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.

Our executive director, Laurie Jones is sending out some love this Valentine's weekend- in the form of refurbished Visib...
02/14/2026

Our executive director, Laurie Jones is sending out some love this Valentine's weekend- in the form of refurbished Visible bands! Those of you who won have been notified via email and the first round of bands are on their way! Thank you to visible.health!

What would your conversation hearts for our community say? Happy Valentine's Day! This is your reminder that you are lov...
02/14/2026

What would your conversation hearts for our community say? Happy Valentine's Day! This is your reminder that you are loved, valued, needed, and wanted.

The love, belief, acceptance, friendship, and support offered in this community is truly beautiful! It makes us stronger for one another as we come together to make this a better world for us all.

Take a moment and pass this along to someone in our community that you appreciate!



ID: Valentine's conversation hearts on a pink background. Text: Happy Valentine's Day! So thankful for you! Text on hearts in clockwise order starting at top left: hope, U R loved, Thank u, Crip Joy, Heart your support, I believe you, cozy vibes, rest w/ ME, spoonie friend 4ever, , Stop Rest Pace

As we look forward to honoring National Caregivers Day on Feb. 20th, we are excited to share three new resources for our...
02/13/2026

As we look forward to honoring National Caregivers Day on Feb. 20th, we are excited to share three new resources for our caregivers! See link in comments!

We offer two new recorded webinars! Two dedicated advocates and caregivers from our community, Kim Moy and Denise Lopez-Majano, share their practical advice from decades of caregiving for people with ME. Caregiving is immensely challenging, and Kim and Densie offer their compassionate understanding for caregivers. The third resource is a compilation of wisdom from caregivers who are sick themselves.

Resources- all links in article

- Top 10 Lessons From 20 Years of Caregiving with Kim Moy.

Kim Moy is the founder of Caregiver Wisdom, a volunteer, and caregiver for her husband who has ME. She has over 20 years of caregiving experience and leads the monthly Partner Caregiver Support Group for .

- Chronic Illness Caregiving for Youth, Teen, and Adult Children with Denise Lopez-Majano.

Denise is a caregiver for her two adult sons with Severe ME and has been facilitating ’s Caregiver calls for several years.

You can also find support through the two caregiver calls offered each month and our dedicated Facebook support group. All linked in the article!

We are very thankful we are for the amazing caregivers that we have in our community. We especially want to thank Denise Lopez-Majano and Jane Shiyah, who initiated our very first Caregiver Support Call over seven years ago, and Kim Moy, who started our Partner Caregiver Support Call.

We truly appreciate the many years they have been showing up and facilitating monthly caregivers meetings. We are so grateful for their time and effort in creating these webinars and new resource.



ID: Photos of Kim Moy (smiling Asian American woman with light-medium skin tone and graying hair, wearing a green sweater and multicolor scarf) and Denise Lopez-Majano (fair skinned, woman wearing glasses with graying, medium length hair wearing a light blue fleece top). Each photo has their name and webinar title underneath. Text above: Caregiving webinars now available. Text below: We are honored to offer three new resources for caregivers of people with ME or associated complex chronic illness.

The SAVE America Act was passed by the House yesterday. Next it will go to the Senate. Call or email your senator now i...
02/12/2026

The SAVE America Act was passed by the House yesterday. Next it will go to the Senate. Call or email your senator now if able.

In their statement to Congress, the National Coalition on Accessible Voting shared, "Federal laws require every part of the voting process to be accessible for disabled voters, from registering to vote to casting a ballot. The new barriers in these bills – limiting vote by mail, criminalizing some voter assistance, and adding burdensome voter registration practices – undermine accessibility, disenfranchise eligible voters, and weaken the foundation of our democracy."

See their full statement and plain language summary here: https://ncavote.org/resource/nosaveact/

They also link to an action you can take.

Here is some sample language if calling your senator:

"My name is (NAME) and I am a constituent living in (city/zip code). I am calling to urge Senator (name) to reject the SAVE Act, SAVE America Act, and/or MEGA Act.

As a disabled person (person with a disability/ caregiver), I agree with the National Coalition on Accessible Voting that explains federal laws require every part of the voting process to be accessible for disabled voters, from registering to vote to casting a ballot. The new barriers in these bills undermine accessibility, disenfranchise eligible voters, and weaken the foundation of our democracy.

Disabled people are not the only ones affected. The bills could disenfranchise millions of eligible US Citizens exercising their right to vote. Thank you for your time."



ID: Text-based graphic with light blue background and red and white accents with quote from the National Coalition on Accessible Voting included in the post. Text at the bottom encourages you to contact Congress to stand against the SAVE Act suite of bills.

Take action today! Contact your members of Congress using the linked form of give them a call! https://ncavote.org/resou...
02/11/2026

Take action today! Contact your members of Congress using the linked form of give them a call! https://ncavote.org/resource/nosaveact/

From the National Coalition on Accessible Voting:
"Disability and civil rights organizations are calling on Congress to stand against the SAVE Act, SAVE America Act, and MEGA Act. These bills will make it much harder for people with disabilities to vote.

If passed, these bills would:
• Limit vote-by-mail
• Limit who can give help to voters with disabilities
• Require hard-to-get documents, such as passports or birth certificates, to register to vote.

Millions of voters will face new barriers when trying to vote, including:

• Disabled people
• Older adults
• People with limited transportation
• People with limited access to documents

There is no evidence that Election fraud by noncitizens is a widespread problem.

However, there is clear evidence that these policies would block people (who ARE legally eligible) from voting. These polices would conflict with protections under the Americans with Disabilities Act and the Voting Rights Act that have been around for many years.

With major elections approaching, these policies threaten accessible voting and our democracy.

NCAV calls on Congress to reject these policies and protect accessible voting.

A vote is set to occur the week of February 11th."

We know accessible voting is a critical issue for our community. Thank you to the NCAV for their work!



ID: Simple graphic with blue background and yellow box with a paper that says vote going into a slit at the top. Text in white: Disability Rights Groups Warn Congress: SAVE Act Bills Would Block Millions From Voting Text in red oval underneath: Contact Congress Today!

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!

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Princeton, NJ
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https://linktr.ee/meactnet

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