#MEAction Network

Laurie Jones (white woman with long brown hair wearing an ivory sweater) smiles while holding up Visible bands outside on a deck.

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!

#PwME #StopRestPace

Background is a purple and peach gradient circle with black text that says: “Roses are red, Violets are slick. Call Congress to say: ‘ICE makes me sick!’ ” Below this, an arrow points to the URL “MakesMeSick.org” In the upper right corner is a photo of a purple heart with a starburst and sparkles. Along the lower edge is a row of pink triangles next to the Long COVID Justice logo.

We're supporting #MEAction's ICE Makes Me Sick campaign - take action today at MakesMeSick.org.

@meactnet.bsky.social

Our hearts are with all of you fighting for justice, on Valentines Day and beyond. We can’t do this alone, and we won’t leave anyone behind.

MakesMeSick.org
@meactnet.bsky.social

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, #MEAction, Stop Rest Pace

What would your conversation hearts for our community say?

Happy Valentine's Day! This is your reminder that you are loved, valued, needed, & wanted.

The love, belief, acceptance, & support offered in this community is truly beautiful!

#PwME #Spoonie #Valentine #PwLC

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.

As we look forward to honoring National Caregivers Day on Feb. 20th, we are excited to share 3 new resources for our caregivers - 2 webinars & a compilation of wisdom from caregivers who are sick themselves. Thank you to Kim Moy & Denise Lopez-Majano!

https://ow.ly/70Gp50YeANv

Quote from National Coalition on Accessible Voting: 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." Text encourages contacting Congress against SAVE Act.

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. The National Coalition on Accessible Voting statement, plain language summary, & link to action is here: https://ncavote.org/resource/nosaveact/
#DisabilityVote

Housing insecurity is becoming more prevalent in our community (based on what we are hearing.) I am so very sorry for what you experienced.

A vote is set to occur the week of February 11th. The House could vote as soon as today.

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

#PwME #Disability #Vote #DisabilityVote

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!

Contact Congress! ncavote.org/resource/nos...

From the National Coalition on Accessible Voting:
Disability & 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.

“With this level of a funding cut, states are going to have to make some tough choices about how to deal w/ the loss of federal funds. We know that home & community care for people w/ disabilities is a significant source of Medicaid funding. Almost all the services are optional for states to cover.”

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.”

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.

How people with disabilities could bear the burden of Medicaid funding cuts According to the nonpartisan Congressional Budget Office, President Trump’s One Big Beautiful Bill Act will slash more than a trillion dollars in federal spending from Medicaid and the Children’s Heal...

MEAction launched a campaign regarding upcoming changes to work requirements for those on Medicaid. We will be sharing education about Medicaid to help us all understand.

Check out this @pbsnews.org segment, part of Judy Woodruff’s Disability Reframed series: www.pbs.org/newshour/sho...

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.
https://www.meaction.net/post/why-we-launched-an-ice-campaign

Information found in post on gray background with blue and yellow accents. Text: RECOVER R3 Seminar Long COVID trajectories in adults Tuesday Feb, 10, 2026 12:00 pm ET 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.

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/KumH50YbYa0

#RECOVER #LongCovid #pwME #pwLC #MECFS

New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.

Please share widely.

For all the info and survey link, head on over to

www.physiosforme.com/o2survey

We have heard so many stories of why telemedicine matters to you personally, and we are thrilled that this has extended.

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

A doctor on a laptop screen (woman with medium skin tone and short dark hair wearing a white lab coat) while a person looks (only shown from behind- dark hair and orange top) on as if have an appointment with the medical professional. Text: Telemedicine coverage has be EXTENDED!

Telehealth flexibilities for Medicare are extended until Dec. 31, 2027. As many of you were able to express to elected officials, telemedicine is a crucial service for our community.

We will continue to advocate to make telehealth expansions PERMANENT! www.meaction.net/post/more-gr...

I am so sorry that your losses keep compounding.

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 writing prompts in the description.

Writing — Marisa Renee Lee

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. www.marisareneelee.com/writing

Photo of Marisa Renee Lee at top (Black woman with curly hair with a big smile on her face wearing a black top and looking at the camera). Text underneath: Dealing with Grief and Chronic Illness: a workshop with Marisa Renee Lee. Now available from #MEAction

Grief and complex chronic illness often go hand in hand. We know we are feeling some heavy grief right now.

We have a workshop on grief with author Marisa Renee Lee available for you: youtu.be/0EbpE9Zj0V0

#pwME #pwLC #Spoonie #Grief

Check out this helpful resource from our friends at @batemanhornecenter.bsky.social!

#pwME #disability #UnitedForME

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!

It’s been a long road to make the ME/CFS Research Roadmap a reality. Laurie Jones, #MEAction 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 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.

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. #MEAction is continuing to fight on this front.

#MEAction 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.

Thank you to everyone who gave their valuable time and energy to those meetings!

A large alarm clock with a road going behind it against a cream background. Text: The Clock is Ticking. The NIH has been directed by Congress to come up with a plan to implement the ME/CFS Research Roadmap in 6 months.

The clock is ticking. The NIH now has 180 days to develop an implementation plan for the ME/CFS Research Roadmap. In 6 months, we SHOULD have a plan to implement the NIH’s roadmap for biomarkers, treatments & clinical trials.

#MEAction partnered with #NotJustFatigue to secure this support.

#NIH

Black-and-white image of a manual wheelchair user, seen from behind, positioned in a doorway that opens to the community outside. The setting appears institutional, with worn walls and a narrow passage. Large text at the top reads, “Stop the Attack on Section 504” in bold and urgent font.

Nine states are attacking Section 504 and the right of disabled people to live in the community. This lawsuit threatens decades of disability rights upheld by the Supreme Court in Olmstead. 

Stop segregation and institutionalization. 

Learn more: https://bit.ly/section-504-attack