USA: News from #MEAction

[ahimsa]

#MEAction announces plans for their next Millions Missing campaign:

Pace to the Capitol: Our Biggest #MillionsMissing Campaign Yet

Pace to the Capitol: Our Biggest #MillionsMissing Campaign Yet

From your bed, your community, or DC, help us bring ME and Long COVID out of the shadows. Join the campaign today.

www.meaction.net

Our Pace to the Capitol campaign will run from October through May as we pace to the U.S capitol.

During these months, advocates will strategically place mini beds and big beds in public places in their local communities, including in front of state capitols, sparking conversation about the severity and needs of ME and Long COVID. Our campaign will culminate with a powerful display of 200 beds at the U.S. Capitol on May 12th.

But this campaign is about so much more than just beds. We have incredible momentum going for ME/CFS right now.

MEAction is working with Congress to get the ME/CFS Research Roadmap funded. We are collaborating with the Surgeon General's office to develop and disseminate ME/CFS educational materials. We are working in Hollywood and have set up an event to educate TV writers and showrunners about ME/CFS. We are working with State Medicaid leaders to protect Medicaid for our community. And, we are working with The Library of Congress to educate 95 libraries about ME/CFS as a disability that qualifies for services.

Join us in D.C., organize in your community or show up from home – or participate in all of them! All events will include at home actions.

You can change your mind if you register for the Home Team or the Hill Team now. Register either way, and we can always make adjustments.

• Register to join the Hill Team or the Home Team: Both are enormously important and both include at-home actions leading up to May 12th and the Hill team is for folks planning to travel to DC.

• Start a Fundraiser: Everyone who raises $150 or more will receive a pacing pack (t-shirts, swag, action guide, minibeds and more)that is centered on the “home team” or the “hill team,” which includes minibeds and a mini cardboard cut out of the capitol building. Don't worry, scholarships available soon!

"Stay tuned for upcoming events and actions you can take in the Pace."

 

[ahimsa]

#MEAction has posted more details about their "Pace to the Capitol" advocacy campaign:

How to Get Involved in Pace to the Capitol!

Pace, not a race: find your way to take action for the ME community. Hundreds have registered for Pace to the Capitol. Join us before May 12th!

www.meaction.net

Register at this link to get email about upcoming actions.

Note: Registration does not mean you have to do every activity that is sent via email!

This is a pace and not a race so we don’t expect everyone to do every action, and we will do our best to give you time to prepare. After years of advocacy work, there are so many avenues open to us right now and we are using this campaign to drive them home! Join us!

 

[ahimsa]

USA advocacy update from #MEAction on their work to stop Medicaid work requirements.

A Medicaid Win for Our Community in Court

A Medicaid Win for Our Community in Court

CMS’s narrow “medically frail” definition blocked

www.meaction.net

On October 29, a federal judge ruled that the Centers for Medicare & Medicaid Services (CMS) exceeded its authority when it added an extra hurdle to Medicaid’s “medically frail” exemption.

Under the law Congress passed, people with serious or complex medical conditions are supposed to be exempt from new Medicaid work requirements. CMS tried to add a provision to require them to prove they’re too sick to work 80 hours a month. The court said no.

For many people with ME/CFS and Long COVID, every extra paperwork burden could mean the difference between keeping and losing their health care. Read Politico article for more information.

The fight isn’t over. Work requirements still start January 1, other harmful parts of the rule remain, and CMS may appeal.

 

[Chandelier]

#MEAction announces plans for their next Millions Missing campaign:

Pace to the Capitol: Our Biggest #MillionsMissing Campaign Yet

Pace to the Capitol: Our Biggest #MillionsMissing Campaign Yet

From your bed, your community, or DC, help us bring ME and Long COVID out of the shadows. Join the campaign today.

www.meaction.net

"Stay tuned for upcoming events and actions you can take in the Pace."

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Wilhelmina Jenkins​

Wilhelmina’s Birthday Fundraiser​

​

26 Donors​

1.387,25 $​

raised of 200,00 $ goal​

​

On Thursday, November 12, I will be 77 years old. When I became ill with ME/CFS, I was 33. My health and my dreams crumbled to dust in my hands. When I was diagnosed 5 years later, I joined my local support group and committed myself to doing whatever I could so that this disease would be understood, treated, and hopefully cured.​

​

Here in 2026, far less progress has been made than I had hoped, and my ability to participate in advocacy has dwindled. I am now almost entirely bedbound. But my commitment has not wavered. This year, MEAction has begun a major campaign called Pace to the Capitol. For my birthday I am starting a fundraiser to support this campaign. I hope that you will join me. I am starting it off by donating $77 dollars, but if you can donate $7, $17, or any other amount, it will be appreciated and well used. Let’s keep pushing for fair treatment by our health agencies and research communities. The struggle continues!​

​

Pace to the Capitol

Join us!

pace.funraise.org

​

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[ahimsa]

#MEAction has a new article about the "video guide to pediatric ME/CFS" from #MEAction Maryland, a series of six medical education webinars featuring Dr. Peter Rowe. These have been recorded over the last couple of years with the most recent video recorded in June 2026.

Link to article:

Evidenced-Based Pediatric ME/CFS with Dr. Peter Rowe: An Interview with MEAction Maryland

Dr. Peter Rowe shares his expertise across 6 medical education videos

www.meaction.net

Link to the YouTube channel:

https://www.youtube.com/@MEActMaryland

 

[ahimsa]

#MEAction posted about two different events related to Medicaid policy changes. (USA related advocacy)

MEAction Staff are Fighting for Your Medicaid!

Check out the webinars staff are joining

www.meaction.net

Quick summary:

1) MEAction’s Advocacy Director, Ben HsuBorger, will be a panelist for a Grassroots Projects webinar scheduled for Monday, November 16, at 3 PM Eastern Time.

"Ben will discuss how people who are considered 'medically frail' could be exempt from Medicaid’s work requirements, what that process will look like, and the challenges of protecting vulnerable communities like ours."

Register here:

Welcome! You are invited to join a webinar: Medical Frailty Exemptions: Why They Matter for People with Disabilities and Older Adults. After registering, you will receive a confirmation email about joining the webinar.

H.R. 1 makes many changes to Medicaid, including new community engagement requirements. To get or keep Medicaid, some adults will need to work or take part in other approved activities. Some people will be exempt, meaning they will not have to meet these requirements. As states begin...

us06web.zoom.us

2) A recording of the Massachusetts ME/CFS & FM Association annual meeting is available. A link to that recording has already been posted on the forum here:

Post in thread 'USA: Massachusetts ME/CFS & FM Association news'

Nov 8, 2026

A recording of the Massachusetts ME/CFS & FM Association annual meeting, held on October 18, 2026, is now available.



More information is available on their website here:

Annual Meeting 2026 - Massachusetts ME/CFS & FM

massmecfs.org

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