The thing about ME/CFS patients is that it's definitionally difficult for them to advocate for themselves. They just... vanish from society. Which is why it's up to the rest of us to spread the word. To learn more or donate to research, some good orgs are: www.omf.ngo batemanhornecenter.org

With the arrival of Long COVID—a closely related condition—doctors are finally becoming more aware (and less dismissive) of ME/CFS. But there's still so little research, and very little effective treatment, despite a quality of life that can be—as I saw one doc call it—"akin to late-stage AIDS."

It's Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) day of awareness. For the last 8 years, my wife has been bedbound. She can't bathe, can't watch TV, can't get herself to the bathroom, often can't speak. There are MILLIONS of people with her condition—but you never hear about it.

If you’re not affected by ME, I challenge you to look through the hashtags this #MEAwarenessDay & choose one post to share on behalf of the #MillionsMissing. We desperately need healthy allies to get angry for us & advocate for research & social support 💙 #MECFS #WorldMEDay #GreatestMEdicalScandal

Thank you for all you do, Adam. Using your own limited energy to create these videos is a gift to the world - not just the #MyalgicEncephalomyelitis community 💙 -signed, someone w/ #SevereME #pwme #medsky #GreatestMEdicalScandal #MEawarenessmonth #chronicillness #FrailandFurious #MillionsMissing

@amnestyuk.bsky.social @jolyon.goodlawproject.org Successive governments worldwide have known for decades. UK government is complicit in the systematic abuse of #pwME Please help us, we need all the support we can get; we are too sick to fight for ourselves! #SevereME #GreatestMEdicalScandal

A repository of selected ME/CFS and Long Covid documentaries & shorts. Plus some current affairs reports, art films and archival footage by @nessau.bsky.social skywriter.blue/@nessau.bsky... #MECFS #LongCovid #GreatestMEdicalScandal #MillionsMissing #May12th

“The injustice of it, I couldn’t believe it.” Former Team GB rower @oonaghcousins.bsky.social talking about the #MECFS “scandal” where patients were told they were deconditioned and needed Graded Exercise and CBT. It is the “opposite of what they needed” and that legacy still runs “super deep”.

Nevra's struggles to access basic services in Pakistan are compounded by her status as a victim of DV. Without continued funds, she risks being returned to DV.

Freedom is not free- a poem by Nevra Please donate/share to help Nevra access lifesaving medical care and rental housing. paypal.me/SaveLizNevra gofundme.com/f/save-nevra #SaveLizNevra #MECFS #pwME #ChronicIllness #severeME

💙🩵 Save Nevra - May Update 🩵💙 Please donate, share this post, engage in the comments! paypal.me/SaveLizNevra gofundme.com/f/save-nevra #SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing

Nevra urgently needs funds to pay for a hospital visit for heavy bleeding. If you can, please consider donating, and even if you can't do that, please share this post 🧡 paypal.me/SaveLizNevra gofundme.com/f/save-nevra #SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing

@rebeccasolnit.bsky.social ☝️ Really important area of medical misogyny to be aware of. Patients could use your broad-minded eye and pen on this issue. ❤️

It's #BlueSunday2026! A day to fundraise for ME advocacy and the #MillionsMissing, and like every May, I will match your donations! For 3+ years I have been of this world but not in it, and this is my best hope of getting my old life back. For now, this is my day to day: hashman.ca/me-cfs/

Gentle reminder that @eha.sh is kindly matching donations this May! #MillionsMissing #pwME

This was published back in May 2020! #pwME sounded the ALARM about ignoring the grave & disabling consequences of post COVID-19 sequelae. #ME/CFS being the most serious and impactful one: www.washingtonpost.com/health/could... @brianvastag.mas.to.ap.brid.gy & our late Beth Mazur #LongCOVID #IACCs

Celebrating Blue Sunday for #MECFS with a few of my kids. Sandwich and hot chocolate for me, cookies and sparkling water for them! Donated to the emergency department project @meactnet.bsky.social

my mini tea party for blue sunday 🥰 vanilla chamomile lavender ginger tea w/ a cherry lemon doughnut cake i was going to wear my new blue dress but i had paralysis this morning so just getting this together was an accomplishment #bluesunday #meawareness #mecfs

Gathered blues in México for #BlueSunday2026 #TeaPartyForME2026 and donated what I'd pay for coffee & a treat to @meactnet.bsky.social 🦋. @rebeccasolnit.bsky.social's book felt appropriate as #GreatestMEdicalScandal is full of medical misogyny. *see www.johnvsjon.com @johnvsjonvsme.bsky.social

Happy #BlueSunday2026 #TeaPartyForME2026 ! I just donated the cost of a coffee/pastry to @meactnet.bsky.social & to mutual aid for people with ME 🩵

Thanks to my mum for getting everything ready for our family #TeaPartyForME2026 on #BlueSunday2026 (on Sun) We’re doing it in aid of @irishmecfsassoc.bsky.social www.idonate.ie/fundraiser/B... but other worthy charities are available (see the-slow-lane.com/donation-pages ) #MEcfs #CFS #BlueSunday

It's ME/CFS Awareness Day. A great day to watch Unrest, get mad, and realize that this is a common medical condition with virtually no support www.youtube.com/watch?v=XOpy...

ME/CFS is the worst. I'd heard/read about it, over the decades, along with hearing and reading that it's psychosomatic (it's not.) I don't recall any mention of it in my graduate counseling program. Now that I've had it for six years, post-COVID, I can't believe people live with this for decades.

May is #MECFSAwareness Month! With our friends at Open Medicine Foundation (OMF) #MEAction Network and Bateman Horne Center#MECFSAwareness#MEActione're promoting education & understanding of this devastating disease. Join us! Add the tag #UnitedForME to all your ME-related posts this month. #MECFSAwareness

Check out the Zolia Health Symptom Log's iOS or Android version. It is a NEW tracker for sx, meds, & other stuff. Great for seeing if treatments work, to remember when you start & stop taking meds, to follow certain symptoms. Log in seconds! Symptoms, Meds, Notes, Factors, Vitals, Events, Ratings.

The Forget-M.E.-Not collective quilt is a venue to highlight the art, lives, and stories of people living with M.E. so they may be more seen and heard. The project enables participants to represent their story of how their lives have been impacted. forgetmenotquilt.ca/participate

We are thrilled to announce that #MEAction just received a $15,000 matching grant to fund our Emergency Department Project! Every $ you give will be matched to help us reach $55k. Give here: https://ow.ly/u4Fp50YQO0T#MEAction A huge thank to our anonymous donor & all who are giving! #pwME #MECFS #LongCovid

📣 #LongCOVID Community 📣 Thank you to EVERYONE who took action over the last few days! Your phone calls & emails resulted in 14 senators signing on to the FY27 #FundLongCOVID Dear Colleague letter to Senate appropriators for over $210 million in care & research funding! 1/x

📣#LongCOVID Community📣 THANK YOU to the almost 600 folks who've emailed & called their Senators! Sunday emails & voicemails CAN move the Senate on Monday! Senate FY27 #FundLongCOVID "Dear Colleague" deadline extended to Monday AM. @lccampaign.bsky.social free, customizable tools here: 1/x

600!!! Incredible! Please keep spreading to word for people to call if they are able to help get LC appropriations funding. Details below and on LCC’s timeline.

“I #MaskUp because I don’t want to become further disabled by another infection.”—Melissa Mazur @phillyphile215.bsky.social, a first wave COVID long hauler who got sick in March 2020 and never got better. Read Interview by @MsJulieSLam.bsky.social www.instagram.com/p/DXFc5ecEcvD/

My feet touched the ground today. The last time they did was February 2023. That was the last time I took my last steps. Today, I had enough strength to sit at the edge of my bed without support, bring my legs across, and plant them on the ground for a few seconds. Then bring them back up.

A huge thank you to our community for showing up and helping us work to effect real change for our community! Keep interacting and sharing on social media. P.S. We also have tees and your purchase helps support our work. Check out our store: www.bonfire.com/store/meacti...

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.

Social Media Tips: Shares matter! Share & comment on our posts and on others using the hashtags below. Please tag @meactnet and use the hashtags #MillionsMissing and #FrailAndFurious. Feel free to add additional hashtags. Please add an image description or alt text if you can and add captions.

Level 5: Show up for in-person action. In the US, #MEAction is organizing a storytelling and art demonstration in Washington D.C., at HHS on May 12th from 12pm-2pm ET. Learn more and register: docs.google.com/forms/d/e/1F... #pwME #DC

Level 4: - Share your story on social media as a video: Take an under 3 minute video sharing your personal story. See our storytelling prompts for this year’s messaging ideas. Tag us! - Create a fundraiser for #MEAction using our site, or using Facebook or Instagram's fundraising platforms.

Level 3 alternative: Share your story to #MEAction’s story bank: If you don’t want to share your story publicly on social media or want to remain anonymous, share to our story bank. Also a good option if you want #MEAction to share your story with decision makers. airtable.com/app4hQ0Pkj28...

Level 3: - Share your story! Photo + your story. See our storytelling prompts for this year’s messaging ideas. Use the hashtags: #FrailAndFurious and #MillionsMissing, and tag @MEActnet. - Create a fundraiser for #MEAction. Use our site or social media. meaction.funraise.org/start-fundra...

Level 2: - Interact on social media! Reshare/Like/Comment on posts in the community. Search hashtags including #FrailandFurious and #MillionsMissing - Share our fundraiser with your network. (new fundraiser coming soon but meaction.net/donate always works too!)

Level 1: - Share @meactnet.bsky.social post on May 12th and leading up to it! Like/comment/share. - U.S. Action: Sign our letter to protect Medicaid for our community. actionnetwork.org/petitions/fr...

Time to get ready for #MillionsMissing which will be May 9th-16th with focus on the 12th! We have a guide by energy level to help you safely join in! The goal of the guide is to do the SAFEST energy level for you and all the ones under it if possible. Toolkit: bit.ly/MM2026toolkit

It’d be really freaking great if our healthy allies would participate, too. Thank you❤️ #MyalgicEncephalomyelitis #pwME

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