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#MEAction Network Profile
#MEAction Network

@MEActNet

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

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Joined May 2014
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@MEActNet
#MEAction Network
9 days
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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@MEActNet
#MEAction Network
16 hours
Holding everyone grieving in love.
@SFdirewolf
Alice Wong 王美華
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@polybioRF
PolyBio
2 days
#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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@Tesla
Tesla
17 days
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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@polybioRF
PolyBio
2 days
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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@PlzSolveCFS
Solve ME/CFS Initiative
2 days
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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@PlzSolveCFS
Solve ME/CFS Initiative
2 days
Exciting to see that the ADDRESS-LC Trial continues to expand! Watch our webinar on the trial here: https://t.co/EoonW4718G
@patientled
Patient-Led Research Collaborative
2 days
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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@patientled
Patient-Led Research Collaborative
2 days
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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@MEActNet
#MEAction Network
2 days
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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@MEActNet
#MEAction Network
2 days
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
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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...
@windscattered
Rich & Figgy
5 days
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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@MEActNet
#MEAction Network
3 days
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
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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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@MEActNet
#MEAction Network
3 days
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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@MEActNet
#MEAction Network
3 days
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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@MEActNet
#MEAction Network
3 days
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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@MEActNet
#MEAction Network
3 days
“If we want to get care and support for our communities, the only feasible way is to work in the largest coalition possible,” said Ben HsuBorger, #MEAction’s U.S. Advocacy Director.
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@MEActNet
#MEAction Network
3 days
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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@MEActNet
#MEAction Network
3 days
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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@MEActNet
#MEAction Network
3 days
“Teach ME, Treat ME” led to over 400 clinicians receiving education on the disease. And #MEAction and Mayo found, in an analysis to be published in an upcoming study, that the education efforts led to more Mayo practitioners correctly diagnosing ME."
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@MEActNet
#MEAction Network
3 days
"In 2022, #MEAction launched a new provider education effort through a partnership with Mayo Clinic. Through its “Teach ME, Treat ME” campaign, #MEAction organizers worked with state and local ME groups to set up 20 educational events promoting the resulting Mayo CME course."
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@MEActNet
#MEAction Network
3 days
"To reach medical students, #MEAction created a study aid on IACCs, which are now recommended by the CDC."
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@MEActNet
#MEAction Network
3 days
#MEAction’s efforts to promote the CME included a multiyear “Postcards to Doctors” campaign in which hundreds of volunteers sent over 6,000 postcards; the campaign helped spur over 700 providers to take the Unrest CME, according to #MEAction."
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@MEActNet
#MEAction Network
3 days
“In its early years, the organization developed a continuing medical education (CME) class centered on the documentary Unrest, which depicts #MEAction co-founder Jennifer Brea’s struggle to receive a diagnosis and care."
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