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meactnet.bsky.social
#MEAction Network
@meactnet.bsky.social
5.7K followers 410 following 1.1K posts
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
#MEAction Network @meactnet.bsky.social · Dec 8
New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care.
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.

SIGN THE LETTER: actionnetwork.org/petitions/fr...
Beige background with the words "Freakin' Frail" in black and red. At the bottom, reads the sentence: "Protect Medicaid Access for People with ME/CFS and Long COVID."
meactnet.bsky.social
Please see the helpful disability specific checklists for winter storms from our friends at @disasterstrat.bsky.social!

We hope you stay safe during the winter storm moving through so much of the US!

#pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #disability
disasterstrat.bsky.social The Partnership for Inclusive Disaster Strategies @disasterstrat.bsky.social · 2d
Winter storms are coming. Snow, ice & freezing temps create extra risks for disabled people: power outages, inaccessible travel, disrupted care.

Here is a checklist to help you plan ahead:

Disability & Disaster Hotline: 800.626.4959 | [email protected]
Infographic titled “Winter Storms: Things Disabled People Should Do Ahead of Time.” The infographic is organized into sections including: Gather Supplies; Power and Light; Food and Water That Works for You; Warmth and Layering; Communication Supports; Service Animal and Pet Supplies; Planning Ahead for Power Outages; Transportation and Accessible Evacuation Planning; Making Your Home Safer; Support Needs and Communication; Thinking About Common Gaps; and Preparing a Go Bag. It also includes space for personal notes and disability disaster hotline information. Infographic titled “Winter Storms: Things Disabled People Should Do Ahead of Time.” The infographic is organized into sections including: Gather Supplies; Power and Light; Food and Water That Works for You; Warmth and Layering; Communication Supports; Service Animal and Pet Supplies; Planning Ahead for Power Outages; Transportation and Accessible Evacuation Planning; Making Your Home Safer; Support Needs and Communication; Thinking About Common Gaps; and Preparing a Go Bag. It also includes space for personal notes and disability disaster hotline information. Infographic titled “Winter Storms: Things Disabled People Should Do Ahead of Time.” The infographic is organized into sections including: Gather Supplies; Power and Light; Food and Water That Works for You; Warmth and Layering; Communication Supports; Service Animal and Pet Supplies; Planning Ahead for Power Outages; Transportation and Accessible Evacuation Planning; Making Your Home Safer; Support Needs and Communication; Thinking About Common Gaps; and Preparing a Go Bag. It also includes space for personal notes and disability disaster hotline information.
January 24, 2026 at 12:13 AM
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
Reposted by #MEAction Network
madelinenerd.bsky.social
YouTube #livestream recording of my #petition presentation to my MLA/BC premier @DavidEby office today, January 21st www.youtube.com/live/PN6-ewF...
#MyalgicEncephalomyelitis #healthcare #canpoli #disability #MyalgicE #pwME #MECFS #longviral #MEAction #Canada #Vancouver #bcpoli
January 22, 2026 at 1:28 AM
Reposted by #MEAction Network
disasterstrat.bsky.social
Winter emergencies hit disabled people hardest. Let’s prepare together and keep our communities safe.

Warming centers: 211 | Disability & Disaster Hotline: 800-626-4959
Slide 1 shows a blue winter-themed background with falling snowflakes. Centered is a large white rectangle with bold black text that reads, “Winter Tips for Disabled People.” Slide 2: “Dangers of winter storms for disabled people.” Below the heading is a bulleted list that reads: “Power outages + cold temps → loss of heat/equipment, increased health risks.” “Batteries draining faster (wheelchairs, AAC, hearing aids, ventilators).” “Medication instability (some meds can’t freeze or need refrigeration).” “Blocked access → snow/ice on ramps, sidewalks, curb cuts, transit delays.” “Direct service disruptions when PCAs/home health can’t travel safely.” Slide 3: “To stay prepared this winter.” The bullet points read: “Fully charge mobility + assistive devices; keep batteries out of the cold.” “Plan for heat loss: blankets, layers, safe warming options.” “Protect medications from freezing or overheating.” “Arrange snow removal for ramps, doors, and accessible paths.” “Confirm paratransit availability + set personal attendants backup plans.” “Take advantage of public libraries as warming centers during their normal hours.” Slide 4: “Winter 2025 is already bringing Arctic cold, early snow, and dangerous storms across the country.” Below that, a second paragraph reads, “This season, let’s strengthen our support networks, check on one another, and make inclusive disability preparedness a priority.”
December 16, 2025 at 8:53 PM
Reposted by #MEAction Network
disasterstrat.bsky.social
Disabled, impacted by disasters, need help? Discapacitade, afectade por desastres y necesita ayuda?
Try | Trate 211, 311, 800.733.2767

Call/text (llame) Disability & Disaster Hotline 800-626-4959 or [email protected].
Bilingual graphic with a cloudy background promoting the Disability & Disaster Hotline. Text in English and Spanish asks if disabled people impacted by disasters need help and provides the call/text number for the hotline: 800-626-4959. The Partnership's logo appears at the top, with disaster icons along the bottom.
January 7, 2026 at 7:23 PM
Reposted by #MEAction Network
disasterstrat.bsky.social
The REAADI for Disasters Act is back in Congress! It strengthens disability civil rights in disasters and adds new funding for community-based response and disability-inclusive preparedness. Ask your Congressperson to co-sponsor REAADI today! #REAADI #DisabilityJustice
Slide 1: A red bordered graphic with a photo of the U.S. Capitol building in the background. Large white text reads “REAADI for Disasters Act.” REAADI logo appears on the right. Centered text reads “The Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act was reintroduced! Introduced in the Senate by Senators Richard Blumenthal (D-CT), Bernie Sanders (I-VT), and Kirsten Gillibrand (D-NY), Amy Klobuchar (D-MN), Peter Welch (D-VT), Ed Markey (D-MA), Tammy Duckworth (D-IL), Ron Wyden (D-OR), Elizabeth Warren (D-MA), John Fetterman (D-PA), and in the House by Representatives Debbie Dingell (D-MI), Brian Fitzpatrick (R-PA), Jimmy Panetta (D-CA), and Jared Huffman(D-CA).
January 14, 2026 at 4:31 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
Reposted by #MEAction Network
madelinenerd.bsky.social
Virtual petition presentation i
to my MLA, premier David Eby's office PST 11-11:30am YouTube live youtube.com/@iammadeline...
Petition open til 9am Wed bit.ly/Marcia_petit...
#myalgicE #disability #longcovid #myalgicencephalomyelitis #Canada #mecfs #canpoli
January 20, 2026 at 1:20 AM
Reposted by #MEAction Network
solveme.bsky.social
We met up with our friends at
@meactnet.bsky.social ,
@openmedf.bsky.social y.social
and @batemanhornecenter.bsky.social
this week to share ideas.
We're so grateful for our partners!
#UnitedForME
Screengrab of meeting with CEOs and staff from Solve M.E., Bateman-Horn Center, #MEAction, and Open Medicine Foundation.
January 15, 2026 at 8:59 PM
Reposted by #MEAction Network
batemanhornecenter.bsky.social
Today, the CEOs of @solveme.bsky.social, @meactnet.bsky.social, @openmedf.bsky.social, and @batemanhornecenter.bsky.social met to align, collaborate, and strengthen how we support one another’s work.

Progress isn’t always visible, but it is happening. And we’re doing it together.

#UnitedForME
Six individuals in a virtual meeting. Text reads: "Strong leadership creates strong results." Logos of Bateman Horne Center, OMF, Solve M.E., and #MEAction displayed below.
January 14, 2026 at 10:42 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
meactnet.bsky.social
Take action today! Please sign our letter to the HHS Secretary urging him to recognize people with ME/CFS and Long COVID as “medically frail” so that their access to Medicaid is protected. freakinfrail.org

This petition is the 1st step.

#Medicaid #PwME #MECFS #LongCovid
Graphic with black background urging you to take action for the Freakin' Frail campaign. Text in center points you to www.freakinfrail.org. Text at bottom:" Sign today to help Protect Medicaid access for people with ME/CFS and Long COVID. This petition is the first step in #MEAction's Freakin' Frail campaign to protect our community’s access to Medicaid."
January 8, 2026 at 6:41 PM
meactnet.bsky.social
Laila Solaris shares the beginning of her essay "The Color Orange" with us.

The full essay can be found in Near-Life Experiences The Pillow Writers Anthology Issue 2. Learn more about the truly amazing @pillowwriters.bsky.social & how to get your copy here: ow.ly/6Grc50XT8VK

#pwME #spoonie
January 7, 2026 at 9:13 PM
meactnet.bsky.social
We have been asked to share the fundraiser for this community member! @rarediseasepatient.bsky.social is facing being unhoused as of January 9th. They are asking for donations in honor of their 55th birthday.

Please share: gofund.me/80af6f2c9

#pwME #RareDisease #MECFS #Spoonie
January 7, 2026 at 6:13 PM
meactnet.bsky.social
Does anyone try to choose a word of the year?

I do not. I am not good at “give a one word answer” type actions. I am more… how about a nice paragraph…perhaps a short essay type person.

However, today as I was pondering this question one word did come to me- care.

#pwME #NewYear #care
All text image against cream background. Text: " 2026 Word of the Year Care Noun: “the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something” and “serious attention or consideration applied to doing something correctly or to avoid damage or risk.” Verb: “feel concern or interest; attach importance to something” and “look after and provide for the needs of.”
January 6, 2026 at 8:48 PM
Reposted by #MEAction Network
wilhelminaj.bsky.social
The coming year will be a real challenge as we find out how our government agencies have been restructured, whom we are able to speak with, and how to take action that actually moves the needle toward understanding and treating ME/CFS. Working together, we are up to the challenge! Let’s go, 2026!
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · 23d
How has your new year begun? Starting today with a cuddly blanket and warm cuppa that has a reminder that at #MEAction we take bold action. This coming year is certainly going to require a lot from us. Remember to rest up and pace! It is amazing what we can accomplish together from our beds!
#pwME
White coffee mug with red text saying 'I like my action like I like my coffee BOLD' on a soft gray textured blanket.
January 2, 2026 at 8:09 PM
meactnet.bsky.social
How has your new year begun? Starting today with a cuddly blanket and warm cuppa that has a reminder that at #MEAction we take bold action. This coming year is certainly going to require a lot from us. Remember to rest up and pace! It is amazing what we can accomplish together from our beds!
#pwME
White coffee mug with red text saying 'I like my action like I like my coffee BOLD' on a soft gray textured blanket.
January 2, 2026 at 7:50 PM