#ME #myalgiskencefalopati #millionsmissing #MEawareness
#MEerikkeCFS #kronisksykdom #MyalgicE #MyalgicEncephalomyelitis
www.gjengangeren.no/lene-lever-m...
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Hashtag
#millionsMissing
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are asked to prove their medical frailty - how sick we really are.
This #MillionsMissing, we are Frail and Furious, and we are mobilizing the community to educate the world about how serious and complex this disease truly is.
@meactnet.bsky.social
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#MillionsMissing 2026 Toolkit
Governments and healthcare systems around the world fail to classify myalgic encephalomyelitis (aka #ME/CFS) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Over and over again, people with ME and Long COVID
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#MillionsMissing
Die meisten können es sich nicht wirklich vorstellen. Selbst Leute, denen man genau erzählt hat, was Sache ist. Mit fehlen anscheinend die richtigen Worte.
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📨Eure Videobotschaften könnt ihr noch bis 24.04.26 an aktion@mecfs.at, alle Infos dazu auf all unseren Kanälen.
#unversorgtseit1969 #ME/CFS #MillionsMissing
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Thank you to
@meactnet.bsky.social #millionsmissing #Frailandfurious
for the writing workshop on 4/14/26. You inspired me!
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Wir freuen uns über eure zahlreiche Teilnahme und darauf, das Endergebnis am 09.05. zeigen zu dürfen.
📍09.05.2026 14:00 - 16:00
📍Platz der Menschenrechte, Wien
#unversorgtseit1969 #ME/CFS #MillionsMissing
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#ZaynMalik #MysteryIllness #Virus #Sick #WhatsGoingAround #DiseaseX #ChronicIllness #InvisibleIllness #Undiagnosed #ChronicPain #RareDisease #LongCOVID #MillionsMissing #IHaveAPreexistingCondition
#VaccineInjury
www.youtube.com/shorts/9fj65...
www.dailymail.co.uk/tvshowbiz/ar...
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You can try to ignore the truth, but the elephant in the room is only getting bigger and more powerful. The reality of #MEcfs, #LongCOVID, and other #PAIS cannot be dismissed. In the end, scientific truth always triumphs over denial.🙏
#MillionsMissing #NotRecovered
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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.
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Level 3 actions with a level 3 battery on white background with red graphics and black text. Frail and Furious #MillionsMissing logo. Text: Share your story on social media. 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. Start your own fundraiser using our site, or using Facebook or Instagram's fundraising platforms.
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...
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Level 2 actions with a level 2 battery on white background with red graphics and black text. Frail and Furious #MillionsMissing logo Text: Interact on social media! Reshare/Like/Comment on posts in the community. Search hashtags including #FrailandFurious and #MillionsMissing Share our fundraiser with your network.
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!)
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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
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Morgen heiratet mein kleiner Bruder standesamtlich. Ich hoffe, ich schaffe es zur Trauung und danach geht’s direkt wieder heim. Drücke mir die Daumen! 🥹🍀
#MECFS #learnaboutme #longcovid #millionsmissing
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2026 Millions Missing storytelling workshops final session on April 16 at 4 pm ET. Graphic at the bottom with April 16th circled and April 14th with an x on top. Text based graphic with cream background and red and black accents. Text: Storytelling workshops. Final workshop is April 16 at 4 pm ET. Register now! Last chance!
Our final #MillionsMissing Storytelling workshop is tomorrow - April 16 at 4 pm ET. All are welcome!
Thank you to our narrative working group for giving their energy to help our community & thanks to our community for sharing their stories!
Register: https://ow.ly/6mXj50YCSEi
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It's been three and a half decades since I contracted the flu, probably a virus, that stole my active life. I got sick & never recovered. Today is my M.E. anniversary, my "sickiversary." People with Long COVID are only beginning a journey that for me has lasted 35 years. #millionsmissing
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2026 Millions Missing storytelling workshops registration open for April 14 and 16 at 4 pm ET, two sessions available. Text-based graphic with dates circled on a calendar. Text: Are you registered? Storytelling workshops April 14 and 16 at 4 pm ET. Two dates/same format. Register now!
Register now for either of our #MillionsMissing Storytelling workshops coming up THIS WEEK on April 14th and 16th at 4 pm ET. For anyone wanting some guidance and help crafting your story!
April 14 https://ow.ly/49nK50YCSEf
April 16 https://ow.ly/6mXj50YCSEi
#FrailAndFurious #pwME
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ME Action logo and the following text ME Action: Join Us for #MillionsMissing 2026! In the U.S., new Medicaid rules will force people with ME and Long COVID to work 80 hours per month or lose their government health insurance, unless they can prove they have a "serious or complex medical condition” in order to get a "medically frail" exemption. We know that both are true for the majority of our community but, once again, we are having to fight to prove this to our health leaders. When ME is overlooked, people are denied the protections, services, and support that medically frail patients are supposed to receive. Read more here>>
ME Action @meactnet.bsky.social : Join Us for #MillionsMissing 2026!
www.meaction.net/millionsmiss...
Also discusses there are plans for the UK for May
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME
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Registration links for storytelling workshops this week to prepare for #MillionsMissing!
April 14 at 1 pm PT/ 4 pm ET:
us06web.zoom.us/meeting/regi...
April 16th at 1 pm PT/ 4 pm ET:
us06web.zoom.us/meeting/regi...
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I'm extremely belated at boosting this but *waves hands* these workshops are happening this week
It's a creativity + advocacy workshop:
a way to creatively frame your own experiences
to help push for key systemic goals
in preparation for #MillionsMissing
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Thanks for fighting. #MillionsMissing #MEKills
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Buried Alive with ME. A film by @anilvanderzee.bsky.social about the hell of living with #SevereME. Release set for ME Awareness Day on May 12, 2026. A must-see.
Part of M.E. Kills for A Quiet Storm, an online gallery showcasing the art of #pwME.
#MillionsMissing #MEkills #CureME #MEawareness
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Inspired by German protests using body bags.
ME kills — directly, and through neglect.
Full film drops May 12 (ME Awareness Day).
NL folks: see it early at Ongebroken in Amsterdam, Apr 29–May 5.
🔗 aquietstorm.me
🔗 ongebroken.nl
See you there?
#pwme #myalgicE #millionsmissing #severeME
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TRAILER: Buried Alive with M.E.
I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm.
People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death.
#pwme #millionsmissing #severeME
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Finde so übel, wie hinter Ausdrücken wie "dauerhafte strukturelle Veränderung der Arbeitsmärkte und der wirtschaftlichen Produktivität" ganz schlimme Schicksale einfach verschwinden. Menschen die nur noch im Bett liegen können, deren Leben vorbei ist... #millionsmissing
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So help us make it LOUD and CLEAR: People with ME and Long COVID are medically frail.
Join us this May for #MillionsMissing.
#pwME #MyalgicEncephalomyelitis #LongCovid
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Are you frail & fabulous? Frail & fighting…formidable…funny? We want to hear what your “and” is…so tell us, what is your “f” word?
Join us this #MillionsMissing to tell the world we are #FrailAndFurious & so much more!
Fight for our healthcare
Will you join us?
Millionsmissing.org
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Person using a megaphone to amplify their voice, promoting storytelling for the #MillionsMissing campaign in 2026. Text: "Storytelling is a key part of #MillionsMissing this year! There are HUGE policy implications this year for telling your story. Share your story on social media and/or to our story bank. See our #MillionsMissing Take Action Toolkit for all the info." Detailed photo description: White woman with brown hair pulled back wearing sunglasses and a coat holds megaphone and is speaking into it. Above her is a sign that says "amplify your voice."
Storytelling is a key part of #MillionsMissing! Find all you need in our toolkit: https://ow.ly/IUOk50YGIh9
It’s essential that we make our policymakers understand that ME is a serious, complex disease that deserves care and support, appropriate treatments and research.
#FrailAndFurious #MECFS
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Wir finden: Das Warten muss ein Ende haben. Setze mit uns ein wichtiges Zeichen für ME/CFS und unterstütze uns bei unserer Aktion!
📍09.05.2026 14:00-16:00
📍Platz der Menschenrechte, Wien
#unversorgtseit1969 #ME/CFS #MillionsMissing
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Join MEAction's Shalida Dobbins and our amazing narrative working group volunteers for one of the two storytelling workshops to prepare for #MillionsMissing!
April 14 at 1 pm PT/ 4 pm ET: us06web.zoom.us/meeting/regi...
April 16th at 1 pm PT/ 4 pm ET: us06web.zoom.us/meeting/regi...
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