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

Global
Joined May 2014
#MEAction Network retweeted
🍁 Happy Fall & Halloween 🎃 Y’all! @MEActNet NC State Chapter Support Group is upon us. Wed, OCT 21, 12:30 pm ET US. Join us now for open, paced conversation on highs &lows of living with or with someone with ME/CFS or Long Covid. Next post in 🧵has link to join info.
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#MEAction Network retweeted
The CDC's proposed 2028 survey could leave millions of people with ME/CFS and Long Covid uncounted. Solve is speaking up. You can, too. Submit your comments by October 19! Check out the link below for details: solvecfs.org/cdc-me-cfs-long… #MECFS #CDC #HealthAdvocacy #LongCovid
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1/4. Annual Mtg - this weekend This Sunday! Please join us for our Annual Meeting "Being Seen", October 18 at 1pm ET   Full details and register here: massmecfs.org/events/annual-…
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#MEAction Network retweeted
Join “Coffee” with a Clinician: Assessment & Management of Cognitive Impairment. Explore cognitive symptoms and practical strategies. Wednesday, October 14 | 10:00 am MDT Register: bit.ly/3JCHAFq If Zoom reaches capacity, watch live on our YouTube channel.
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#MEAction Network retweeted
Voter registration deadlines are quickly approaching! 11 states have voter registration deadlines today. Check your registration status or complete your registration at vote.gov.
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#MEAction Network retweeted
Join our Nov. 10 webinar on the @RenegadeRes SIGNAL study. We’ll discuss how people w/ #MECFS & #LongCovid can join and borrow therapeutic devices for home use at no cost & contribute data to the @BrainInflCollab unhide® platform for research. Register: ow.ly/bnIN50ZIvxa
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#MEAction Network retweeted
The 2026 Stanford Community Symposium recordings are now on YouTube. Every talk is now online, including Danielle Meadows, PhD, OMF's VP of Research Programs and Operations, on the clinical trial landscape in ME/CFS and Long COVID. ▶️ ow.ly/I7qV50ZSFYx
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#MEAction Network retweeted
Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed. New @wecrunchme visual on this topic 💙
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#MEAction Network retweeted
Last day to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. 👉 Take the Survey: ow.ly/pImY50ZITNr
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#MEAction Network retweeted
You’ve made a plan to vote, but now what? There’s more to do before Election Day! One thing we suggest is getting involved at the local level in your community. This can look like many things, so we’ve put together a list of three ways you can take action before Election Day. You can get involved with REV UP and find your local coalition: aapd.com/revup-join/. ID: Blue and red text on a cream background. Three ways to engage in collective action during Disability Voting Rights Week. REV UP has 27 coalitions in 26 states! Join or start one in your area. AAPD will help you! Sign up to be a poll worker! Advocate for laws that support accessible voting, and a more accessible democracy.
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#MEAction Network retweeted
Next NC @MEActNet State Chapter mtg is on ADVOCACY Sat. Oct. 3, 2026 11:00 AM EDT US Opportunities for action, medium, small, & teeny. Make a difference from your bed/recliner. All volunteers welcome regardless of capacity. Deets 🔗in next post. 🙋‍♀️ 🙋‍♀️ 🙋‍♂️ 🙋‍♀️ 🙋‍♀️ 🙋‍♂️ 🙋‍♀️ 🙋‍♀️
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#MEAction Network retweeted
🍁 Happy Fall Y’all! September ME/CFS, LC @MEActNet NC Support Group Wednesday, the 17th, 12:30 pm ET US. Join us for an open, paced conversation the highs, lows, and in-betweens of living with or with someone with ME/CFS or Long Covid. Next post in 🧵has link to join info.
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#MEAction Network retweeted
Pediatric Guides: Explainer of ME/CFS for young people from @actionforme : actionforme.org.uk/wp-conten… Pacing Guide aimed at caregivers @MEActNet Guide to Pacing aimed at Caregivers: shttps://www.meaction.net/_files/ugd/b5886a_3d02047362d34fe4afad958b81b7d046.pdf
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#MEAction Network retweeted
My Betta Fish made it into the gallery
You are invited the the Severe ME Artists Project Gallery! We have such a unique and powerful selection of work. We have written work, videos, and a still gallery with many types of art! meaction.net/severe-me-artis… #SevereME #MyalgicEncephalomyelitis #pwME
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#MEAction Network retweeted
Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the coming weeks. Read more from Betsy Ladyzhets: thesicktimes.org/2026/08/18/…
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#MEAction Network retweeted
I love this so much!
You are invited the the Severe ME Artists Project Gallery! We have such a unique and powerful selection of work. We have written work, videos, and a still gallery with many types of art! meaction.net/severe-me-artis… #SevereME #MyalgicEncephalomyelitis #pwME
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"Making permanently disabled people prove they are still disabled year after year does not REDUCE FRAUD. It CREATES a tremendous amount of WASTE... it would be better spent serving the #DisabledCommunity." ~Unknown #MySeveralWorlds #StillDisabled #TheDisabilityGap
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#MEAction Network retweeted
Severe ME Artists @MEActNet Project 2026: More than 100 people with severe ME shared photos, drawings, writing and videos, creating a powerful collection of art and experiences from the severe ME community. meaction.net/post/honoring-s…
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#MEAction Network retweeted
Help advance #MECFS and #LongCOVID research by joining OMF’s StudyME, a free global participant registry that connects you with researchers conducting studies in these areas. 👉 Sign up today: omf.ngo/studyme/ Already part of StudyME? Please share this post 💙
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