The #MEAction Network

The #MEAction Network is an international network of patients empowering each other to fight for health equity

is an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome.

MEAction launched a campaign at the end of 2025 regarding upcoming changes to work requirements for those on Medicaid. T...
02/10/2026

MEAction launched a campaign at the end of 2025 regarding upcoming changes to work requirements for those on Medicaid. To help understand all the implications of this, we need to understand Medicaid. We will be sharing some education around Medicaid as a whole and the work requirements specifically to help us all understand.

Check out this PBS NewsHour segment that is part of Judy Woodruff’s Disability Reframed series: “How people with disabilities could bear the burden of Medicaid funding cuts.”

https://www.pbs.org/newshour/show/how-people-with-disabilities-will-bear-the-burden-of-medicaid-funding-cuts

This segment focuses on The Bright Center, a day program in Virginia for disabled adults, as one of the many examples of how Medicaid funding helps and what losing that funding means.

Woodruff shares that states are bracing to lose more than $900 billion over the next decade.

Alice Burns of KFF shares, “This is the single biggest rollback in federal support for health care that we have ever seen. And people with disabilities are much more likely to rely on programs like Medicaid than people without disabilities.”

Burns goes on to share, “With this level of a funding cut, states are going to have to make some tough choices about how to deal with the loss of federal funds. And we know that home and community care for people with disabilities is a significant source of Medicaid funding. And almost all the services are optional for states to cover.”

This program left us with this fact: Over 600,000 Americans were on waiting lists for Medicaid’s Home and Community-Based services program last year.

There is a very real human cost to these Medicaid cuts.

Our community’s reaction to launching an ICE campaign has been largely positive, but we want to explain further why we w...
02/10/2026

Our community’s reaction to launching an ICE campaign has been largely positive, but we want to explain further why we were compelled to do this. Ultimately, we are joining in the chorus of voices urging Congress to halt further appropriations for ICE and to reinvest those billions of dollars back into healthcare and disability services, which has a huge impact on our community.

We are also speaking out against the cruel & unconstitutional harms we are seeing perpetrated against people with disabilities by ICE.

Congress has to pass a funding bill for DHS by Feb. 13 to avoid another funding lapse. You can contact Congress demanding that money allocated to ICE be better spent on healthcare using our tools (co-sponsor Long COVID Justice) https://actionnetwork.org/letters/ice-makes-me-sick/

To put this in context: Congress cut $1 trillion dollars from Medicaid over 10 years, as well as gutted home and community based services that tens of thousands of people in our community rely on to survive. Meanwhile, in the same bill that stripped money from Medicaid, Congress allocated $85 billion to ICE.

Tens of millions of vulnerable Americans are set to lose their health insurance and get sicker from these budget cuts. The nonpartisan Congressional Budget Office estimates that 16 million people will lose their health insurance from these recent cuts to Medicaid and the Affordable Care Act (ACA) by 2034. A Yale university study estimates that tens of thousands of people will die annually due to these Medicaid cuts.

Medicaid work requirements will be particularly harmful to the ME community forced to prove we are too disabled to work – which is why we launched our Freakin Frail campaign to ensure our community keeps its access to Medicaid after years of already fighting for an accurate diagnosis and disability benefits.

With the money given to ICE, we have seen horrible acts committed against caregivers and people with disabilities. ICE has stopped paying for detainee medical treatment, which will lead to more death and worsened health outcomes for people in our government care. Our Minnesota chapter members are also affected on the ground.

Thank you for your precious time and energy.

Register for tomorrow’s RECOVER R3 Seminar, “Long COVID trajectories in adults,” to be held Tuesday, February 10th, 2026...
02/09/2026

Register for tomorrow’s RECOVER R3 Seminar, “Long COVID trajectories in adults,” to be held Tuesday, February 10th, 2026, at 12:00 pm ET. https://ow.ly/nI1X50YbY9W

"In this seminar, panelists will share findings from the RECOVER adult observational study about clinical presentations of Long COVID and its progression over time, including different symptom patterns. Panelists will discuss from their perspectives what these findings mean for the diagnosis of Long COVID, patient care, and clinical trials."

Panelists for the seminar include:

- Sarah Donohue, PhD, MPH, University of Illinois College of Medicine
- Timothy Henrich, MD, University of California San Francisco
- Mady Hornig, MD, MA, RECOVER Patient and Caregiver Representative; The Feinstein Institutes for Medical Research, Northwell Health; Massachusetts Institute of Technology
- Tanayott (Tony) Thaweethai, PhD, Massachusetts General Hospital, Harvard Medical School

We want to thank you for taking action throughout the last year on telemedicine. As so many of you were able to express ...
02/06/2026

We want to thank you for taking action throughout the last year on telemedicine. As so many of you were able to express to elected officials, this is a crucial service for the disability and chronic illness communities.

We have great news that the latest funding bill finalizes several key healthcare extenders including the Medicare telehealth program (until December 31, 2027) and the Acute Hospital Care at Home waiver (until September 30, 2030).

We have heard so many stories of why telemedicine matters to you personally, and we are thrilled that this has extended for two years. Of course, we are going to continue to advocate to make telehealth expansions PERMANENT!

Thank you again for taking action! Let’s celebrate this key win and keep doing the work together!

Grief and complex chronic illness often go hand in hand. We know we are feeling some heavy grief right now. We have a wo...
02/05/2026

Grief and complex chronic illness often go hand in hand. We know we are feeling some heavy grief right now. We have a workshop available for you! Link in our comments.

Executive Director, Laurie Jones, welcomes author Marisa Renee Lee for a workshop on grief. Marisa uses her own experience of dealing with grief in many forms to help connect with those on the call. She provides writing prompts to help members process their own grief and then members of their community share their own words.

Marisa is open about dealing with Long COVID now as well as her pregnancy loss and loss of her mother in her writing. Marisa Renee Lee is the author of Grief is Love and Waiting for Dawn- both now available.

The video is captioned and you can also just listen without watching. There are no notes on a screen that you would need to read. We also added the prompts in the description.

Check out the facts and resources below. Head to makesmesick.org to find ways to take action.
02/05/2026

Check out the facts and resources below. Head to makesmesick.org to find ways to take action.

The clock is ticking. As of yesterday, the National Institutes of Health has 180 days to develop an implementation plan ...
02/04/2026

The clock is ticking. As of yesterday, the National Institutes of Health has 180 days to develop an implementation plan for the ME/CFS Research Roadmap. In six months, we SHOULD have a plan to implement the NIH’s roadmap for biomarkers, treatments and clinical trials for ME/CFS.

partnered with Notjustfatigue to secure this support from the Senate. state chapter members and advocates attended meetings with congressional offices to explain the importance of ME/CFS research funding, helping to make this language in the L-HHS come to fruition.

NEXT STEPS: This pressure from Congress is just one piece in the puzzle to getting the roadmap funded, however. We still need NIH to allocate ACTUAL FUNDING to undertake the research. is continuing to fight on this front.

We sent a letter to the NIH Director calling on him to allocate $50 million of discretionary funding to the roadmap - funding from the Office of the Director - and he has agreed to meet with us to discuss the plan and funding. We are currently scheduling a meeting with him, and will keep you posted.

It’s been a long road to make the ME/CFS Research Roadmap a reality. Laurie Jones, executive director, was on the ME/CFS Roadmap Committee and witnessed many experts come together to create this most comprehensive, strategic plan for ME/CFS research to-date.

We still have a lot to fight for in terms of getting the funding we deserve, but we are very committed to making that happen. We deserve treatments, clinical trials, and care. THANK YOU to everyone who has taken action with us to get us one step closer to getting the roadmap funded!

We are thrilled to announce a virtual book reading featuring Shalida Askanazi,  ’s own Creative Arts & Community Manager...
02/03/2026

We are thrilled to announce a virtual book reading featuring Shalida Askanazi, ’s own Creative Arts & Community Manager. Her memoir, That Girl’s in a Wheelchair, just launched yesterday! Join us online February 20th at 3 pm ET: https://www.meaction.net/event-details/virtual-book-reading-with-shalida-a-askanazi

An Afro-Latina disabled writer, Askanazi explores disability, culture, and identity through lived experience, centering what it means to navigate the world in a wheelchair while claiming space as a woman of color.

We are also excited to share that Shalida was named one of Cleveland Magazine’s Most Interesting People 2026! Cleveland Magazine shares: “Through her unflinching honesty and sharp sense of humor, Shalida A. Askanazi is changing how people talk about disability and identity.” We love that!

The reading offers visibility, connection, and affirmation for disabled voices too often left unheard. Attendees will have the opportunity to receive a signed copy of the book.

A quick update to our recent call to action to demand that Congress stop bankrolling ICE violence while slashing our hea...
02/02/2026

A quick update to our recent call to action to demand that Congress stop bankrolling ICE violence while slashing our healthcare and home care.

Contact your Representative in the House TODAY to let them know you oppose more money to ICE.
The House of Representatives will be voting—likely sometime Monday or Tuesday—on the budget as passed by the Senate last Friday. In that vote, the Senate separated Department of Homeland Security funding from the rest of the budget. It gives them two weeks of funding DHS to come to agreement on what will happen next in funding ICE.

We have added the option of contacting your representative to our easy-to-use tool. (co-sponsored by Long COVID Justice): https://actionnetwork.org/letters/ice-makes-me-sick

We also have call scripts you can use. Check out our take action guide based on battery/energy level as well.

For more information on this action, please see the past post/ email/ article.

*Telehealth update: An extension of increased telehealth coverage for Medicare until December 31, 2027 passed the House and then the Senate and now back to the House. If it stays separated from DHS funding as the Senate chose, it should pass the House again. You can contact your representative and explain telehealth is important to you and you want DHS funding to be kept separate from other funding measures.

Wow! What a lovely community gathering we just had! For all who were unable to attend, we wanted to offer an online comm...
02/01/2026

Wow! What a lovely community gathering we just had! For all who were unable to attend, we wanted to offer an online community participation option!

We went through some community-sourced questions and ended this way allowing everyone to choose 1 of these 2 final questions:

1. What is giving you hope now? (if that was too heavy)

2. What is you favorite way to eat potatoes?

And yes, some of us concluded potatoes are giving us hope.

Shout out to Lynn and Stephanie for these two great questions to end on and to all those who provided other questions ideas!

We also want to let you know we took a moment of silence and sent out our love and hope to all those unable to attend, to those too severe to even know we exist, to those lonely and hurting in dark rooms. We also remembered those we have lost and took some time to just breathe in silent community.

Do you have a favorite get to know you question? We would love your suggestions! We hope you can join us on Sunday at 12...
01/30/2026

Do you have a favorite get to know you question? We would love your suggestions! We hope you can join us on Sunday at 12 pm PT/ 2 pm CT/ 3 pm ET/ 8 pm GMT for a virtual community event. Register at link in comments.

We are aiming to keep it a gentle gathering - a little slower, quieter - but with the chance to leave feeling like you just spent time in great company and have new friends.

So leave those ideas below! A question or two safe for a group - no deep, dark secrets revealed! We love our extroverts who come ready to dive in and also want to encourage our introverts or those less comfortable on this type call to join in.

Come as you are! Camera off or on. Speak or just listen. Join from your bed or couch. Maybe have a cozy blanket and favorite beverage.

Looking forward to just existing in one another's company for a bit!

For those unable to attend a call, would you be interested in a question asked on social media that people can type an answer and get to know each other that way? If so, which social media format works best for you?

Address

Princeton, NJ
08540

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm
Saturday 12pm - 4pm
Sunday 12pm - 7pm

Website

https://linktr.ee/meactnet

Alerts

Be the first to know and let us send you an email when The #MEAction Network posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to The #MEAction Network:

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram