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: https://t.co/Thxd67Jdyd
#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: https://t.co/3wSDxIlC4u
#PwME#disability#MECFS
“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 [email protected] to join.
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: https://t.co/TGkV1FcGVk
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 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: https://t.co/kQjBXOjeZx
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. https://t.co/tos8bMppVC
#MEAction is working hard to advocate and educate around the critical issues in our community. You can support our advocacy efforts here: https://t.co/yhe1YCd9Ya
#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.
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.
Katie shares the power of our community as she shares her story with #LongCOVID & #ME at #MillionsMissing. https://t.co/GqoLmCYX1o
Looking for community? Join us at #MEAction. Sign up for emails: https://t.co/ksBaVflZKL
CONTENT NOTE: Medical euthanasia mentioned.
Raising money for @MEActNet ! Donations are still open until May comes to a close. If ya can, check out my @Tiltify | Everything helps. https://t.co/lHubUQAGAJ
It is the unofficial start to summer! Time to help each other survive the heat. What are your most needed items?
Temperature dysregulation is a common symptom in ME, making it even harder.
For those doing better in the heat- yay! We celebrate with you. Now pass me my fan!
Great free read for this long weekend during #MEAwarenessMonth! Charley Kakel shares his beautiful short story “PenPals” with us in honor of #MillionsMissing.
Charley’s wife, Lauren, has #SevereME.
Snuggle in! Print & audio: https://t.co/IZ8uVF35BR
#MemorialDay#pwME