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WE’RE IGNITING A GLOBAL REVOLUTION IN ME CARE Our movement fights for recognition, education, and research so that, one day, all people with ME and CFS will have […] [bridged from https://meaction.net/ on the web: https://fed.brid.gy/web/meaction.net ]

8 Followers  |  0 Following  |  216 Posts  |  Joined: 19.11.2024  |  1.3814

Latest posts by meaction.net.web.brid.gy on Bluesky

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Let’s Use Spooky Season To Advocate for Medicaid & the ACA Join our social media campaign to advocate for Medicaid and ACA.
21.10.2025 22:47 — 👍 0    🔁 0    💬 0    📌 0
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2nd Annual RECOVER-TLC Research Workshop : A summary Summary review of the recent RECOVER TLC Workshop
20.10.2025 20:50 — 👍 0    🔁 0    💬 0    📌 0
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Apply Today - Writers Guild Initiative Writing Workshops WGI Workshops start in November. Apply today!
10.10.2025 22:03 — 👍 0    🔁 0    💬 0    📌 0
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NOW AVAILABLE: Near- Life Experiences: The Pillow Writers Anthology, Issue 2 Issue 2 features poems, stories, and essays by 28 writers who call themselves the Pillow Writers and share more than 100 pages of their poetry, fiction and essays.
03.10.2025 17:37 — 👍 0    🔁 0    💬 0    📌 0
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Advocacy Works: Fighting for ME/CFS and Long COVID in Minnesota The launch of the Minnesota Home Help Navigation Program is proof that advocacy works.
17.09.2025 15:17 — 👍 0    🔁 0    💬 0    📌 0
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Inside Our Playbook: 6 Strategic Choices Behind Our Minnesota Pilot With the Minnesota Home Help Navigation Program now underway, here’s an inside look at the strategic choices in our patient-led playbook.
17.09.2025 15:16 — 👍 0    🔁 0    💬 0    📌 0
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Guiding Minnesotans Living with Long COVID & ME/CFS to Secure In-Home Help Pilot program offers free support for Minnesotans with energy-limiting illness
03.09.2025 16:00 — 👍 0    🔁 0    💬 0    📌 0
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New Staff Introduction: Linda Pozen Meet #MEAction’s Newest Staff Member- Linda Pozen
03.09.2025 16:00 — 👍 0    🔁 0    💬 0    📌 0
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Celebrating A Big Senate Win #MEAction has been working hard with #NotJustFatigue to advocate for the ME/CFS Research Roadmap and it has paid off! The Senate Appropriations Committee included the roadmap in their report! This is a big step in the right direction. Everyone’s advocacy, including the work of #NotJustFatigue and Solve M.E. have led to this step. I am … Celebrating A Big Senate Win Read More » The post Celebrating A Big Senate Win appeared first on #MEAction Network.
01.08.2025 19:43 — 👍 0    🔁 0    💬 0    📌 0
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#MEAction’s Pacing Narrative Data Gets Published in First Paper + MORE Science updates! We are excited to share some promising updates about the scientific work #MEAction is leading to advance the field of ME/CFS research. Our Scientific Director, Jaime Seltzer, is in the process of coordinating analysis for three major studies, including our massive symptoms survey and pacing survey, drawn directly from the patient experience. Jaime is also … #MEAction’s Pacing Narrative Data Gets Published in First Paper + MORE Science updates! Read More » The post #MEAction’s Pacing Narrative Data Gets Published in First Paper + MORE Science updates! appeared first on #MEAction Network.
22.07.2025 18:35 — 👍 0    🔁 0    💬 0    📌 0
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Severe ME Artists Project 2025 Learn more about this year’s project The post Severe ME Artists Project 2025 appeared first on #MEAction Network.
10.07.2025 16:21 — 👍 0    🔁 0    💬 0    📌 0
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Press Release: UNC Closes its Long COVID Clinic – the Only One in the State The University of North Carolina closed its Long COVID clinic last week after its federal funding ran out. It was the sole Long COVID clinic in North Carolina. The clinic has been a lifeline to thousands of people living with complex conditions often triggered by infection, including Long COVID, myalgic encephalomyelitis / chronic fatigue syndrome … Press Release: UNC Closes its Long COVID Clinic – the Only One in the State Read More » The post Press Release: UNC Closes its Long COVID Clinic – the Only One in the State appeared first on #MEAction Network.
23.06.2025 20:25 — 👍 0    🔁 0    💬 0    📌 0
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Pillow Writers en Español #MEAction is thrilled to announce Pillow Writers Network has expanded once again! This time with a dedicated group for Spanish speakers: Join us for our Pillow Writers En Español meetings! A place where ME/CFS/Long Covid patients are welcome to participate through writing. This #MEAction-sponsored event has been held in English for over three years. We … Pillow Writers en Español Read More » The post Pillow Writers en Español appeared first on #MEAction Network.
19.06.2025 23:54 — 👍 0    🔁 0    💬 0    📌 0
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Happy Juneteenth + Black Disabled Authors Reading List Happy Juneteenth from all of us here at #MEAction! Juneteenth commemorates June 19th, 1865 when slavery of African-Americans was officially enforced. To celebrate we have put together a summer reading list of books by disabled Black authors. Keah Brown is an American author who was born with cerebral palsy. She created the popular hashtag #disabledandcute … Happy Juneteenth + Black Disabled Authors Reading List Read More » The post Happy Juneteenth + Black Disabled Authors Reading List appeared first on #MEAction Network.
18.06.2025 15:08 — 👍 0    🔁 0    💬 0    📌 0
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Minnesota’s Long COVID Funding Saved from Elimination We have good news! The first-in-the-nation Long COVID program run by the Minnesota Department of Health (MDH) has been saved from elimination! This means #MEAction will be able to continue its work helping Minnesotans with ME/CFS, Long COVID and related conditions access vital home and community-based support services, as part of our multi-year grant. Last … Minnesota’s Long COVID Funding Saved from Elimination Read More » The post Minnesota’s Long COVID Funding Saved from Elimination appeared first on #MEAction Network.
11.06.2025 22:19 — 👍 0    🔁 0    💬 0    📌 0
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Millions Missing Scotland 2025 raises a red alert On Wednesday 14th May 2025, #MEAction Scotland held Millions Missing Scotland outside the Scottish Parliament in Edinburgh. The rally sent a clear and urgent message to the Scottish Government to act on the £4.5 million pledged in the 2025-26 budget for specialist support for ME, Long Covid, and other similar conditions. This year’s theme, ‘Red … Millions Missing Scotland 2025 raises a red alert Read More » The post Millions Missing Scotland 2025 raises a red alert appeared first on #MEAction Network.
01.06.2025 16:27 — 👍 0    🔁 0    💬 0    📌 0
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Research Roadmap Petition We reached 7,000 signatures on our last letter. This time, our goal is 10,000. Please sign the letter today and share it with your friends and family. The post Research Roadmap Petition appeared first on #MEAction Network.
07.05.2025 19:07 — 👍 0    🔁 0    💬 0    📌 0
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SOS: #MEAction Responds to Urgent Crisis – MN Long COVID Funding At Risk At 5:00 pm Eastern time yesterday, we found out that the Minnesota house would be voting on a bill that would remove funding to all Long COVID grants, including #MEAction’s grant, which allows us to provide direct support to people with ME and Long COVID. This is yet another SOS moment for people in our … SOS: #MEAction Responds to Urgent Crisis – MN Long COVID Funding At Risk Read More » The post SOS: #MEAction Responds to Urgent Crisis – MN Long COVID Funding At Risk appeared first on #MEAction Network.
07.05.2025 18:19 — 👍 0    🔁 0    💬 0    📌 0
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Share This SOS Image On Your Socials Please help us spread the word! Share and interact with #MEAction’s social media (we are @meactnet) and share this amazing artwork (above ⬆️ ) and a message about #MillionsMissing with your own networks. Desktop: Download by right clicking on the image or clicking on the download icon in the bottom right corner of the image. Mobile: … Share This SOS Image On Your Socials Read More » The post Share This SOS Image On Your Socials appeared first on #MEAction Network.
28.04.2025 16:35 — 👍 0    🔁 0    💬 0    📌 0
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Millions Missing Scotland 2025: Red alert for ME This year, Millions Missing Scotland is raising a red alert. Will you be part of it? #MEAction Scotland volunteers will be outside the Scottish Parliament in Edinburgh on Wednesday 14th May, from 12–2pm, calling on the Scottish Government to urgently act on its promises. Around the world, millions are missing – from school, work, communities, … Millions Missing Scotland 2025: Red alert for ME Read More » The post Millions Missing Scotland 2025: Red alert for ME appeared first on #MEAction Network.
27.04.2025 11:25 — 👍 0    🔁 0    💬 0    📌 0
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#MEAction: Congress Is Hearing from Us #MEAction has been hard at work connecting individuals to their elected officials to talk about the ME/CFS Research Roadmap, Medicaid, and telehealth. We’ve been partnering with #NotJustFatigue on setting up congressional meetings in order to ask our elected officials for their support in making funding of the ME/CFS Research Roadmap a reality. #MEAction State Chapter … #MEAction: Congress Is Hearing from Us Read More » The post #MEAction: Congress Is Hearing from Us appeared first on #MEAction Network.
23.04.2025 23:45 — 👍 0    🔁 0    💬 0    📌 0
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#MEAction Georgia Volunteer, Maggie Boxey, Speaks at TEDxOjai #MEAction Georgia recently had a huge accomplishment. Maggie Boxey, who is a member of the Georgia State Chapter, a Navy veteran, and a published author, recently gave a Tedx talk about her experience as a person with ME. Maggie was diagnosed a year ago but has been sick since 2020. Before becoming sick Maggie and … #MEAction Georgia Volunteer, Maggie Boxey, Speaks at TEDxOjai Read More » The post #MEAction Georgia Volunteer, Maggie Boxey, Speaks at TEDxOjai appeared first on #MEAction Network.
21.04.2025 21:36 — 👍 0    🔁 0    💬 0    📌 0
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SOS: Save our Science People disabled by ME and Long Covid across the UK send out an SOS. It’s time to send out our SOS signal, if we want to have funded research. May 12th, is Myalgic Encephalomyelitis Awareness Day. On this day, the #MillionsMissing of people with myalgic encephalomyelitis (ME) gather to demand an increase in research and … SOS: Save our Science Read More » The post SOS: Save our Science appeared first on #MEAction Network.
11.04.2025 16:34 — 👍 0    🔁 0    💬 0    📌 0
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Why We’re Sending out an SOS this #MillionsMissing On May 12th, #MEAction and the #MillionsMissing are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society. HERE’S WHY: Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. Now, we are seeing constant threats to … Why We’re Sending out an SOS this #MillionsMissing Read More » The post Why We’re Sending out an SOS this #MillionsMissing appeared first on #MEAction Network.
08.04.2025 19:54 — 👍 0    🔁 0    💬 0    📌 0
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Writers Guild Initiative Writing Workshops: Apply Today #MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) again to offer creative writing workshops for people with ME and Long COVID**. WGI has graciously donated their time to offer these writer workshops through personal mentorship with the writers of the #MEAction community! The workshops consist of three sessions during … Writers Guild Initiative Writing Workshops: Apply Today Read More » The post Writers Guild Initiative Writing Workshops: Apply Today appeared first on #MEAction Network.
04.04.2025 18:51 — 👍 0    🔁 0    💬 0    📌 0
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Virtual Interview + Q&A with Stuart Murdoch Stuart Murdoch, from the band Belle and Sabastian, will be interviewed by #MEAction Minnesota’s State Chapter Leader, Terri L Wilder, about his recently released novel, Nobody’s Empire, on Saturday, April 19th at 1pm ET/6pm BST. We hope you join us for this virtual event to learn more about his debut novel. Tickets are available for … Virtual Interview + Q&A with Stuart Murdoch Read More » The post Virtual Interview + Q&A with Stuart Murdoch appeared first on #MEAction Network.
03.04.2025 20:56 — 👍 0    🔁 0    💬 0    📌 0
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#MillionsMissing 2025: Sending Out An SOS For #MillionsMissing 2024, #MEAction is sending out an SOS. The post #MillionsMissing 2025: Sending Out An SOS appeared first on #MEAction Network.
03.04.2025 06:32 — 👍 0    🔁 0    💬 0    📌 0
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White House Halts Funding for Long COVID Grants The White House is terminating funding for NIH RECOVER grants awarded in 2022 and 2023 for Long COVID. The post White House Halts Funding for Long COVID Grants appeared first on #MEAction Network.
27.03.2025 19:49 — 👍 0    🔁 0    💬 0    📌 0
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Women’s History Month I have been honored as I have watched our volunteers share what makes them powerful and who they see power in for Women’s History Month. I hope you will look back on what has been shared so far! This final week we are focusing on our community. And I have made no secret about how … Women’s History Month Read More » The post Women’s History Month appeared first on #MEAction Network.
27.03.2025 18:39 — 👍 0    🔁 0    💬 0    📌 0
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Join the Fight for Medicaid & Telehealth We want to provide you with an update about where we stand with the federal administration massively cutting Medicaid and threatening to get rid of Telehealth extensions. We are so grateful for the actions that you have taken with us to fight to protect Medicaid and Telehealth but we still have a long road ahead … Join the Fight for Medicaid & Telehealth Read More » The post Join the Fight for Medicaid & Telehealth appeared first on #MEAction Network.
26.03.2025 19:17 — 👍 0    🔁 0    💬 0    📌 0