Joined May 2014
5,025 Photos and videos
Pinned Tweet
This #MillionsMissing, we are #FrailAndFurious! Injustices are happening worldwide because ME is not taken with the seriousness we deserve. Let's come together to show the world how devastating this disease is. Join the fight: millionsmissing.org
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Join us for a community meeting TOMORROW - June 14th at 3:00 pm ET to hear about the next steps #MEAction is taking in US advocacy, and what steps you can take to be part of these efforts. ow.ly/5kv750ZablT #PwME #MillionsMissing #FrailAndFurious #MECFS
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Miranda shares her experience as a #pwME & shares her advocacy within the disability and unhoused community at #MillionsMissing. Miranda goes on to explain that Medicaid is the main pathway to get home care and home care is the main pathway to safety. youtu.be/sn6RWKmnT3Q
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From our friends at @PlzSolveCFS! Take action today by submitting a comment and contacting Congress. Thanks to Solve M.E. for organizing a response on this critical issue. #pwME #research #MECFS #longCovid
Replying to @PlzSolveCFS
5/ Deadline: July 13. You don't need to be an expert, just honest and, in this case, not hyperbolic Please share. Most people have no idea this is happening, but it will impact so many of us. #MEcfs #LongCovid #ProtectScience
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#MEAction Network retweeted
Have you contacted your MP to ask them to lobby @jamesmurray_ldn. Let us know if you have received a supportive answer, admin@meaction.org.uk. There is still time. Tag & lobby your MP & @jamesmurray_ldn. Info shorturl.at/I7Rwk #MyalgicEncephalomyelitis #VerySevereME
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Jaime Seltzer, Scientific Director at #MEAction, makes a powerful case for fighting against Medicaid work requirements that imperil people with ME at this year's #MillionsMissing. Full speech available here: youtu.be/VGmix8XT14s MECFS #Medicaid #disability #FrailAndFurious
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#MEAction Network retweeted
Karen Gordon bravely took part in our video that lit up London for the very severely ill and now she needs your help.
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Join us for a community meeting on Sunday, June 14th at 3:00pm ET to hear about the next steps #MEAction is taking in US advocacy, and what steps you can take to be part of these efforts. ow.ly/5kv750ZablT #PwME #MillionsMissing #FrailAndFurious #MECFS
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David shares at #MillionsMissing 2026 about his life with his wife Shaina, a #pwME (who also shared!). "Nobody should have to disappear just because they got sick. And nobody should be punished for loving someone who is.” Full speech: youtu.be/UE3U8O5rWcg #Caregiver #pwME
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#MEAction Network retweeted
Stop the harm, Stop the deaths, Start the service Share this video - lobby your MP and @jamesmurray_ldn! Find out how here shorturl.at/I7Rwk Let’s make our voices heard! #MyalgicEncephalomyelitis #VerySevereME youtu.be/YoCT_K66Ul0
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Jaime Seltzer at #MillionsMissing: "[Imposing Medicaid] work requirements in order to receive assistance is going to make so many people sicker. It's going to make so many people lose their lives. We need to fight against it with everything that we have." youtu.be/VGmix8XT14s
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Join the #MillionsMissing community for updates on U.S. advocacy. We have much to share - about our #FrailAndFurious campaign, and about HHS, NIH, and Congressional advocacy. Join us June 14th at 3 pm ET! Register here: us06web.zoom.us/meeting/regi… #Medicaid #pwME #Disability
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#FrailAndFurious campaign update: CMS just issued new guidelines on work requirements for #Medicaid & made it harder for people with ME/CFS, Long COVID, & IACCs to get exemptions. We are fighting! More info here: meaction.net/post/we-re-furi… #PwME #disability #MECFS
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“Self-Compassion as a Helpful Response to Your Loved One’s Suffering” is the focus for #MEAction's partner caregiver meeting on June 7 12 pm PT. ALL caregivers welcome. Charley Kakel will offer a talk & there will be breakout rooms. Email kim@caregiverwisdom.net to join.
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Shaina sacrificed to speak at #MillionsMissing so that we can prevent others from going through her horror in losing Medicaid. “I'm Shaina and I am and have been many things over my life... but I'm also a person with ME which colors everything." Video: youtu.be/EjzIf243OmQ
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#MEAction Network retweeted
Yes, not just a life inside #chronicillness but a life literally *inside*--a bedroom, a home, a dr office. A life that is not exclusively tragic but resilient, hilarious, & yes, beautiful. Thank you, David!
David joined #MillionsMissing with his wife Shaina who is a #pwME. He shares that it is a beautiful life but that it involves grief for the life they hoped hoped for. Full video on YT. Take action for disability marriage equality w @DREDF. dredf.org/marriage-equality-…
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David shares at #MillionsMissing about his life with his wife Shaina, a #pwME. See both their videos on our YT! We have support for #caregivers that include 2 different meetings a month, a support group, webinars, & more: meaction.net/caregivers Support our efforts if able!
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David joined #MillionsMissing with his wife Shaina who is a #pwME. He shares that it is a beautiful life but that it involves grief for the life they hoped hoped for. Full video on YT. Take action for disability marriage equality w @DREDF. dredf.org/marriage-equality-…
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#MillionsMissing 2026 included an event at HHS on May 12th. We took this time to educate about the reality of myalgic encephalomyelitis & Long COVID. @Dr_Haridopolos, Interim Surgeon General, came to our installation & spoke with advocates. Thankful for her willingness to listen.
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As always, it isn’t over - we are continuing to work hard to make sure that our policy needs are communicated fully, and translated into action. But we also want to celebrate the successes.
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#MEAction is working hard to advocate and educate around the critical issues in our community. You can support our advocacy efforts here: millionsmissing.funraise.org…

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