The #MEAction Network

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.

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.

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.

02/01/2026

Join us today at 12 pm PT/ 2 pm CT/ 3 pm ET 8 pm GMT for our virtual Keep The Light Community Event! Come as you are and we can all be encouraged by gentle time together!

Register: https://www.meaction.net/event-details/keep-the-light-community-gathering

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?

01/30/2026

Craving some gentle time together in community? Us, too! We know there is a lot going on in the world and we are glad to provide some time for us to come together and be a light for one another! (A very gentle light ...metaphorical light only for us light sensitive folks!)

Join us on Feb. 1st at 12 pm PT/ 2 pm central/ 3 pm ET/ 8 pm GMT for our Keep the Light virtual community event. https://www.meaction.net/event-details/keep-the-light-community-gathering

We have a few things planned that we think you will enjoy and we are leaving time to just exist in community. We can talk...have a moment (or more) of silence together. We will have some questions to help get the conversation going.

Please come as you are! Pjs are fine. Camera off or on. No pressure! Grab a cup of electrolytes or tea and your coziest blanket or a fan ...whatever you need. Pets are welcome to join in.



Image description: A soft cozy bed with very soft lighting and a small lantern bedside. A small arrow with a heart points to the pillow. Text overlaid: Craving some gentle time in community? We saved you a spot! Join us for our Keep The Light virtual community event on February 1st at 3 pm ET!

01/29/2026

Like you, we have been watching horrors unfold especially in Minnesota. We have been checking on our Minnesota community and sending all our love and support. This situation is heartbreaking and sickening.

We are sick of ICE. We are sick at how disabled people and their caregivers are being treated. We are sick of how Congress has poured staggering sums into ICE—now the highest-funded U.S. law enforcement agency—while radically slashing healthcare and home care Americans rely on.

We’ve heard your requests to find ways to help, so we’ve created a campaign, co-sponsored by Long COVID Justice, so you can contact congress, sign an open letter, and share on social media. We also share resources and groups on the ground that you can support.

FIND ALL INFO HERE: makesmesick.org

Orgs on the ground are calling on us to contact our senators ahead of the upcoming budget vote for the Department of Homeland Security. They are asking that we bear witness and spread the word. They need financial support and people to show up in person, if able.

Here is what we can do:
- We have written a letter to senators and invite other orgs (especially our fellow disability-led orgs) to join in. Email us at advocacy@meaction.net to sign.
- We are offering our community a simple way to write their senators and if able, a call script to call them.
- We provide social media scripts if you want to use them to spread the news.
- We provide a list of resources. We encourage you to amplify the work of the boots on the ground.
- We offer a list organized by “battery level” of how you can take action.

We invite you to take part however you are able.



ID: Black square with white text. "ICE makes me sick. Fund healthcare not violence. makesmesick.org"

01/28/2026

Join our Partner Caregiver Support Group meeting this Sunday- February 1st at 3 pm ET.

Take a look at the post below to learn more!

https://www.meaction.net/event-details/meaction-partner-caregiver-support-call-2026-02-01-12-00-1

When caregiving becomes the center of everything, it’s easy to lose sight of the relationship beneath it.

Many caregivers find themselves managing symptoms, schedules, and decisions—while the parts of the relationship that once felt natural and alive slowly fade into the background.

Caregiving is about doing.
Relationships are about being.
And when survival takes over, the being can get lost.

Join us for our monthly support group meeting this Sunday, where we will discuss “Reconnecting with the Relationship Beneath Caregiving.”

🗓 Sunday, Feb. 1
⏰ 12–1 p.m. PST / 3–4 p.m. EST / 8–9 p.m. GMT
🌺 Caregiver Wisdom Monthly Support Group / 's partner caregiver support group (all caregivers welcome!)
❤️ Reconnecting With the Relationship Beneath Caregiving

Ahead of Valentine’s Day, we’ll explore easy, realistic ways to stay connected as partners and family members—without adding more to your plate.

Together, we’ll reflect on:
• What feels lost or quietly grieved
• How we can show up as a partner/family member—not a caregiver
• What kind of connection is still possible now
• Small moments of love or affection that don’t require extra energy

We’ll also break into small groups for deeper, more personal sharing—a part of the meeting many caregivers value deeply.

While we center on caregivers of loved ones with ME/CFS, Long COVID, and related illnesses, all caregivers are welcome.

If you’re longing for connection, understanding, or simply a place to breathe—this space is for you. 💙

Email me at kim@caregiverwisdom.net or DM me if you’d like to join us.



The Network Bateman Horne Center Solve MECFS Initiative Open Medicine Foundation Massachusetts ME / CFS & FM Association The Sick Times Long Covid Families Long Covid Kids COVID-19 Longhauler Advocacy Project Patient-Led Research Collaborative World ME Alliance EDS Canada Foundation Emerge Australia Inc RTHM

01/26/2026

How is everyone affected by Winter Storm Fern? Please see information from our friends at The Partnership for Inclusive Disaster Strategies!

Disabled, impacted by the winter storm & need help? Discapacitade, impactade por la tormenta invernal y necesita ayuda?

Local aid (ayuda local) try 211, 311, 800.733.2767

Call/text (llame) Disability & Disaster Hotline 800-626-4959 or hotline@disasterstrategies.org

Disabled, impacted by the winter storm and need help? Discapacitade, impactade por la tormenta invernal y necesita ayuda?

Local aid (ayuda local) try 211, 311, 800.733.2767

Call/text (llame) Disability & Disaster Hotline 800-626-4959 or hotline@disasterstrategies.org


ID: (Español abajo) A background graphic shows a snowy day and a bundled-up man seated in a wheelchair. A man is standing next to him putting a large blanket around him. The text over a phone graphic says: “Disabled, impacted by severe winter weather, and need help? Call/text the Disability and Disaster Hotline. 800-626-4959 or hotline@disasterstrategies.org. ” At the bottom right corner is the logo for The Partnership for Inclusive Disaster Strategies, with a sun and 4 graphics inside the sun: a hurricane, a lightning storm cloud, a house with a split down the center, and a tornado depicted on a smartphone screen.

Descripción de imagen: Un gráfico de fondo muestra un día de nieve y un hombre abrigado sentado en una silla de ruedas. Un hombre está de pie junto a él y lo envuelve con una manta grande. El texto sobre un gráfico de teléfono dice: “¿Discapacitade, afectade por el clima invernal extremo y necesita ayuda? Llame/text a la línea directa de discapacidad y desastres. 800-626-4959 o hotline@disasterstrategies.org. ” En la esquina inferior derecha está el logotipo de The Partnership for Inclusive Disaster Strategies, con un sol y 4 gráficos dentro del sol: un huracán, una nube de tormenta eléctrica, una casa con una división en el centro y un tornado representado en la pantalla de un teléfono inteligente.

01/23/2026

TELEHEALTH UPDATE: The House passed the Department of Health and Human Services’ funding bill yesterday, including the telehealth extensions. Under the proposal, Medicare telehealth flexibilities would be extended by two years, until Dec. 31, 2027. Unfortunately, they are not permanent so there is still work to be done in the future.

The bill is now headed to the Senate for a vote before the Jan. 30th deadline.

A huge thank you to everyone who called their members of Congress to urge them to support telehealth extensions for Medicare. You can still call your Senator and ask them to support the telehealth extensions. Find your member here: https://www.congress.gov/members/find-your-member

Being able to access telehealth for people with ME/CFS and Long COVID is crucial, as a few members of our community can attest to:

"Without telehealth I would not be able to get any healthcare at all. I have severe ME and am mostly bedridden. With telehealth, I can regularly check in with both my ME specialist and my P*P, so they can adequately monitor my health and prescribe any needed meds. My P*P is able to treat my diabetes this way! Controlling my diabetes is literally saving my life, and without telehealth this would not be possible!"
Kris Biffle Rudin

"The ability to have telehealth available through Medicare is especially important to me. For those of us with chronic illness and aging issues as well, it is extremely challenging to have enough energy to travel to doctor's appointments. Physicians are limited in my region and it takes me a half an hour to travel to my internist. This may not seem like a long distance, but for those of us with M.E., it is!"
Cindy

Thank you to our community members who shared their stories with us!

01/23/2026

Thank you so much to each person who donated our Be A Lantern campaign! The final rewards are in the works and today we are honored to share a new video and the lanterns with you!

A special thank you to those who donated to dedicate a lantern in honor or memory of someone. You can see all the lanterns here: https://www.meaction.net/lantern-in-the-darkness

We also created a video as with all those you chose to honor or memorialize this way. You can find that here: https://youtu.be/SGZq9DpCsbE?si=JKhUZcPQqMvbTInL

Every member of our community is valued. Thank you for all you did to help our fundraising campaign meet its goal - to allow us to be here this year working hard for our community.

We are sending out emails with our giveaway winners. It is taking us a little time so we appreciate your patience but we are excited to be able to send out even more refurbished Visible bands than we originally announced.

We also have two events coming up as rewards from the campaign. Join our Keep The Light gathering on February 1 at 3 pm ET and stay tuned for another great event with author Marisa Renee Lee.

01/22/2026

I don’t need to tell you that these are extraordinarily difficult times. Across the country, we’re witnessing devastating cuts, acts of injustice, and widespread attacks on human rights. It’s overwhelming, it’s frightening. In moments like this, our purpose becomes even more clear. We are here to protect and uplift our community, especially those most vulnerable.

When care is threatened, community is our strength.

MEAction executive director, Laurie Jones, shares an important message for our community. Thank you to the members of our community who shared their concerns and allowed us to share their quotes with you. Please see full message at the link in our comments.

Every fight for dignity, safety, and healthcare access is connected —and so are we.

ME Action will continue advocating fiercely for our community's healthcare needs, while standing in solidarity with all those fighting for human rights and justice.

We can do this—together, with resolve and compassion. Let's keep showing up for one another, protecting our right to care, and ensuring that no one in our community is left behind. We are here for you.