#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

[#MEActionMaryland @MEActMaryland]

Slides - Transcripts - Sources

Now available!!

Joint Hypermobility / EDS in Pediatric ME/CFS
with Dr. Peter Rowe (episode 3)

* * * *
📢Coming Soon 📢
Capstone Q & A with Dr Rowe
~ an hourlong interview with pioneer of pediatric ME/CFS

[#MEAction Network @MEActNet]

Juneteenth is a moment to celebrate freedom and reckon honestly with who that freedom has and has not reached. For the ME and Long COVID community, that reckoning is personal.
Full article: https://t.co/wnuQ5L8SvT

#Juneteenth #pwME #pwLC #Disability #Medicaid

[#MEAction Network @MEActNet]

We have a Medicaid #FrailAndFurious update for you! https://t.co/byCrq7lD1l

We've outlined the key facts you need to know, the actions we're taking, and ways you can help protect healthcare access for our community.

#pwME #Medicaid #MECFS #longCovid

[#MEAction Network @MEActNet]

Our Severe ME Artists Project 2026 is coming in recognition of #SevereMEday! Full details: https://t.co/eGZqvGPK5F

Please note: many people with #SevereME can no longer practice art. Others have been able to find creative ways to continue. We hold space for those grieving. #pwME

[Tom Kindlon @TomKindlon]

6:30pm in Great Britain and Ireland
#MEcfs #SevereME

[#MEAction Network @MEActNet]

People with serious or complex medical conditions should be exempt from Medicaid work requirements. Period. Join us by submitting your own public comment by July 31st using our template: https://t.co/sLlVRkrFKE .

#FrailAndFurious #Medicaid #pwME #pwLC #spoonie #disability

[#MEAction Network @MEActNet]

Attention #caregivers! You are invited to join our ME Caregivers Support Call on the 3rd Saturday of the month- June 20th at 1:30 pm ET. All caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions are welcome! https://t.co/SMobGEMNYT

[#MEAction Network @MEActNet]

Welcome to #MedicaidMonday! MEAction is going to be sharing important information about Medicaid, especially focusing on the new work requirements on Mondays this summer.

Huge thanks to @corywysz!

Our #FrailAndFurious campaign is happening all year!
https://t.co/hwD5QCzsyM

[#MEAction Network @MEActNet]

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. https://t.co/YcDlNR7pP2

#PwME #MillionsMissing #FrailAndFurious #MECFS

[#MEAction Network @MEActNet]

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.
https://t.co/nmBBRSjdFC

[#MEAction Network @MEActNet]

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

[Solve ME/CFS Initiative @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

[#MEAction Network UK @MEActNetUK]

Have you contacted your MP to ask them to lobby @jamesmurray_ldn. Let us know if you have received a supportive answer, [email protected].

There is still time. Tag & lobby your MP & @jamesmurray_ldn. Info https://t.co/TZPftobVEq

#MyalgicEncephalomyelitis #VerySevereME

[#MEAction Network @MEActNet]

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: https://t.co/fEzEjikQ5f

MECFS #Medicaid #disability #FrailAndFurious

[#MEAction Network UK @MEActNetUK]

Karen Gordon bravely took part in our video that lit up London for the very severely ill and now she needs your help.

[#MEAction Network @MEActNet]

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. https://t.co/YcDlNR7pP2

#PwME #MillionsMissing #FrailAndFurious #MECFS

[#MEAction Network @MEActNet]

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: https://t.co/2BzHwuXk3R

#Caregiver #pwME

[#MEAction Network UK @MEActNetUK]

Stop the harm, Stop the deaths, Start the service

Share this video - lobby your MP and @jamesmurray_ldn!

Find out how here https://t.co/TZPftobVEq

Let’s make our voices heard!

#MyalgicEncephalomyelitis #VerySevereME

https://t.co/e0smlSW77a

[#MEAction Network @MEActNet]

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."

https://t.co/fEzEjikQ5f

[#MEAction Network @MEActNet]

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: https://t.co/uoM1q7X1iZ

#Medicaid #pwME #Disability

[#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