#MEAction Network
@MEActNet
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A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Global
Joined May 2014
This year has been heavy—political whiplash, uncertainty, and real harm for our community. we are here, advocating on the ground. Remember, HOPE is a sweet rebellion. #MEAction is a lantern in the darkness. We can only continue with your support. https://t.co/VxwoNWqu41
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Holding everyone grieving in love.
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#polybiofallsymposium2025: PolyBio cofounder Dr. Michael Van Elzakker described his lab’s research on neuroinflammation in Long Covid and pre-2018 ME/CFS. Via their PET scanning methodology, biological markers in patient samples (i.e. L-selectin, fibrinogen) are found to be
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Model 3 and Model Y battery packs retain 85% of their capacity on average after 200K miles of driving We also offer an 8 years or 120,000 miles battery warranty, whichever comes first
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PolyBio President Dr. Amy Proal kicks off the #polybiofallsymposium2025 with an exciting reveal of the Long Covid Cure initiative—a program aiming to engage industry partners to help identify high-quality Long Covid diagnostics & design efficient clinical trials.
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Sign up for our webinar “Protecting the Ones You Love: Legal & Insurance Tools for ME/CFS Caregivers.” Andrew Kantor, Esq. of @KantorKantor will share practical legal and insurance tools. Wed. Feb. 11, 2026 @ 12 pm PT / 3 pm ET. https://t.co/MwotQJoW5f
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Exciting to see that the ADDRESS-LC Trial continues to expand! Watch our webinar on the trial here: https://t.co/EoonW4718G
A new site is enrolling for the #LongCovid ADDRESS-LC trial on bezisterim: Mount Sinai (NY)! Bezisterim is an investigational drug that has been studied in neurological disorders, including Alzheimer’s. Find a site near you: https://t.co/yS2GiXjCfV
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A new site is enrolling for the #LongCovid ADDRESS-LC trial on bezisterim: Mount Sinai (NY)! Bezisterim is an investigational drug that has been studied in neurological disorders, including Alzheimer’s. Find a site near you: https://t.co/yS2GiXjCfV
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Join us this SUNDAY - Nov. 16 at 3 pm ET for a workshop for caregivers: Top 10 Lessons from 20 Years of Caregiving by Kim Moy. https://t.co/WNMppelCE5 Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22. #PwME #UnitedForME #Caregiver #ChronicIllness
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We have been asked to share this fundraiser for Rich, a #pwME and three other rare and serious conditions who is in need of help funding treatment. Please see details below! Fundraiser sharing policy: https://t.co/LWNCwRw6jZ
#MyalgicEncephalomyelitis #MECFS
docs.google.com
#MEAction sharing personal fundraiser policy This policy begins in August 2025. In recognition of the need for mutual aid, #MEAction has offered to share personal fundraisers once per calendar year...
Another day of trying to exist with extreme neurological symptoms and the relentless stress of having to fight for proper care while seriously ill—something that should be a basic human right. I’m also contacting journalists to expose a devastating medical scandal unfolding in
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Join our caregiver call this Saturday Nov 15th at 1:30 PM – 3:30 PM EST. We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to our calls as we connect with and support each other! https://t.co/hzGe1Qg3S2
meaction.net
For caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions. 1:30pm ET — 3:30pm ET Click for details.
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It also mentions the SICK Pride event in South Africa about which Sam Pearce said it “was about making us visible in a way that wasn’t going to disable us. We can’t march, but we can lie down in a park and take up space.” #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis
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The article also features the community support work and mutual aid work done by communities like the Long COVID Collective, and platforms like the LongCovidAidBot X account, Long COVID Solidarity and Co-Resting.
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The Sick Times article also writes about the fight against mask bans by organizations like Triangle Mask Bloc and Long COVID Justice, and talks about the protests and billboards that Berlin Buyers Club have organized.
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The Sick Times article also discusses direct action, including the #MillionsMissing campaigns that #MEAction organizes... protests that have included activists lying in front of the White House and laying out shoes in public spaces to symbolize “missing” people with ME...”
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Stephanie Grach, Mayo Clinic internist and research chair for fibromyalgia, ME, and POTS, who has served as a lead collaborator with #MEAction, said that since “Teach ME, Treat ME,” she’s seen more practitioners, both inside and outside Mayo, giving ME patients better guidance.”
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