#disabilitySOS
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meactnet.bsky.social
Check out this video for #MillionsMissing #DisabilitySOS!

#pwME #MyalgicEncephalomyelitis #LongCovid #MECFS
dianaleighwaldron.bsky.social Diana Leigh Waldron @dianaleighwaldron.bsky.social · May 12
I made this video for ME Awareness Day 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
May 12, 2025 at 2:14 PM
meactnet.bsky.social
How are you getting ready for #MillionsMissing coming up on May 12th? We have three main ways that you can join in!

1. Join us in DC.
2. Host or attend a local event.
3. Show Up From Home.

All info: www.meactions.org/millionsmiss...

We have toolkits available to help you!

#DisabilitySOS
Simple graphic with red background and white writing with the list included in the post. Text under SOS #MIllionsMissing logo: "Join us for #MillionsMissing 2025 1. Join the protest at the Capitol in Washington, D.C. 2. Host your own protest or gathering in your hometown 3. Show up from home on May 12th and in the lead up to #MillionMissing #DisabilitySOS"
April 21, 2025 at 7:14 PM
kristinwrites.bsky.social
#WorldMEDay #MillionsMissing25 #DisabilitySOS

In a crash bc it was my birthday yesterday. I did not do very much extra. Brain soup. Mandatory nap. Need help walking. Will send my personal email and fundraiser later. This is #MECFS and #LongCovid

Only science will save me.

@meactnet.bsky.social
May 13, 2025 at 2:31 AM
rippermd41.bsky.social
But the third cruelty of #MECFS is when you need sleep the most, it can steal your ability to sleep. There are times when I’m lucky if I get 3 hours of sleep a night during PEM.

#MillionsMissing #DisabilitySOS
May 13, 2025 at 1:57 AM
diatoma.bsky.social
Critical funding for #ME research, care, and support (achieved through immense labor by very ill people, and still far from commensurate to disease burden) is currently in danger in the U.S., so I'm joining @meactnet.bsky.social #MillionsMissing in putting out a #DisabilitySOS. (5/x)
A red poster with the hashtag #MillionsMissing at the top. Below that the letters SOS spelled out with 18 selfies of a white Mexican woman lying down, often in the dark and wearing an ice hat, sometimes with a beloved orange cat. Below that some key facts: - M.E. has one of the lowest Quality if Life measurements of any disease - There are zero FDA approved drugs for ME - NIH M.E. funding is extremely low relative to disease burden - Even this limited funding is currently at risk #DisabilitySOS #GreatestMEdicalScandal #MyalgicEncephalomyelitis #WorldMEDay
May 9, 2025 at 1:22 AM
teasetmonster.bsky.social
Save our support systems, save our science, save our society! My chronic illness, ME/CFS, is the most underfunded disease by disease burden in the NIH, leading to under diagnoses even of severe cases and no existing FDA approved treatment.
@meactnet.bsky.social #MillionsMissing #DisabilitySOS #art
A loose digital painting of a bed swept up in stormy waves with the text "S.O.S., I am one of the #MilllionsMissing" with the "O" of "S.O.S." replaced with a lifesaver.
May 12, 2025 at 11:32 PM
hollyl.bsky.social
Join us in two weeks! Now id the time to prepare! I am participating from home and using the Show Up From Home Toolkit!

@meactnet.bsky.social has toolkits for however you join in!

#MyalgicEncephalomyelitis #spoonie #chronicIllness

#MillionsMissing #DisabilitySOS
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · Apr 28
You are invited to join us for #MIllionsMissing #DisabilitySOS on May 12th - two weeks from today! Join us in DC and online! All you need to know can be found here: www.meactions.org/millionsmiss...

#MEAction will be sounding a Disability SOS at the nation’s capitol and across social media.

#PwME
Cartoon protest art with detailed, dark lines depicting the Statue of Liberty sinking to her crown in bright red liquid. She holds her torch high above an ocean of red next to the words "#Millions Missing SOS". Text in the image reads "May 12, 2025 protest in Washington D.C. and from home."
April 28, 2025 at 5:09 PM
turnoftheshrew.bsky.social
#MillionsMissing 2025 is more dire than ever: tens of millions suffering horrifically w/o treatments, many w/o any meaningful healthcare at all, & a government that strips more funding, policy & protections away each day. #DisabilitySOS #MECFS #LongCovid #MyalgicEncephalomyelitis #pwME
Art of lady liberty drowning in red water, the torch and crown visible above water’s surface, face and neck and arm visible under the water. Text says: #millionsmissing SOS #MEaction May 12, 2025 protest. Washington DC and from home. 2025 #millions missing. Art signed in right corner by Jessica kaushansky 2025
May 12, 2025 at 4:22 PM
meactionuk.bsky.social
Thanks bb.ealain for making these eye-catching postcards for @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social and the funding bodies.

Help by posting ❤️ sharing #MillionsMissing #DisabilitySOS posts today and tagging the government and funders!

Info: ow.ly/OuTu50VQOvw
Five postcards with black and white illustrations of tombstones on the front in memory of 'My Career' Lost to Long Covid. SOS in red on the back with messages to MPs and funding bodies.
May 12, 2025 at 3:11 PM
jillsunflower.bsky.social
#MEaction #MEawareness #DisabilitySOS #fundNIH #fundResearch
May 13, 2025 at 4:09 AM
meactionuk.bsky.social
We are honoured @swiftsandswallows.bsky.social
shared this SOS made in memory of her daughter Isla who died last year.

@rthonwesstreeting.bsky.social nwesstreeting.bsky.social, @ashleydaltonmp.bsky.social. Fund ME research to stop this happening again.

#DisabilitySOS #MillionsMissing.
May 13, 2025 at 10:57 AM
ethyricalartist.bsky.social
Love this bingo card, thank you for posting - I’ll repost below with my video on #SevereME & hope people will share our #DisabilitySOS 🆘

(The Mutual Aid One is especially important for people like me as I’m losing my housing!!)

#pwME #MEawareness #disability #signalboost

bsky.app/profile/ethy...
Bingo card for helping with ME Awareness Month
May 12, 2025 at 7:59 PM
meactnet.bsky.social
Help us send out a strong SOS message this May 12th for #MillionsMissing.

Laurie Jones, executive director of #MEAction, invites you to join us in DC or online!

All you need to know to participate can be found at www.meactions.org/millionsmiss....

#DisabilitySOS #pwME #MyalgicEncephalomyelitis
April 29, 2025 at 11:35 PM
meactnet.bsky.social
Save our support systems. Save our science. Save our society. Send out a #DisabilitySOS!

#DisabilityJustice #MECFS #Spoonie #Disability

Video description: Laurie Jones (white woman with long dark hair pulled back) is wearing a red SOS tee and a life jacket as she speaks directly to the camera.
April 29, 2025 at 11:35 PM
meactnet.bsky.social
We have a HUGE update for you! Check your emails! See the full update here as well: bit.ly/4kleN4T

#MEAction wants to send out a huge thanks to everyone who participated and continues to take action in response to this year’s #MillionsMissing campaign.

#pwME #MECFS #LongCovid #DisabilitySOS
A collage of photos from in person and online actions for #MillionsMissing and International ME Awareness Day. All are overlaid with a red tint and in the middle is the SOS #MIllionsMissing logo.
May 16, 2025 at 6:41 PM
meactionuk.bsky.social
It's #MillionsMissing!!!

Share your 🆘 on social media today & tag us
@MEActNetUK
using hashtags #DisabilitySOS & #MillionsMissing. 📣

Funding org tags👇
ow.ly/ewnZ50VCe0F
If you can't post can you ❤️ & share?

#MillionsMissing #DisabilitySOS #MyalgicEncephalomyelitis
Send your S.O.S. today! in black with #MEAction UK & Scotland and #MillionsMissing at bottom of page in white text. Photograph of a clear bottle with cork lying on a golden sandy beach lapped by waves with S.O.S. written on a large piece of white paper inside.
May 12, 2025 at 8:50 AM
johnvsjonvsme.bsky.social
We’re sending out a #DisabilitySOS to @colmandomingo.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth
A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text. Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text. On right side, “I nominate Colman Domingo for this” in red text. On left side, an image of Colman Domingo as a lifeguard holding a red and white safety floatation ring. The background is a photograph of an enormous ocean wave crashing near the shoreline. At the bottom, “#JohnVsJonVsME” in black text.
May 23, 2025 at 9:26 PM
johnvsjonvsme.bsky.social
We’re sending out a #DisabilitySOS to @ronnychieng.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth
A Lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text. Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text. On right side, “I nominate Ronny Chieng for this” in red text. On left side, an image of Ronny Chieng as a lifeguard holding a red and white safety floatation ring. The background is a photograph of an enormous ocean wave crashing near the shoreline. At the bottom, “#JohnVsJonVsME” in black text.
May 28, 2025 at 10:51 PM
diatoma.bsky.social
For the folks asking "What can I do to help people with #MyalgicEncephalomyelitis?", here's an Action Bingo for #MEAwarenessMonth ❤️.

Comment below when you've covered one or many of these boxes so I can rejoice with you! (1/4)

#MillionsMissing #WorldMEDay #DisabilitySOS #GreatestMEdicalScandal
Bingo board titled #MEAwarenessMonth 2025 ACTION BINGO With an illustration of a diatom and a piñata There are 9 boxes that contain the messages: 1. AMPLIFY (like, comment, share) posts by #pwME with #MyalgicEncephalomyelitis #MillionsMissing #MEAwareness #WorldMEDay #MECFS #DisabilitySOS 2. SIGN the MEAction Network letter in support of the "ME/CFS Research Roadmap." 3. Learn more about #GreatestMEdicalScandal at www.johnvsjon.com 4. SEND the Mao Clinic Proceedings Concise Review #Diagnosis and Management of MyalgicEncephalomyelitis/Chronic Fatigue Syndrome" to your doctors and friends in healthcare. 5. SEND the new Bateman Horne Center "Clinical Care Guide to Managing ME/CFS, Long Covid, and IACCs" to your doctors and friends in healthcare. 6. Follow the MEAction Network, the World ME Alliance, The Sick Times and other advocacy and news orgs to stay informed on ME, Long Covid, and IACCs news & campaigns. 7. FOLLOW and if possible DONATE to orgs advancing research, for example: Open Medicine Foundation, Polybio Foundation 8. DONATE to Mutual Aid #pwmE #MutualAid #MECFS #SevereME #DontLetMEDie 9. JOIN @johnvsjonvsme in tagging journalists, actors, scientists, and other professionals you want to see cover and champion #GreatestMEdicalSCandal
May 11, 2025 at 12:05 AM
somethingchronic.bsky.social
… Fluctuating conditions like #LongCovid and #MECFS which the government are aware was – and still is – one of the biggest mass disabling events in history.

And guess who funded the fraudulent #PACEtrial – oh that’s right, the DWP.

#GreatestMedicalScandal #TakingThePIP #DisabilitySOS
July 1, 2025 at 10:39 AM
johnvsjonvsme.bsky.social
Remember to TAG your nominee and @JohnVsJonVsME.bsky.social so we can re-share). And if you have spoons🥄, tell the person about WHY you are nominating them to HELP! 🛟

E.g., we are nominating Utkarsh Ambudkar because he spoke emphatically about #MECFS on a recent episode of After Midnight 🥹 9/
A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text. Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text. On right side, “I nominate Utkarsh Ambudkar for this” in red text. On left side, an image of Utkarsh Ambudkar as a lifeguard holding a red and white safety floatation ring. The background is a photograph of an enormous ocean wave crashing near the shoreline. At the bottom, “#JohnVsJonVsME” in black text.
May 12, 2025 at 11:30 PM
diatoma.bsky.social
I’m sending out a @johnvsjonvsme.bsky.social #MillionsMissing #DisabilitySOS to health justice leaders #EndTB - doctors, authors, and advocates whose work I appreciate immensely: @joiamukherjee.bsky.social @mariasmilios.bsky.social @johngreensbluesky.bsky.social @vidyakrishnan.bsky.social (1/8)
Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate Vidya Krishnan for this” in red text. On left side, an image of Vidya Krishnan as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text. Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate Joia Mukherjee for this” in red text. On left side, an image of Joia Mukherjee as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text. Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate John Green for this” in red text. On left side, an image of John Green as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text. Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate Maria Smilios for this” in red text. On left side, an image of Maria Smilios as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text.
May 14, 2025 at 10:10 PM
hollyl.bsky.social
I am in the Show Up From Home category myself! How about you?

Pssstttt...you can "show up from home" if you go to DC or attend a local event too!

#pwME #MyalgicEncephalomyelitis #MECFS #MillionsMissing #DisabilitySOS

Toolkit: docs.google.com/document/d/1...
April 21, 2025 at 7:29 PM
johnvsjonvsme.bsky.social
We’re sending out a #DisabilitySOS to @michaelkosta.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth
A Lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text. Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text. On right side, “I nominate Michael Kosta for this” in red text. On left side, an image of Michael Kosta as a lifeguard holding a red and white safety floatation ring. The background is a photograph of an enormous ocean wave crashing near the shoreline. At the bottom, “#JohnVsJonVsME” in black text.
May 28, 2025 at 10:19 PM
diatoma.bsky.social
Este es mi noveno año abogando por la #EncefalomielitisMiálgica #MyalgicEncephalomyelitis #MillionsMissing #MEAwarenessMonth.
Mi salud ha empeorado considerablemente desde entonces, pero siento esperanza porque (1/6)
Póster rojo con el hashtag #MillionsMissing a mero arriba, seguido por las letras SOS creadas por 18 autoretratos de una mujer mexicana acostada, frecuentemente en la oscuridad, a veces acompañada de un gato anaranjado. El texto del póster lee: "La EncefalomielitisMiálgica es una de las enfermedades con menor calidad de vida. Existen CERO medicamentos aprobados por la FDA para tratarla. El financiamento de los NIH para esta enfermedad es bajísimo relativo a su carga de morbilidad. Incluso este financiamiento limitado está en riesgo. #DisabilitySOS
May 9, 2025 at 2:13 AM