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.

We have a new video ready to watch! Check out our interview with Marisa Renee Lee about her book, Grief is Love. https:/...
12/17/2025

We have a new video ready to watch! Check out our interview with Marisa Renee Lee about her book, Grief is Love. https://youtu.be/ax36XTkb1uA

Board Member, Elizabeth Weaver, interviews author Marisa Renee Lee. Marisa discusses how to live with grief and living with loss, by making space for it, beyond just getting over it.

Marissa does a book reading and then the discussion is opened up to questions from Elizabeth and members of the community.

PSSST.... is currently offering a free book giveaway until December 31. You can enter to win a copy of Grief is Love in audio or ebook format if you live in the US, Canada, or UK: https://forms.gle/xwAZNAcK1J2dqud66

Excited to see the rewards?? Us, too! Please keep sharing to help us reach our goal in our end-of-year giving campaign!

Alice Wong embodied the fight for independent living, support and empowerment for disabled people. As   embarks on a fig...
12/16/2025

Alice Wong embodied the fight for independent living, support and empowerment for disabled people. As embarks on a fight to protect Medicaid for our community, we carry the legacy of Wong with us. Read a tribute to Wong here:
https://www.thenation.com/article/society/tribute-oracle-alice-wong/

"While the administration flirts with the idea of a return to institutions, we need non-disabled people and allies to speak out to say that the cuts to Medicaid are not acceptable,” writes Rebecca Cokley in a tribute to Wong. Cokley met Wong in 2010 while overseeing diversity and inclusion efforts for the Obama administration.

“It was part of Alice’s ability to look to the future and a world where laws and attitudes did not keep disabled people poor, pitied, and isolated,” wrote Cokley.

“Alice’s input on federal policy included everything from the need to strengthen existing policies like the Americans with Disabilities Act and the right to access home and community-based services, to accessible currency and the right to higher education.



Image description: Getty Images photo showing Alice Wong (Asian-American with hair pulled back wearing a green jacket and non-invasive ventilator) looking at Judy Heumann (only pictured from behind showing a person wearing a head scarf and sitting forward in a wheelchair). Text overlaid: A Tribute to an Oracle, Alice Wong The Nation. By Rebecca Cokley. Text below: Alice Wong embodied the fight for independent living and supports for disabled people.
is so grateful for Wong’s work and legacy, and we loved reading this tribute by Rebecca Cokley.

12/16/2025

Our Advocacy Director, Ben HsuBorger, shares why the campaign is so important - even if you’re not on Medicaid. freakinfrail.org

As the New Year rolls in, has a plan to start fighting back against the system rigged against our healthcare.

We have a plan for 2026 to make sure everyone with ME/CFS and Long COVID on Medicaid keeps their healthcare - and we need your solidarity to make this happen.

We’ve launched our year-long Freakin’ Frail campaign to protect Medicaid! Our letter to HHS Secretary is step one. The next step of the fight is going to happen at the state level – and we will begin organizing grassroots teams to fight for recognition for ME/CFS and Long COVID across the country.

We need you with us — your spoons, your stories and your financial support to sustain this work all year. If you can, please start a monthly gift at meaction.net/donate — and sign our letter to the HHS Secretary.

Thank you for having our community’s back.



Video description: Ben HsuBorger (white man with long beard and dark hair wearing glasses and a button-down shirt) sits in front of a wall with large orange circle and speaks directly to the camera.

New video available now!  ’s Shalida Dobbins interviews author Brian Buckbee about his book, We Should All Be Birds. htt...
12/16/2025

New video available now! ’s Shalida Dobbins interviews author Brian Buckbee about his book, We Should All Be Birds. https://ow.ly/rF0750XK2Jr

The discussion ranges from what is the process for writing a book with ME, what is it like to share your story with the world, and Brian is joined by his co-author Carol Ann Fitzgerald. The discussion was then open to members of the community to ask questions.

***Reminder: as a reward level for our end-of-year campaign, we are giving away 10 copies of this book now! Audio or ebook and must be in US, Canada, or UK. Fill in form by Dec. 31st: https://ow.ly/WjeC50XK2Jq

 's Scientific Director, Jaime Seltzer, is giving a talk on December 17th at 12 pm ET on: Improving Quality of Life in M...
12/15/2025

's Scientific Director, Jaime Seltzer, is giving a talk on December 17th at 12 pm ET on: Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions. Register here: https://us06web.zoom.us/meeting/register/4j7IeX26TTi_Qb4oWg-_BA

The talk is available on a donate as you're able. And 20% of the donation will be going to . Help spread the word!

Jaime Seltzer is a fount of knowledge and she so generously educates our community and the wider world. Let's help spread the word of this unique opportunity!

Share your shop! All community members are welcome to share a link or tag their shops in the comments below.  We have so...
12/14/2025

Share your shop! All community members are welcome to share a link or tag their shops in the comments below.

We have so many creative folks in our community and so many who are doing what they can to make ends meet. So whatever you are selling, please feel free to share it.

Please mention what country you are in especially if you do not ship out of country. If you have a gift card option, that would be great to mention.

I am so sorry for the later date of this post but it has been a rough few months and time just got away from me but I wanted to offer the opportunity just in case!

But we are creative! Print out a picture of what your ordered to give or add some items to your wish list and explain you are just as thrilled if it arrives a bit later.

Whatever holiday you are celebrating this time of year, you are welcome to join in and do a little gift shopping or selling!

We have some treats for you this weekend! As you know we are fighting hard every day for health equity for people with M...
12/13/2025

We have some treats for you this weekend!

As you know we are fighting hard every day for health equity for people with ME and Long COVID. We are fighting for you. As a community, you are helping with our end-of-year fundraising and because of your gracious gifts- we’ve unlocked some perks for the whole community!

Our first two levels have been unlocked and that means book giveaways from two amazing authors and a new meditation from Stuart Murdoch of Belle and Sebastian are now available!

We have 10 copies each of We Should All Be Birds by Brian Buckbee and Grief is Love by Marisa Renee Lee available to residents in the US, Canada, and the UK! These books will come in either audio or e-book formats.

Everyone who fills out the entry form, will be entered into a drawing to select winners. We will be collecting entries until 12/31/2025 - enter today: https://docs.google.com/forms/d/e/1FAIpQLSeGqE6vwjf-8zRtbhxGDyfjx9Mo7TxmtLbkkhGXHgXjUw56jw/viewform

Stuart Murdoch, front man of Belle and Sebastian, invites you to join him in this 16 minute guided meditation. is deeply grateful to Stuart for sharing his time and talents to uplift the ME community. Please adapt the practice in whatever way feels right for you. https://www.meaction.net/post/guided-meditation-for-me-community

As we shared on Friday, fundraising has been hard this year, but we continue to inch our way to our fundraising goals. With each donation made, we are getting closer and closer to unlocking new levels. Also, don’t forget if you are able to give $50 or more, you can get a lantern featured on our website with a name of your choosing.

Please give today to help reach the next levels! meaction.net/donate
Psst... the next level is: $35k – 50 Visible Wearable Devices from Visible + 3 months membership. We will host a drawing to select winners (available for US, Canada, and UK).

You are the light that guides us! With you at the center of everything we do, hopes to remain a lantern in the darkness.

We are facing an unprecedented crisis for disability and chronic illness communities. People are at the precipice of los...
12/12/2025

We are facing an unprecedented crisis for disability and chronic illness communities. People are at the precipice of losing their access to healthcare, home and community-based services, and the promise of new research. is in the right rooms to fight for us. Next year, we are launching a full-scale fight against inequality to make sure we protect our community.

Unfortunately, we do NOT have the funds to fully support our mission- and that is the hard truth. Most years, we are already halfway to our fundraising goal- and this year has been scarily slow. We get it- it’s a hard financial time. But if you can give, we need you. That’s not hyperbole. It’s the truth.

We are so lucky to be partially funded by the Ford Foundation and the Grassroots Network, but the large portion of our funding comes from the community we fight for. We don’t want to ask- we simply have to.

If you have been waiting to give, now is the time. The funds we raise now until the end-of-the year help us to plan for the new year. We still have a matching grant in place so your gift is doubled.

https://www.meaction.net/lantern-in-the-darkness

"  brought light to my life through community, art, and connection. There were years I thought I would never be able to ...
12/12/2025

" brought light to my life through community, art, and connection. There were years I thought I would never be able to draw again. literally gave me a purpose to work on drawing and design.

In May I was able to participate in in Washington DC, both in person and with my artwork. My painting was used in posters and posts for the event, which filled me with immeasurable gratitude and joy! This event and this piece were highlights of a very dark year. In September I helped create custom designs for clothing and merchandise, which I now wear proudly (especially during PEM flares!). I’m delighted to think of other people with ME wearing my messages of power and inspiration.

gave me encouragement to continue to create and to continue to participate in a vibrant community that also understood and respected my limitations. In my darkest, most immobile times, I remember these triumphs and know I will be able to create again, as long as I rest, tend to my needs, and listen to my body. was truly a beacon in my long dark journey of isolation, leading me to connection and community through art."

Jess Kaushansky @ JessNeedstoRest.

We are so honored and humbled to share what means to Jess and we hope that you will let Jess know how much we appreciate her volunteer efforts with us! We also hope you sincerely take a minute to think about what MEAction means to you and how you can help make sure we are there for this community next week, next, month, and next year.

Jess shared her amazing artwork to share with you here!

Image description: artwork that shows a young woman with pink hair lying in bed holding a heart-shaped pillow. Text on the blanket:" You are not alone" Signed Jessica Kaushansky

We know it is hard to hear the awful news that Congress failed to protect ACA subsidies, and so many will likely lose th...
12/11/2025

We know it is hard to hear the awful news that Congress failed to protect ACA subsidies, and so many will likely lose their healthcare.
We are here! We are working! But here is your gentle reminder to take care of you!

If you want to take action today, remember we working to protect Medicaid for our community - sign our letter to HHS Secretary: freakinfrail.org

This week, HHS Secretary Kennedy praised new Medicaid work rules for promoting the value of work that "helps American ci...
12/11/2025

This week, HHS Secretary Kennedy praised new Medicaid work rules for promoting the value of work that "helps American citizens live healthy and fulfilling lives."

For those of us with ME/CFS, Long COVID, and other invisible disabilities, more hoops to keep care means crashes, lost coverage, and rules rigged to fail us.

Buried in the federal guidance is one critical line: work rules don’t apply to people who are “medically frail or otherwise [have] special medical needs (as defined by the Secretary).”

Join our campaign and demand Secretary Kennedy use his power to protect people with ME/CFS and Long COVID from being pushed off Medicaid because we are too sick to work.

Tell him we won't accept rules rigged to fail us — add your name: https://actionnetwork.org/petitions/freakin-frail

Join us this Friday for some pre-holiday, restorative self-care crafted specifically for people with ME!Join   for an EX...
12/10/2025

Join us this Friday for some pre-holiday, restorative self-care crafted specifically for people with ME!

Join for an EXTREMELY modified movement class on December 12th at 11 am PT/2 pm ET/7 pm GMT.

Register: https://ow.ly/FvGX50XCebf

We are excited to partner with Shannon Williams-Bramburger of Nourish Therapeutic Yoga. These classes we have offered in the past have been a big hit! It will be a virtual 30 minute class that can be done entirely from bed. We will follow that up with a community chat.

brings this to you free of charge as our gift to you. We look forward to a cozy, supportive way to gather!

Feel free to attend and just watch to see if it is right for you. You are welcome to join the community chat afterwards.

*We recognize that seeing the word yoga in relation to ME can stir some strong feelings. This is why we took a lot into consideration before offering this type of class to our community. The fact that Shannon herself is a person with ME and has been receptive to all our concerns, made us feel comfortable offering this class. Throughout the class you are very much encouraged to not do anything that might cause you PEM.

We also recognize even this might be out of reach for the most severely ill but we constantly strive to find ways to provide options to include all members of our community. You might want to check out the meditation specifically for those with severe ME created for by Shannon. See the full playlist on MEAction's Y O U T U B E channel.

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

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