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meactnet.bsky.social
#MEAction Network
@meactnet.bsky.social
5.7K followers 420 following 1.2K 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
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
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.
February 13, 2026 at 5:01 PM
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
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...
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...
www.pbs.org
February 10, 2026 at 8:54 PM
meactnet.bsky.social
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
February 10, 2026 at 5:01 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
Reposted by #MEAction Network
physiosforme.bsky.social
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
02 Chamber survey | Physiosforme
www.physiosforme.com
February 5, 2026 at 6:39 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
Check out this helpful resource from our friends at @batemanhornecenter.bsky.social!

#pwME #disability #UnitedForME
batemanhornecenter.bsky.social Bateman Horne Center @batemanhornecenter.bsky.social · 9d
We’re releasing a new State-by-State Resource Directory to help people living with ME/CFS and other disabling chronic illnesses find local and national support.

Free, practical, and built for real life.
🔗https://bit.ly/3ZBBIAC
February 5, 2026 at 7:01 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
Reposted by #MEAction Network
dredf.bsky.social
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
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.
January 29, 2026 at 1:30 AM
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
Reposted by #MEAction Network
longcovidjustice.org
Action alert - We're co-sponsoring @meactnet.bsky.social's ICE Makes Me Sick campaign.

Use this easy tool to send a quick message to your House reps: makesmesick.org?source=direc...

Tell reps to stop bankrolling ICE violence while slashing our healthcare & homecare. Fund healthcare, not violence!
February 2, 2026 at 7:44 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
Join us for our monthly Partner Caregiver support group meeting this Sunday (Feb. 1 at 3 pm ET), where we will discuss “Reconnecting with the Relationship Beneath Caregiving.”

All caregivers are welcome.

www.meaction.net/event-detail...

#pwME #Caregiver #FamilyCaregiver #LongCovid #MECFS
#MEAction Partner Caregiver Support Call | #MEAction
The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, a...
www.meaction.net
January 28, 2026 at 10:24 PM
Reposted by #MEAction Network
openmedf.bsky.social
🩺 Share OMF’s VuMedi channel with your healthcare professional: https://ow.ly/CFVu50Y4lpZ

OMF’s expert-led channel features research-informed videos on #MECFS, #LongCOVID & related conditions to support evidence-informed care. Access limited to licensed healthcare providers.
A healthcare professional wearing a white coat holds a stethoscope. On the left side of the image are the VuMedi logo and the OMF logo, representing collaboration.
January 27, 2026 at 3:32 PM
meactnet.bsky.social
If you are disabled and need help due to this winter storm, see info from @disasterstrat.bsky.social below!

#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #spoonie #disability
disasterstrat.bsky.social The Partnership for Inclusive Disaster Strategies @disasterstrat.bsky.social · 18d
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
#WinterStorm
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. #DisabLedResponse” 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. #DisabLedResponse” 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.
January 26, 2026 at 6:14 PM
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 · 21d
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 | hotline@disasterstrategies.org
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