bed and bathroom, fearful that any life event could disrupt my tiny life. If we didn’t laugh a bit, we would have to cry. But after a laugh, make sure that you have signed the letter to HHS below.

We showed up in front the U.S. Department of Health and Human Services today, joined by Dr. Stephanie Haridopolos, Principal Deputy Assistant Secretary for Health - Policy and Chief of Staff/Senior Advisor to Office of the Surgeon General. #MillionsMissing #FrailAndFurious #WorldMEday

A quick behind-the-scenes video from Scientific Director, Jaime Seltzer @exceedhergrasp1.bsky.social from HHS! It has been busy and successful! More info coming soon! And a huge thank you for all the stories & shares we are seeing! You are making a difference! #MillionsMissing #FrailAndFurious

Thank you so much for this generous offer! Everyone check out the offer of matching funds below! Our fundraiser and all the info you need: www.meaction.net/millionsmiss... #pwME #MillionsMissing #MyalgicEncephalomyelitis #MECFS #LongCovid

Today is #MEAwarenessDay and while I spend every day painfully aware of the limitations this disease imposes on me, perhaps you haven't thought about it. Today is a great day to learn. Anyone can be affected by ME, and I'm one of those #MillionsMissing.

Did you know May 12th is Florence Nightingale’s birthday & #MEawarenessDay? It’s not a coincidence: watch my vid &find out why… (I have #SevereME so this took a lot of energy to make, pls share🙏 I’m also homeless if you want to help!➡️ linktr.ee/EthyricalArt... ) #MEawareness #pwME #MillionsMissing

I’m wrapping the ME community in a big, gentle hug today. We fight so hard. And today we’ll be outside the Department of Health and Human Services fighting for Medicaid access and against work requirements. More to come.❤️ #MillionsMissing @meactnet.bsky.social

It's #MEAwarenessDay, so I've written a piece sharing my 11-year lived experience of this devastating illness. This is deeply personal, so please be kind, but if it helps even just 1 person understand MECFS a little better, my work is done. #pwME #MEAwarenessDay2026 tetisheri.co.uk/living-with-...

In the moMEnt - 31 years ago. A car accident. A virus. Genetics. The #MillionsMissing all have their story, what life was like, what has been lost, and what still persists.

Today is ME Awareness Day. This picture shows my reality better than I can achieve with words at the moment. Please see us. #MillionsMissing

It’s Millions Missing, ME Action’s day of ME/CFS advocacy, and fittingly, I’ve been too sick and tired to write about it until now. Life with ME/CFS is a life of limits. #millionsmissing @meactnet.bsky.social

I'm one of the "Frails" in this reel. I have #MECFS. There is no FDA-approved treatment. The CDC has been gutted. Experts fired. And now Medicaid work requirements threaten to take my healthcare. Call me frail but don't you dare take my healthcare.

We are at HHS today for #MillionsMissing to educate about what's at stake for disabled people under #Medicaid Work Requirements. HHS is expected to finalize its guidance to states on "medically frail" exemptions by June 1. https://www.meaction.net/savemedicaid#MillionsMissing#Medicaid #FrailAndFurious #disability

ME/CFS is a seriously disabling condition. Medical education is lacking in most countries. Patients are denied the care they deserve. Consequences are significant. Share the World ME Alliance's Medical Education Hub https://ow.ly/7vHP50YXJOi #EducateME https://ow.ly/7vHP50YXJOi

Call ME Frail but protect our healthcare. ME must be classified as a “medically frail” condition. Medicaid work requirements threaten to harm our community unless ME/CFS & Long Covid are put into this category of listed diseases. www.meaction.net/savemedicaid #FrailAndFurious #MillionsMissing

#MEAction met with four Congressional Offices today alongside #NotJustFatigue to discuss funding the ME/CFS Research Roadmap via appropriations. We still have 8 more meetings with Congressional Members to go! #MillionsMissing #pwME #MECFS #LongCovid

Tomorrow is #WorldMEDay #MEAwarenessDay and in person #MillionsMissing at HHS! Our virtual action goes from May 9th-16th. Take action toolkit: bit.ly/MM2026toolkit Thanks to @hospmom.bsky.social for sharing this pic. (& designing Tees that benefit #MEAction - www.bonfire.com/store/jessne...) ⬇️

The advocacy we’re rolling out is phenomenal & can only be done with your support! https://millionsmissing.funraise.org #MEAction is meeting with HHS to fight for Medicaid & we’re meeting w/ NIH to discuss funding for the ME/CFS Research Roadmap. Then Congress alongside #NotJustFatigue!

Fun ME/CFS shirts for Millions Missing May: bonfire.com/store/jessneedstorest/ with #MEAction being the sole beneficiary! Some of these slogans were available in the @meactnet.bsky.social shop, but had to be moved out to make space for Frail & Furious merch.

I made this video for ME Awareness Day last year to illustrate how much my life has shrunk since I got sick. I am grateful every day for all I still have and can do. I also miss my old life, where I could be upright for 14 or more hours a day instead of one or two today. @meactnet.bsky.social

Listen to Charley Kakel’s short story “PenPals” in honor of #MillionsMissing. https://www.meaction.net/penpals#MillionsMissing Charley’s wife, Lauren, has severe ME. Charley began writing letters around the experience. This excerpt is from a letter to Emily, a friend to Lauren when in the hospital.

CoRy the Cat here to go over the facets of MECFS, according to CDC of 2026... seriously? The #MillionsMissing have something to say about this. Join us millionsmissing.org or learn more @meactnet.bsky.social No ai was used. Character Model - @princedouglas.bsky.social

"Walk On By" by R.M. Carlson. Shared in honor of #MillionsMissing. Carlson has lived with moderately severe ME/CFS for 3 years. We are medically frail & we are furious at the dismissal by systems meant to serve, treat, & protect us. Learn more: millionsmissing.org#MillionsMissing #FrailAndFurious

Join us. Speak up. Frail and furious is our year-long campaign to protect Medicaid access for people with ME, Long COVID, and other disabilities. The time to act is now. Learn more at millionsmissing.org. #MillionsMissing #FrailAndFurious #Disability #Medicaid #MECFS

Press Alert: #ME/CFS and #LongCOVID communities are gathering at HHS on May 12th to urge policymakers to exempt our communities from Medicaid work requirements. Read the press release: 4a6ff496-ce8b-4c52-93d2-15f9b79bd151.usrfiles.com/ugd/4a6ff4_5... #FreakinFrail #ProtectMedicaid #Medicaid

Love, heartbreak, perseverance, rock & roll…this story has it all! Charley Kakel shares his beautiful short story “PenPals” with us in honor of #MillionsMissing. Charley’s wife, Lauren, has severe myalgic encephalomyelitis (ME). Print & audio version + interview: www.meaction.net/penpals

The most severely ill people with ME have nowhere to go, no treatment, no ward, no NHS service. They are dying and they need help. They need a specialised service to be commissioned now!

Okay, We Get It ... You’re Sick By the time many of us finally understand what is happening, we are already too sick to do the work of being sick. Read why visibility matters. #MECFS #MillionsMissing #ChronicIllness open.substack.com/pub/chronict...

This poem speaks to the immense losses and grief of ME and Long COVID, that all but snuff out last embers of dreams. And to dreams still faintly burning. #MECFS #LongCovid #pwME #poetry #disabledpoet #millionsmissing #bedbound

"Unremarkable Findings" A poem in honor of #MillionsMissing by R.M. Carlson. ©2026 Carlson has lived with moderately severe ME/CFS for three years. Learn more about myalgic encephalomyelitis (ME, ME/CFS) at meaction.net. #FrailAndFurious #MEAction Network

May is #MECFSAwareness Month and as national nonprofits in the US we are dedicated to promoting education & understanding of this devastating disease. Whether you're an individual or org, feel free to join us in adding the tag #UnitedForMe to all your ME-related posts this month.

"My person is still missing" #FrailAndFurious Kyie-Inn Blue shared this #MillionsMissing post with us so we could share it with you! It is a great example of a photo & a short sentence or two about why you are participating. Remember to tag @meactnet when you share! millionsmissing.org#FrailAndFurious

One week until May 12th - #MEAwarenessDay & #MillionsMissing. The week is May 9- 16. Your story matters! Resources & prompts in our toolkit: https://bit.ly/MM2026toolkit#MEAwarenessDay#MillionsMissingWe will soon be sharing sample posts created by volunteers to help get us all started! #FrailAndFurious #pwME

Happening now on our Instagram page! @meactnet

SO MUCH IS HAPPENING NEXT WEEK! - HHS installation for #MillionsMissing - Congress meeting with #NotJustFatigue for roadmap - NIH director meeting with #MEAction - TELL YOUR STORY! See our toolkit here: docs.google.com/document/d/1... #pwME #FrailAndFurious #MEAwareness

It is great that there are so many global #MillionsMissing events happening! We are adding the events to our page here: https://www.meaction.net/millionsmissing26-global#MillionsMissing Send an email with a link to [email protected] so we can add yours! We are so excited to see so many ways to take action!