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
ALT New Frail and Furious logo plus the MEAction logo on red slightly swirled background. "Frail and Furious" is shown on a swath of white paint. Underneath is the text "#MillionsMissing" but the second I is the outline of a person. MEAction logo is a circle with the text #MEAction in the circle.
ALT Graphic in red and white about virtual community meeting for #MEAction scheduled on June 14, 2026, at 3:00 PM ET with optional cameras and required registration. Photo of 4 people in an online meeting on a screen. Text: community meeting June 14, 2026 3 pm ET Registration required. meaction.net Virtual meeting- cameras optional.
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
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
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
ALT Urgent alert about a government rule threatening to halt ME/CFS research with a July 13, 2026 deadline to act.
ALT A woman's image, lying in bed with a breathing tube is projected under a bridge with the London Eye in the background.
ALT The words 'NOWHERE TO GO' are projected under a bridge with the London Eye in the background.
ALT A photograph of James Murray with white text on red background - 'James Murray Secretary of State for Health' in white is projected under a bridge with the London Eye in the background.
ALT Quote from Jaime Seltzer at #MillionsMissing. Photo: white woman with long curly hair wearing a red top & glasses. Text: "For people who are saying that in order to receive service from the government, you have to do labor, when performing physical and cognitive labor is what makes ME worse, sometimes permanently, is an incredible lack of understanding and an incredible injustice...
It's going to make so many people lose their lives. And we need to fight against it with everything that we have.“
Karen Gordon bravely took part in our video that lit up London for the very severely ill and now she needs your help.
ALT Karen Gordan, a white women with a black cloth over her eyes lies in a hospital bed. The photograph is projected onto the side of Blackfriars station in London.
ALT A photograph of James Murray Secretary of State for Health (white text on red background) is projected onto a wall wit the Houses of Parliament in the background at night.
ALT The word Ignored is projected onto a building in London with St Paul's Catherdral in the background lit up at night.
ALT Graphic in red and white about virtual community meeting for #MEAction scheduled on June 14, 2026, at 3:00 PM ET with optional cameras and required registration. Photo of 4 people in an online meeting on a screen. Text: community meeting June 14, 2026 3 pm ET Registration required. meaction.net Virtual meeting- cameras optional.
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
ALT Quote with a photo. Photo of David- a Black man wearing glasses, a red Millions Missing shirt, and jeans and is speaking into a microphone. Text: “Nobody should have to disappear just because they got sick. And nobody should be punished for loving someone who is.” David speaks about what he has learned as a spouse and caregiver to his wife Shaina who has ME.
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
ALT Announcement for the 2026 #MillionsMissing virtual community meeting on June 14 at 3 PM ET, requiring registration and hosted by #MEAction. Text with white background overlaid on a photo that you can only see as border.
ALT Laptop screen shows CMS.gov announcing Medicaid work requirements framework alongside a large stack of papers representing nearly 400 pages of guidance. Text: MEAction is reviewing every detail, working with partners, and preparing a strong public response. We are responding by pursuing parallel advocacy actions at both the state and the federal level. See article for full details.
“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.
ALT Graphic of person on a couch with laptop and screen they are looking at showing behind them. That screen has four people showing as if on a virtual call. Text: #MEAction Partner Caregiver Support Call 1st Sunday of every month 12 pm PT/ 3 pm ET
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
ALT Woman with medium to dark skin tone (Creole) in wheelchair wearing a red jacket, red tee, jeans and black boots speaks into a microphone, Text underneath: “I'm Shaina... I am an eighth generation New Orleans Creole. I'm a wife. I've been an actor. I've been a writer and a reader, cat lover, but I'm also a person with ME which colors everything.”
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-…
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!
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-…
#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.
ALT Dr. Stephanie Haridopolis engaging with advocates at a #MillionsMissing event supporting ME, Long COVID, and chronic disease awareness. 5 photos total showing Dr. Haridopolis listening to advocates. Top left clockwise: Dr sits on cot listening to advocate sitting on ground. Dr stands and listens to advocate speaking to her standing. Dr looks at book while sitting on cot. Dr stands speaking to advocate. Dr sits on cot while speaker speaks. Text in center: Dr. Stephanie Haridopolis, now the Interim U.S. Surgeon General, joined us for #MillionsMissing at HHS. She talked with advocates, listened to our stories, and spoke in support of people with ME, Long COVID, and the chronic diseases.
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.
#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…