#MEAction Network

A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing

[#MEAction Network @MEActNet]

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

[#MEAction Network @MEActNet]

#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

[#MEAction Network @MEActNet]

“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.

[#MEAction Network @MEActNet]

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

[Michelle @behindasurface]

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!

[#MEAction Network @MEActNet]

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!

[#MEAction Network @MEActNet]

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 Network @MEActNet]

#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

[#MEAction Network @MEActNet]

#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.

[#MEAction Network @MEActNet]

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 Network @MEActNet]

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.

[#MEAction Network @MEActNet]

@corywysz @tiltify We appreciate it!!

[CoRy Wyszynski | Photo Alchemist @corywysz]

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

[#MEAction Network @MEActNet]

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!

[#MEAction Network @MEActNet]

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

[#MEAction Network @MEActNet]

@curemecfs @saffronandsky Also @BatemanHorne crash survival guide might have some helpful resources https://t.co/yIq7ugMMJf

[#MEAction Network @MEActNet]

@curemecfs @saffronandsky And a couple more https://t.co/aL1w0QZxfN

https://t.co/29wf4DsvQM