#MEAction

▶

▶ 746 ❤ 0 💬 0

This #MillionsMissing was powerful. "Medical Frailty" was our rallying cry to advance research and protect Medicaid. We met with the Acting Chief of Staff to the U.S. Surgeon General, and connected with the Centers for Medicare & Medicaid Services. We also had 11 Congressional meetings to advocate for appropriations to fund the ME/CFS Research Roadmap, alongside #NotJustFatigue We are very excited about the relationships we have built with Congressional Offices, and the strategy we’re taking away. Real wins. Real relationships. Real next steps. Our state-by-state campaign to save Medicaid for people with ME and Long COVID continues all year. The path is not simple, but the relationships we built this week and our grassroots plan give us a real shot. Unfortunately, our meeting with the NIH Director needed to be rescheduled for June. But this could be a blessing in disguise because we may have more information on appropriations by then that will inform our strategy going into the meeting. Help us keep fighting for the healthcare our community deserves. We have a NEW $7,000 matching grant to help us fund our advocacy. Every $ will be matched from now UNTIL MONDAY. SEE LINKTREE! #MillionsMissing #FrailAndFurious #MECFS #Medicaid #pwME Video description: Video opens panning over cots with red blankets and decorated pillowcase with large signs containing text in between. Then pans to the HHS building. People are walking around the display and talking to one another. Then photos of speakers speaking into a microphone and those listening are shown. Some are standing. Some are in wheelchairs. No spoken word. Text at beginning: on May 12th, 2026 MEAction demonstrated at HHS for MillionsMissing. Text at end: Frail and Furious MillionsMissing meaction dot net

▶

▶ 1.7K ❤ 0 💬 0

This #MillionsMissing, we are FRAIL and FURIOUS! Injustices are happening to people with ME and Long COVID around the world. Myalgic encephalomyelitis (ME) is not taken with the seriousness we deserve. Join MillionsMissing 2026: LINK IN BIO! Government and healthcare systems around the world fail to classify ME (AKA ME/CFS) as a serious, complex medical condition, leading to significant neglect in medical care and social services. This May, we will come together to show the world how devastating ME and Long COVID truly are – and we need your help! We are asking you to share your story about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve. We are claiming the word “FRAIL” this year in part because of our campaign to fight to protect government health insurance (Medicaid) for people in the U.S. who will be forced to work 80 hour months unless they can prove they are “medically frail.” We will have coordinated online actions for you to take to help us get our message out! Share YOUR story! See all the details in our toolkit. We will also have a small and meaningful in-person action in the US at the Department of Health and Human Services in Washington, DC. You are invited to attend, especially if you live near the DC area. #FrailAndFurious #pwME #MyalgicEncephalomyelitis #LongCovid Video description: Laurie Jones (white woman with brown hair pulled back wearing a colorful floral shirt) speaks directly to the camera with a plain beige background wall.

▶

▶ 5.6K ❤ 0 💬 0

#MEAction's Director of Scientific & Medical Outreach, Jaime Seltzer @exceedhergrasp1, ends her presentation about #MEAction’s work on decreasing diagnostic uncertainty in ME/CFS at The Society to Improve Diagnosis in Medicine's 2023 Patient Summit. Jaime is sharing what continues to drive her - her mother, her niece, her longtime friend...then goes on to the part recorded here...you - our community- #pwME #pwLC. #MyalgicEncephalomyelitis #MECFS #LongCovid #PatientLed #SIDM #MedEd Video description: Jaime Seltzer stands at a podium wearing a face mask, glasses, and jacket/blazer.