#MEAction Network

@meactnet.bsky.social

5858 Followers 511 Following

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

MEAction updates highlight progress on ME/CFS Research Roadmap funding and collaboration with the Surgeon General's Office and work to be done on Medicaid. Graphic with three red bubbles with text in each. Text at top: A week of wins and the fight continues! Text in bubbles: We are closer than ever to getting the ME/CFS Research Roadmap funded. The Office of the Surgeon General is ready to work with us. The fight for Medicaid protections continues. Take action today!
Calendar page showing Sunday, November 22, with text 'save the date' and #MEACTION 2026 Artist Salon announcement. Background is watercolor greens with slight creams.
Photo of Ben Hsuborger (white man with brown hair and beard wearing headphones, gray tee, and glasses) holding a laptop sitting in a tan chair with a slight smile for the camera. Graphic in top corner says not all heroes wear capes. Text: Ben Hsuborger is attending multiple presentations regarding Medicaid work requirements today to make sure we have the most up-to-date info!
Virtual workshop on managing uncertainty and chronic illness with Marisa Renee Lee, scheduled for August 14, 2026, at 12 PM EDT. Photo of Marisa Renee Lee in center. Black woman with long slightly curled hair wearing a purple sweater smiling sitting in front of a bookcase. Text above and below about the workshop. Books Waiting for Dawn and Grief is Love pictured at bottom of image.
: Jaime Seltzer (white woman with dark hair pulled back wearing glasses, a gray blazer, and headphones sitting on a couch with staircase in background) and Stephanie Grach (white woman with long dark straight hair wearing glasses and dark floral top with blurred background) take turns sharing information about the emergency department survey that is included in the post. Captions embedded.
Light brown dog wearing a blue collar sleeps on a colorful blanket holding a yellow pencil in its paw. Text at bottom of photo: Need some help writing your comments about Medicaid work requirements? Deja has offered her services but we also have a template!
Slide from RECOVER-TLC webinar with a chart showing progress toward clinical trials. Sllde on study progress: Baricitinib is the only one in recruitment stage. GLP-1 agonist, low-dose naltrexone, & stellate ganglion nerve block have gone through draft, public comment, and are in full protocol development stage.
Save the date for Coffee with a Clinician on August 12, recognizing Severe ME Awareness Month. Simple graphic with the date August 12th circled. Text: Save the date! Coming soon. "coffee" with a clinician in recognition of Severe ME Awareness Month. Logos for Bateman Horne center, MEAction, Open Medicine Foundation, and Solve M.E, are at the bottom.
Two hands (one set of hands is brown and the single hand they are clasping is deep brown) gently clasped together symbolizing support. Text: ME caregivers support call 3rd Saturday of the month 1:30 to 3:30 pm ET. For caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions. https://www.meaction.net/event-list
Video description: Shalida Dobbins (Black woman with hair pulled back wearing black glasses, a brightly colored tee, and a shawl or blanket) speaks to the camera about the upcoming Artists salon. Captions added.
Stack of magazines with headline "#MEAction supports complaint filed about harmful Wired article" Quote from Scott Hugo underneath headline: “We are not requesting your organization to resolve legitimate scientific disagreement, or to pronounce on the mechanisms of Long COVID itself; instead, we are requesting that you assess whether the article and Wired’s subsequent response complied with journalistic standards for accuracy, context, fairness, transparency, and accountability.”
Cover of 'Waiting for Dawn' by Marisa Renee Lee with event details for a virtual Q&A on July 14th at noon EDT with MEAction. Photo of Lee - a Black woman with long straightened hair with curling ends wearing a purple top sits in front of shelf and smiles at the camera. Cover of book: Swaths of yellows and reds with shades in between are the backdrop to the text: Waiting for Dawn Living with Uncertainty
"Medicaid Monday updates and resources. Take action!" Simple text-based graphic in orange and reds.
Announcement for the Severe ME Artists Project 2026 with a July 24th entry deadline and website details. Background in watercolors using peach, white and minty teal. Text: Severe ME Artists Project 2026 Deadline to enter July 24th Details on our website. #MEAction
Bright red background with bold white text thanking supporters for reaching a $200,000 fundraising goal. Text: Thank you, everyone! We met our fundraising goal! $200,000
July 2026 important dates for #MeAction events including workshops, Q&A, and submission deadlines. July 9 Disability pride workshop July 14 Virtual interview with Marisa Renee Lee July 16 Artist workshop July 24 deadline to submit Severe ME art July 31 Medicaid deadline
Cover of 'Waiting for Dawn' by Marisa Renee Lee with event details for a virtual Q&A on July 14th at noon EDT with MEAction. Photo of Lee - a Black woman with long straightened hair with curling ends wearing a purple top sits in front of shelf and smiles at the camera. Cover of book: Swaths of yellows and reds with shades in between are the backdrop to the text: Waiting for Dawn Living with Uncertainty.
Background is disability pride flag. Text in each corner: #MEAction Disability Pride workshop July 9th 2 pm ET Registration required. Disability flag description: Black background with one stripe each of green, blue, white, yellow, and red.
2 photos and information on 2 events with MEAction and Marisa Renee Lee. Photo 1: Book entitled Waiting for Dawn Living with Uncertainty by Marisa Renee Lee with artistic background with yellow and light red swaths of color. Photo 2: a Black woman with curly chin length hair wearing a black top and smiling so big. Text box 1: July 14 12 pm EDT Waiting for Dawn: Living with Uncertainty Q & A Text box 2: August 14 12 pm EDT Dealing with Uncertainty and Chronic Illness - A Workshop
Text: "You did it! Now share with your friends and family and ask them to submit a comment. We offer a sample post & graphic." Two screenshots beside the text show the sample social post wording and graphic.
Step 6: confirm you are not a robot to receive a tracking number for comment submission. Two screenshots showing the captcha and the comment successfully submitted.
Step 5 instruction highlighting that only comments with a red asterisk must be answered, focusing on identifying as an individual in the form. Screenshot shows where you mark I am an individual.
Step 4. Text: "Paste the comment and edit under write a comment. If you are making significant edits you might want to do that in a document first." Screenshot showing instructions to paste and edit comments under 'Write a Comment' on a Medicaid program rule page by CMS
Step 3. Text: Follow the link to where you submit your comment. Screenshot shows highlighted URL visible on a webpage about CMS rules.
Step 2. Text: "Copy the comment that you can edit however you like!" Screenshot of a public comment template highlighting a statement from a person with ME/CFS urging CMS to recognize ME/CFS and Long COVID in medical definitions and protect disabled communities' healthcare access.
Step 1: "Go to the link in our bio or the QR code! And we provide a template with all you need!" Screenshot of template next to text
Step-by-step guide to submitting a public comment on Medicaid work requirements for people with serious medical conditions, with a QR code to access the MEAction template. Text: People with serious or complex medical conditions should be exempt from Medicaid work requirements. Period. Join us in submitting your own public comment. MEAction template available!
Background is disability pride flag. Text in each corner: #MEAction Disability Pride workshop July 9th 2 pm ET Registration required. Disability flag description: Black background with one stripe each of green, blue, white, yellow, and red.
Colorful abstract background (green, blue and orange swaths of paint) with text: #MEaction virtual art workshop by Nyx Mir July 16 at 2 pm ET. Application required due to limited space.
The word 'rest' written in sand on a beach with gentle waves and a 'Summer Break' announcement for June 29 - July 3, 2026.
Shalida Dobbins (a Black woman wearing glasses and a gray tee with bright writing) speaks directly to the camera with a paneled wood wall behind her. Captions embedded.
Simple text-based graphic with red background and white banners with red writing. Text: 6 months 1 community Enormous stakes #MEAction has shown up at NIH, at HHS, on Capitol Hill, in medical journals, and in living rooms and support groups around the world. 4000 signatures 42 states 1 million people reached 2 peer-reviewed papers Countless lives touched.
Shalida Dobbins (a Black woman wearing glasses and a gray tee with bright writing) speaks directly to the camera with a paneled wood wall behind her. Captions embedded.
White woman with long blonde hair wearing a red Still Sick Still Fighting shirt and jeans speaks into a microphone while standing in front of the DC HHS building
Colorful abstract background (green, blue and orange swaths of paint) with text: #MEaction virtual art workshop by Nyx Mir July 16 at 2 pm ET. Application required due to limited space.
Screenshot from community meeting showing Omar Wasow (a man with medium dark skin wearing a blue shirt with short curly black and gray hair) sits in front of a bookcase and speaks to the camera. Text: #MEAction Post- #MillionsMissing Community meeting. Recording now available!
Watercolor background with a white box with instructions for Severe ME Artists Project. If you need help submitting your work, please email us! We are happy to help. sMEartistsproject@meaction.net Submit one piece of artwork - image, writing, or video Label your artwork with your name as you want it to appear, an underscore, and the number of years with severe ME Example: Lastname_FirstName_14 No copyrighted material Videos should be under 2 minutes Submission due by July 24th
Background is disability pride flag. Text in each corner: #MEAction Disability Pride workshop July 9th 2 pm ET Registration required. Disability flag description: Black background with one stripe each of green, blue, white, yellow, and red.
What actions can we take? MEAction launched our Frail and Furious campaign last year. We know most people ME and Long COVID are too sick to meet work requirements. Our campaign was created to ensure our community can access the medical frailty exemption and keep the healthcare they need to survive. Please join our campaign! Learn more at meaction.net
Is there any positive news? For the first year of the program, the IFR says states should allow people to self-declare that they are medically frail, at least in limited circumstances. We will continue advocating for self-declaration to remain available as a permanent part of the program, and be incorporated into exemption processes whenever possible. Many disability and healthcare advocates have raised concerns, and we expect continued advocacy, public pressure, and possible legal challenges. We will continue pushing for policies that reflect the realities of people living with ME and Long COVID.
How does this affect our community? “For people who are saying that in order to receive service from the government, you have to do labor, when performing physical and cognitive labor is what makes ME worse, sometimes permanently, is an incredible lack of understanding and an incredible injustice. Attempting to impose work requirements in order to receive assistance is going to make so many people sicker. It's going to make so many people lose their lives.” Jaime Seltzer - MEAction Scientific Director
Of Medicaid enrollees ages 19-64 with a disability, about one third (32%) receive disability income (SSI or SSDI) leaving nearly seven in ten (68%) adults on Medicaid with a disability who do not receive disability income.
This means disabled people have even more barriers and paperwork, just to keep their healthcare. The guidance could lead to more documentation requirements and administrative hurdles. This creates additional burdens for state agencies, healthcare providers, and — worst of all — for chronically ill and disabled people who do not already have a disability designation.
CMS just released 400 pages of guidance to states. These guidelines will shape what happens next. The medically frail definition became more restrictive. The new guidance says it is not enough to have a serious or complex medical condition. People will also need to prove that their condition significantly impairs their ability to meet work requirements.
OBBA requires most states to implement Medicaid work requirements. Under these new requirements, certain adults on Medicaid will need to document 80 hours per month of work or other qualifying activities. Those who do not meet the requirements or qualify for an exemption could lose their coverage.
H.R.1 (aka the One Big Beautiful Bill Act - OBBA) makes the most dramatic changes to Medicaid since the program started in the 1960s. The cuts total more than $1 trillion over 10 years – the largest reduction in the program’s history. The Congressional Budget Office estimates the number of people who are uninsured in 2034 will increase by 10 million.
Medicaid is the nation's largest health insurance and long-term care program. About 1 in 5 Americans rely on it for healthcare.
Facts About Medicaid and upcoming changes that we all need to know. #MedicaidMondays Red #MEAction logo at the top. Black text on white background
Juneteenth graphic with text. Black background and red, green, and yellow paint swaths in corners. Text: June 19 Juneteenth Freedom Day Honor Reflect Learn Juneteenth is a moment to celebrate freedom and reckon honestly with who that freedom has and has not reached. For the ME and Long COVID community, that reckoning is personal.
Two people (one black man and one Creole woman) wearing red Frail and Furious shirts, one standing and one seated in a wheelchair, participating in a #ME Action event outside HHS. Text: New update. Frail and Furious. Take action today! meaction.net
Announcement for the Severe ME Artists Project 2026 with a July 24th entry deadline and website details. Background in watercolors using peach, white and minty teal. Text: Severe ME Artists Project 2026 Deadline to enter July 24th Details on our website. #MEAction
Bold text 'FRAIL & FURIOUS' with a call to exempt people with serious medical conditions from Medicaid work rules and a QR code for submitting comments. Text: People with serious or complex medical conditions should be exempt from Medicaid work requirements. Period. Join us in submitting your own public comment. MEAction template available!
Two hands (one set of hands is brown and the single hand they are clasping is deep brown) gently clasped together symbolizing support. Text: ME caregivers support call 3rd Saturday of the month 1:30 to 3:30 pm ET. For caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions. https://www.meaction.net/event-list
Accessible Virtual Pride Celebration An online event. July 4-5, 2026. Sign Up to Join our FREE online event. White banner with sun at the top with rainbow colored sunrays from the center to the edges. Flier reads Flier reads “Accessible Virtual Pride Celebration. An online event. July 4-5, 2026. CallingUpJustice.com/Accessible-Virtual-Pride-2026/ & OneFreeCommunity.com.” Two logos: Calling Up Justice a Black & White Logo and the One Free Community a Purple Logo with rainbow letters reads OFC
Graphic in red and white about virtual community meeting for #MEAction scheduled on June 14, 2026, at 3:00 PM ET with optional cameras and required registration. Photo of 4 people in an online meeting on a screen. Text: community meeting June 14, 2026 3 pm ET Registration required. meaction.net Virtual meeting- cameras optional.