#MEAction Network

Hope it helped! I am glad you exist, christy!

Text based graphic with soft soothing colors or creams and light greens. Text: Reminder to take care of yourself! Step 1: Close your eyes. Take 3 deep breaths. You can put your hand on your chest and feel the movement. Step 2: Take a few minutes (or however long works for you) and breathe in for 4 and out for 6. Step 3: Say something kind to yourself.

This is your reminder to stop a moment & take care of you. So let's breathe together & take a moment to be kind to ourselves.

If the 3 steps feel too much to do- just take 3 deep breaths & say something kind to yourself. Be as encouraging to yourself as you would to a friend.

I also learned from interviewing @edwincpark.bsky.social that there's no guarantee that people who get Medicaid through SSI will be exempt from work requirements either. Like, these are people who have gone through a lot of paperwork for the government to see them as disabled enough.

Our deep dive into this issue has shown it is anything but simple! Headscratching....headache-inducing...the number of times we have used the word nuanced!

Sources  KFF is a nonpartisan, non-profit organization that is a leading provider of health policy information. https://www.kff.org/medicaid/understanding-the-intersection-of-medicaid-and-work-an-update/ The Center for American Progress is an independent, nonpartisan policy institute.  https://www.americanprogress.org/article/the-truth-about-the-one-big-beautiful-bill-acts-cuts-to-medicaid-and-medicare/ The Center for Health Care Strategies (CHCS) is a policy design and implementation partner devoted to improving outcomes for people enrolled in Medicaid.  https://www.chcs.org/resource/a-summary-of-national-medicaid-work-requirements/

Sources:

KFF
www.kff.org/medicaid/und...

The Center for American Progress
 www.americanprogress.org/article/the-...

CHCS
 www.chcs.org/resource/a-s...

Before states start enforcing the new work rules, the HHS Secretary must issue guidance  that will shape how states decide who counts as "medically frail." TAKE ACTION ON THIS NOW. Sign our letter to the HHS Secretary. The bill requires that the Secretary of Health and Human Services (HHS) provide  implementation guidance to states by June 1, 2026, including definitions and clarifications of standards mentioned in the bill text. (CHCS) The full impact of these changes will depend on how CMS interprets, implements, and monitors these new requirements. Guidelines from HHS, along with a limited amount of implementation funding, will shape how states operationalize their policies.  (CHCS)

Before states start enforcing the new work rules, the HHS Secretary must issue guidance that will shape how states decide who counts as "medically frail."

We have been busily preparing the next step & will share soon!

Take action now: www.meaction.net/freakin-frail

Changes are coming- a trillion dollars in benefits cut, at least 10.5 million people eliminated from Medicaid/CHIP, states will cut services, and and proof of work or exemption eligibility will be required.  “Research shows that when federal funding for Medicaid decreases, states tend to cut optional benefits such as home- and community-based (HCBS) first”. AP “The OBBBA requires individuals to prove that they are working, engaging in community service, or receiving work training for at least 80 hours per month—or that they are enrolled in school part time—unless they qualify for an exemption…That includes at least more than 2.6 million adults with disabilities who don’t have SSI or SSDI and have difficulty working due to disability or illness.” AP OBBA stands for One Big Beautiful Bill Act passed by Congress in 2025.

Changes are coming- a trillion dollars in benefits cut, at least 10.5 million people eliminated from Medicaid/CHIP, states will cut services, and proof of work will be required.

#pwME #Medicaid #pwLC #Disability

A majority of people on Medicaid who self-identify as having a disability are not enrolled through the disability pathway.  That means that the many people with Medicaid with a disability may be forced to work 80 hours per month or lose their Medicaid - which includes  many people with ME/CFS and Long COVID. “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.” KFF “In 2023, only 10.1% of Medicaid enrollees (roughly 9.5 million people) qualified for Medicaid through a disability-related pathway.” KFF

A majority of people on Medicaid who self-identify as having a disability are not enrolled through the disability pathway. That means that many disabled people on Medicaid with could be forced to work 80 hours per month or lose their Medicaid - which includes many people with ME/CFS and Long COVID.

Graphics all have black background with red accents and white writing. The #MEAction logo is in top corner. Graphic explaining upcoming Medicaid changes with mandatory work requirements. "Medicaid Facts. One of the upcoming changes to Medicaid is mandatory work requirements. While it is falsely made to sound simple- hey people with disabilities are excluded from that right? - in reality it will be anything but simple. Here are some very important facts to help understand the issues."

Thanks for joining in to learn more about Medicaid so we can prepare for upcoming changes!

One of the changes to Medicaid is mandatory work requirements. While it is falsely made to sound simple- hey people with disabilities are excluded from that right? - in reality it will be anything but simple.

ME/CFS affects millions but isn't part of standard clinical training. This Advocacy Week (Mar 23–27), Solve M.E. & #MEAction Network will ask patient safety agencies to support our mission to introduce #MECFS questions into qualifying national medical exams.
Sign up:
🔗https://ow.ly/GbOp50YoTVe

Announcement for ME/CFS Advocacy Week 2026 from March 23 to 27 with upward arrows and a megaphone graphic. Megaphone in top corner. Solve M.E. logo and MEAction logo under each arrow.

#MECFS affects millions but is NOT part of standard clinical training.

This Advocacy Week (Mar 23–27), Solve M.E. & #MEAction Network will ask patient safety agencies to support our mission to introduce ME/CFS questions into qualifying national medical exams.

Register: https://ow.ly/Tqet50YoPG7

A single candle burns in the forefront and a multitude of blurred lights are in the background. Text: Disability Day of Mourning March 1st.

CN: violence
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Today is the Disability Day of Mourning. The disability community will gather to remember disabled victims of filicide – disabled people murdered by their family members or caregivers. https://ow.ly/Y9oG50Yn6ar

#DDofM2026 Autistic Self Advocacy Network (ASAN)

300 million people globally live with a rare disease, highlighted for Rare Disease Day on February 28, 2026. Simple graphic with blue background and rare disease day logo #RareDiseaseDay and rarediseaseday.org are listed at the bottom.

We are sharing in support of #RareDiseaseDay! Myalgic encephalomyelitis (aka ME/CFS) is NOT a rare disease but we understand many of the struggles faced by those with rare disease. Some of us also have co-morbidities that are rare. You can learn more at rarediseaseday.org.

We are continuing our Medicaid education as we continue building our campaign regarding work requirements and our community. Scroll back to find information on how Medicaid changes affect us all and stay tuned for upcoming key Medicaid changes and facts.

"What exactly does that mean in practice? Medicaid works by reimbursing hospitals, doctors and other providers for care delivered to eligible patients using a combination of federal and state funds."

Source: health.usnews.com/wellness/art...

Simple graphic with question "How does Medicaid work?" at top and answer below. “While the program operates under broad federal guidelines, states play a central role in shaping Medicaid: They set eligibility rules and determine which services are covered and administer the program day to day. The federal government then reimburses a share of each state's Medicaid spending."

“While the program operates under broad federal guidelines, states play a central role in shaping Medicaid: They set eligibility rules and determine which services are covered and administer the program day to day. The federal government then reimburses a share of each state's Medicaid spending."

Simple graphic with question: How many people are enrolled in Medicaid? at the top and answer at the bottom.  Approximately 83 million people are enrolled in Medicaid, covering 1 in 5 nationally, with coverage varying by state. 4 in 10 children. 1 in 6 adults. More than 1 in 4 adults age 19-64 with disabilities.

Around 83 million people are enrolled.

1 in 5 people have Medicaid nationally, but this number varies across the states.

Medicaid covers nearly 4 in 10 children and 1 in 6 adults. (2023)

Medicaid covers more than 1 in 4 adults ages 19-64 with disabilities.

Source: www.kff.org/medicaid/10-...

Explanation of Medicaid as a health coverage program for low-income Americans, including children, pregnant women, elderly, and disabled, funded by states and federal government. Simple graphic with cream background and black and red accents. What is Medicaid? is at the top and reply is at the bottom.

Happy Friday! What better way to spend the day than taking a moment to learn about Medicaid? Ok- it is not on my top ten list of fun Friday activities but it is so important to our community. So let’s dive in!

Let's start with the basics- What is Medicaid and how does it work?

#pwME #Medicaid

Flyer for a Society for Disability Studies talk on living, working, and surviving financially with long COVID by Deborah Lefkowitz, March 2 at 12pm EST. Background is cream with green accents and photo of Lefkowitz (headshot of a person with light to medium skin tone with curly gray hair smiling at camera) Text with further details including it will be a 40 minute talk with 35 minute Q & A. 5 minute break. Access copy of talk and slides provided.

Upcoming virtual talk: Navigating Disability: Living, working, and surviving financially with long COVID with Deborah Lefkowitz will be held on March 2 at 12 pm EST. Register: https://tinyurl.com/r3v5erxr

#longCovid #Disability#pwME

All caregivers for those with complex chronic illness are welcome!

Email the leader at kim@caregiverwisdom.net if you’d like to join!

#caregiver #PwME #MECFS #LongCovid

#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...

Join our monthly Partner Caregiver call this Sunday, March 1 at 3 pm ET. We’re focusing on “Caregivers as Catalysts for Change."

@meactnet.bsky.social & @solveme.bsky.social will share practical ways caregivers can turn lived experience into meaningful advocacy.

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

@ashleydaltonmp.bsky.social
Your words “these must become never events”

PLEASE INTERVENE TO SAVE LIFE
Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS

www.meresearch.org.uk/claims-of-nh...

Sharing personal fundraiser policy #MEAction sharing personal fundraiser policy This policy begins in August 2025. In recognition of the need for mutual aid, #MEAction has offered to share personal fundraisers once per calendar year ...

Our mutual aid fundraising policy can be found here: docs.google.com/document/d/1...

We were asked to share this fundraiser for a community member in need.

Nevra @nlizaki.bsky.social has severe ME and is in hospital in Pakistan. Nevra has been active in our online community for years.

Please see video and links below.

#SevereME #pwME #MyalgicEncephalomyelitis #disability

4. Workforce disruptions and new roles

This could create more accessible roles in healthcare but it is tricky as ensuring quality matters.

Hopefully this helps us all understand how these changes can affect us all. Watch for more Medicaid content! We are all in this together!

#MyalgicE

3. Rising health care costs for everyone

As states and health systems absorb more uncompensated care, costs are likely to rise across the board. Even people who aren't on Medicaid are going to feel this.

2. Increased strain on hospitals and providers

When hospitals close departments or shut down entirely, the effects extend beyond Medicaid beneficiaries: Entire patient populations in the region they serve are impacted.

1. Greater cost burden on states

As federal Medicaid funding declines, they may consider options including raising taxes, cutting eligibility, & reducing services or provider payments. Optional services such as respite care and vision and dental care could be the first to go.

A recent @usnews.com article shared 4 ways the upcoming changes affect us all - even those who do not have Medicaid now. Thanks to Christine Comizio, MPH, for a great article.

#Disability #MECFS

Graphic with list of 4 ways Medicaid changes affect everyone. 1. Greater cost burden on states 2. Increased strain on hospitals and providers 3 Rising health care costs for everyone 4. Workforce disruptions and new roles Black background with each point in a white box with red accents. Credit at bottom: Information from article in US News & World Report by Christine Comizio

As we continue to build-up our campaign regarding Medicaid work requirements, we will also be spending time helping us all understand Medicaid and the upcoming changes.

Today, we are focusing on how Medicaid changes affect everyone in the US.

health.usnews.com/wellness/art...

#Medicaid #PwME