#MEAction Network

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#MEAction Network

#MEAction Network

@MEActNet

A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi

Global Katılım Mayıs 2014
2.5K Takip Edilen19.3K Takipçiler
#MEAction Network
#MEAction Network@MEActNet·
@liamsLCjourney Hey there. I replied to you on your Facebook question! It's kind of long to repost here. Let me know if you have trouble finding it.
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Liam's LC/ME Journey
Liam's LC/ME Journey@liamsLCjourney·
Great to hear about all the meetings. Curious about the pivot from larger, nationwide protests into a small storytelling event. Were these just too hard to organize? Was attendance falling? Or did we feel like these didn't have the impact that they should have, and energy is better off spent in other areas?
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#MEAction Network
#MEAction Network@MEActNet·
This #MillionsMissing was powerful. "Medical Frailty" was our rallying cry to advance research and protect Medicaid. We met with the Acting Chief of Staff to the U.S. Surgeon General, and connected with the Centers for Medicare & Medicaid Services. #FrailAndFurious #pwME
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#MEAction Network
#MEAction Network@MEActNet·
We are excited to announce another collaboration with the Writers Guild Initiative (WGI). We will be offering writing workshops to our community on June 6th, 13th, and 20th. Please apply by the May 22, 2026, deadline: ow.ly/tVmQ50YZObf #PwME #MECFS #LongCovid
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CoRy Wyszynski | Photo Alchemist
CoRy Wyszynski | Photo Alchemist@corywysz·
ME is a complex disease that has been with me since a young age. It has ruled over most of my life. All May long, I am raising money for @MEActNet | via @tiltify @corywysz/personal/raising-awareness-and-funds-for-meaction-network" target="_blank" rel="nofollow noopener">tiltify.com/@corywysz/pers…
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#MEAction Network
#MEAction Network@MEActNet·
MEAction had an excellent meeting with Senator Graham’s office yesterday about funding the ME/CFS Research Roadmap. Thank you to MacKenzie Hand (in video) & all advocates who joined us in DC - we met with 8 Congressional Offices in partnership with @NJFatigue! #MillionsMissing
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Relish Hendy aka 💙Nanny Jen💙
Relish Hendy aka 💙Nanny Jen💙@relish_hendy·
I’m one of #MillionsMissing but you might see me every day. It hurts if I move. It hurts if I stay still. I get woke up in the night with spasms in my neck, forearms, hips and shins. It burns. It makes me shake. No known pain relief ameliorates the sensation We need a cure #ME
Tom Kindlon@TomKindlon

Great news from the UK🍾 £4.75 million to do whole-genome sequencing on 6000 DecodeME samples thetimes.com/uk/healthcare/… (paywall) Unfortunately it's not enough to analyse the full sample People can find out more about SequenceME & donate here megenetics.org.uk/our-projects/s… #MEcfs #PwME

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Hippymum
Hippymum@Baybabe75·
43 years ago I went down with a virus. I never recovered. I spend my days in a dark room wearing earplugs, missing out on my life and my children and grandchildren's lives. #MillionsMissing #pwME #MEResearchNow #ME #StillSick
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Mki🖤
Mki🖤@MkiValentine·
Today is ME Awareness Day💙 #meawarenessday #millionsmissing [Lyrics by @AllTimeLow taken from "English Blood/American Heartache" because this chronic illness may or may not be a part of me now🎗️]
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Lizzy H
Lizzy H@hopefullizzy·
Today is #worldMEday and part of #MEawarenessweek I’ve had this horrific disease since I was 14yrs old. A fit, health and active teenager, until I got a severe gastric flu, and never recovered. For the last 7yrs in various ways my health has been declining, until near death
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MillionsMissingNL
MillionsMissingNL@MMissingHolland·
𝗛𝗶𝗲𝗿𝗱𝗼𝗼𝗿 𝘃𝗼𝗲𝗹𝘁 𝗠𝗮𝗿𝗶𝗲𝗸𝗲 𝘇𝗶𝗰𝗵 #𝗙𝗿𝗮𝗶𝗹𝗮𝗻𝗱𝗙𝘂𝗿𝗶𝗼𝘂𝘀 Er is een heel leven dat geleefd had kunnen worden, maar er is geen behandeling voor ME/CVS die dat mogelijk maakt. Al decennia lang. #MillionsMissing #pwME #MyalgicEncephalomyelitis #MEAwarenessDay #MEactNOW
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#MillionsMissingDenmark
#MillionsMissingDenmark@MillionsMissin2·
MILLIONSMISSING COPENHAGEN 12. MAJ 2026! ❤️❤️❤️ ME Foreningen er netop nu tilstede på Gammeltorv ved Strøget i København for at markere den internationale ME-dag. ❤️❤️❤️ Tomme sko symboliserer ME-ramte, der pga sygdom mangler ude i livet. ❤️❤️❤️ #mecfs
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Carrie Anna McGinn
Carrie Anna McGinn@Carrie_McGinn·
I'm one of the #MillionsMissing due to #MECFS. On this #MEAwarenessDay, I advocate for more high quality research, so we may one day have treatments and cures for this devastating illness. 🩵
Carrie Anna McGinn@Carrie_McGinn

May 12th is #InternationalMEAwarenessDay. 💙 I live with #MECFS, triggered by a COVID-19 infection. I'm one of the #MillionsMissing from my life. I'm #StillSickStillFighting. My greatest hope is that I may one day get back to my beautiful, full life I so desperately miss. 1/

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Keşfet

@liamsLCjourney @corywysz @tiltify @njfatigue @AllTimeLow @elonmusk @BarackObama @taylorswift13