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meactnet.bsky.social
#MEAction Network
@meactnet.bsky.social
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A global network of people empowering one another to fight for equity for myalgic encephalomyelitis. Home of the #MillionsMissing linktr.ee/meactnet

#pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice
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meactnet.bsky.social
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
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.
February 12, 2026 at 8:30 PM
meactnet.bsky.social
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.
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!
February 11, 2026 at 6:46 PM
meactnet.bsky.social
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
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.
February 9, 2026 at 9:15 PM
meactnet.bsky.social
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...
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!
February 6, 2026 at 5:34 PM
meactnet.bsky.social
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
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
February 5, 2026 at 8:40 PM
meactnet.bsky.social
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
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.
February 4, 2026 at 6:19 PM
meactnet.bsky.social
We are thrilled to announce a virtual book reading featuring @shalidaask.bsky.social, #MEAction’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: www.meaction.net/event-detail...

#Disability
Black and white photo of Shalida Askanazi (Black woman with long curly hair wearing a black top with a small smile) and her book cover a muted background of bookshelves. Her book cover is in color and show a city in the background with a wheelchair in the foreground and the title "That Girl's in a Wheelchair." #MEAction logo in top corner. Text in light purple: Book reading with Shalida Askanazi Join us virtual reading February 20 3 pm ET.
February 3, 2026 at 6:26 PM
meactnet.bsky.social
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.

actionnetwork.org/letters/ice-...

@longcovidjustice.org
Bright orange and yellow text-based graphic with a megaphone in bottom corner. And outline of Congress building in corner. Text: Important update Contact you members of Congress now! The House of Representatives will be voting on the budget soon. Use our tools to contact Congress to demand they stop bankrolling ICE violence while slashing our healthcare and home care.
February 2, 2026 at 7:39 PM
meactnet.bsky.social
What a lovely community gathering we just had! For all who were unable to attend, we wanted to offer an online participation option!

We went through community-sourced questions & ended with these options:

1 What is giving you hope now?

OR

2 What is you favorite way to eat potatoes?
Two questions in speech bubbles with a small photo to go with the question. Text: #MEAction Community Question Time! 1st speech bubble has phot of a stone with the word hope on it. Text: What gives you hope? 2nd speech bubble with photo of unpeeled potatoes. Text: OR what is your favorite way to eat potatoes? Text at bottom: For all who were unable to attend our virtual community gathering today - let’s create some community time here!
February 1, 2026 at 9:41 PM
meactnet.bsky.social
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

#pwME #PwLC #MECFS #Spoonie
A cozy spot with a blanket, mug, and open book. Text overlaid: Reminder. Join us or our Keep the Light Community event: TODAY - Sunday, February 1st at 3 pm ET
February 1, 2026 at 6:15 PM
meactnet.bsky.social
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/ 8 pm GMT for a virtual community event. We aim to keep it a gentle time together in community.

Register: https://ow.ly/WJq450Y6tiv

#pwME #pwLC
Cup of coffee with a heart shape in foam on cream background with greenery accents. Text in center: "Virtual community event Feb. 1st 3 pm ET Do you have a favorite get to know you question, especially good for groups? " #MEaction logo above text.
January 30, 2026 at 6:08 PM
meactnet.bsky.social
Craving some gentle time together in community? Us, too!

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

#pwME #PwLC #MECFS #Spoonie
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!
January 30, 2026 at 1:00 AM
meactnet.bsky.social
Like you, we have been watching horrors unfold especially in Minnesota. We have been checking on our #MEAction Minnesota community and sending all our love and support. This situation is heartbreaking and sickening.

Take action: makesmesick.org

#pwME #Disability #DisabilityJustice #pwLC
Black square with white text. "ICE makes me sick. Fund healthcare not violence. makesmesick.org"
January 29, 2026 at 5:25 PM
meactnet.bsky.social
"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." Cindy

Thanks to our community members for sharing!
Quote on black background. Text: 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
January 23, 2026 at 8:11 PM
meactnet.bsky.social
Being able to access telehealth for people with ME/CFS and Long COVID is crucial.

"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 PCP..."
Kris Biffle Rudin
Quote on a red background. Text: 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 PCP, so they can adequately monitor my health and prescribe any needed meds. My PCP 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
January 23, 2026 at 8:11 PM
meactnet.bsky.social
TELEHEALTH UPDATE: The House passed the Department of Health and Human Services’ funding bill yesterday, including telehealth extensions.
Under the proposal, Medicare telehealth flexibilities would be extended by 2 years, until Dec. 31, 2027. They are not permanent so there is still work to be done.
Photo of computer with a telehealth graphic on the screen in center of graphic. Text above: Breaking News. The House passed Medicare telehealth flexibilities extension- on to the Senate! Text underneath: Medicare telehealth flexibilities would be extended by two years, until Dec. 31, 2027. The bill is now headed to the Senate for a vote before the Jan. 30th deadline
January 23, 2026 at 8:11 PM
meactnet.bsky.social
Thank you to all who donated to our Be A Lantern campaign! The final rewards are in the works & we are honored to share a new video & final lantern page!

Lanterns: https://ow.ly/Aili50Y1tOr

Video: https://ow.ly/ZjKw50Y1tOt

Every member of our community is valued. Thank you all!
Rows of lanterns in the background that have a brass plaque with a name. Text overlaid: We can be a lantern in the darkness together. A special thank you to those who donated to dedicate a lantern in honor or memory of someone.
January 23, 2026 at 5:01 PM
meactnet.bsky.social
We don’t need to tell you that these are extraordinarily difficult times.

When care is threatened, community is our strength.

MEAction executive director, Laurie Jones, shares an important message for our community: https://ow.ly/PcZX50Y1k46

#pwME #PwLC #community
Four people holding candles in a nighttime vigil symbolizing unity and care in the community. Text overlaid: When care is threatened, community is our strength. More detailed photo description: Each person is sitting closely to one another holding a candle. They are diverse in age, race, and gender.
January 22, 2026 at 5:39 PM
meactnet.bsky.social
Happy birthday to all who are celebrating in January! Taking a moment to send love and hope your way!

An extra thank you to all who set up birthday fundraisers for us on Meta or our site! You can set up a fundraiser on Facebook, Instagram, or our own site!
Blue balloons surround text on blue background. Text: Happy birthday! We wish a very happy birthday to all who are celebrating in January! Sending a great big thank you to all who have created birthday fundraisers for ME Action!
January 20, 2026 at 9:09 PM
meactnet.bsky.social
New Medicaid work rules will take effect at the end of 2026. Before states start enforcing these new work rules, the HHS Secretary must issue guidance.

Sign our letter today to help protect people with ME & Long COVID from losing their Medicaid. ow.ly/Cy8A50XWVug
Largely text-based graphic with one photo showing a card with the words "Medicaid Insurance." Text above: Protect Medicaid Access for people with ME/CFS and Long COVID. Text below: New Medicaid work rules will take effect at the end of 2026. Please sign our letter to the HHS Secretary urging hm to take action that will protect people with ME and Long COVID.
January 15, 2026 at 3:25 PM
meactnet.bsky.social
A great meeting of the minds today! It's beautiful & hopeful to share all of the hard work & visions our ME orgs have for this next year.

And it's all motivated with love & desire to support this wonderful community.

@batemanhornecenter.bsky.social @openmedf.bsky.social @solveme.bsky.social
screenshot from a Zoom call that shows 5 people and one blank screen with a name. Everyone is smiling at the camera. From left to right: Tahlia Ruschioni, Laurie Jones, Linda Tannenbaum, Patrick Buchanan (no photo), Monique Wike, and Emily Taylor.
January 14, 2026 at 8:26 PM
meactnet.bsky.social
Save the date! Our Keep the Light Virtual Community Gathering will be February 1st at 3 pm ET/ 8 pm GMT and you are invited! Register here: https://ow.ly/nO9Q50XWrYt

It will be time to come together as a community and help us remember that we are a light in this world together!
Simple graphic with cream background. Calendar image showing Feb. 1 at top. Text underneath: #MEAction Keep the Light Virtual Community Gathering 12 pm PT, 2 pm CT, 3 pm ET Sunday February 1
January 14, 2026 at 5:01 PM
meactnet.bsky.social
You all continue to be a Lantern in the Darkness! This is a dark time, but we can all be the light for each other. With your support, we have exceeded our $150,000 end-of-year goal and – with the support of a generous matching grant – have raised $176,060.

THANK YOU!
Background of fireworks including heart shaped ones. Text overlaid: We did it! We surpassed our end-of-year fundraising goal thanks to YOU!
January 13, 2026 at 6:31 PM
meactnet.bsky.social
Positive news regarding the ACA!

The House of Representatives passed bipartisan legislation to extend ACA subsidies. Ask your senator to support a clean, multi-year extension of the tax credits. Sample wording in graphic. https://www.congress.gov/members/find-your-member

#ACA #PwME #Disability
Graphic with a call script for senator supporting extending ACA subsidies. Photo of a Black woman holding a cell phone to her ear. Text: Hello, my name is [Your Name], and I'm a constituent from (City/Zip Code). I'm calling to urge Senator (Name] to support a clean, multi-year extension of the Affordable Care Act tax credits. These credits are essential for millions of families who rely on them to afford health insurance coverage. (Feel free to add how it affects you.) Thank you.
January 12, 2026 at 5:00 PM
meactnet.bsky.social
Reminder: We have a Protest Guide for those with ME or other energy-limiting chronic disease. The 1st half focuses on creating a more accessible protest & the 2nd half focuses on attending an in-person protest safely. https://ow.ly/K0Oo50XUg9L

#pwME #Disability #protest
MEAction protest guide available in white letters with red background above a photo of protestors lying on the ground outside of the White House holding signs.
January 10, 2026 at 3:00 PM