The #MEAction Network

The #MEAction Network is an international network of patients empowering each other to fight for health equity

is an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome.

We have an exciting opportunity for you this Disability Pride Month ! We are offering a special art workshop with multid...
06/24/2026

We have an exciting opportunity for you this Disability Pride Month ! We are offering a special art workshop with multidisciplinary artist Nyx Mir on Thursday, July 16, 2026 at 2pm ET.
https://www.meaction.net/event-details/art-workshop-with-nyx-mir

Nyx Mir is an interdisciplinary designer & creator of the ILLMARKS project, where they visualize chronic illness experiences through visceral body art.

This interactive workshop will offer artists the opportunity to explore creativity and self-expression in a supportive and accessible environment. Whether you're an experienced artist or simply curious about creating, all skill levels are welcome.

Before the workshop, templates and instructions will be emailed in advance to give you an idea of what to expect. Breaks will also be given during the workshop to make sure we are all pacing.

Because space is limited, interested participants must complete an application form to be considered for attendance. Deadline to apply is June 30th.

On June 14th, we had a full and inspiring ’s Post- Community Meeting. Check it out and see all details in the descripti...
06/24/2026

On June 14th, we had a full and inspiring ’s Post- Community Meeting. Check it out and see all details in the description here: https://ow.ly/xfIu50Zg069

We reflected on the deep impact of storytelling at this year's , shared advocacy wins, and discussed our ongoing work to secure funding for the NIH ME/CFS Research Roadmap and ensure that ME and Long COVID are recognized — by governments across the world — as serious, complex medical conditions.

Thank you for all who attended!

A reminder that our Severe ME Artists Project 2026 is coming up! Deadline to submit is July 24th. All the info you need ...
06/23/2026

A reminder that our Severe ME Artists Project 2026 is coming up! Deadline to submit is July 24th. All the info you need is here: https://www.meaction.net/post/severe-me-artists-project-2026-call-for-entries

***Please note if you had an issue uploading a video, that is now fixed! Please retry!***

Our Severe ME Project grew out of a desire from our community to share their art. We offered a live video Artists Salon (and plan to again later this fall), but that is not accessible to many with severe ME. We have received such an amazing response each year.

Please know that you can email us for help! We are here to help you! Email us at [email protected].

Instructions:
- 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
FirstNameOnly_7

- No copyrighted material

- Videos should be under 2 minutes

- Submission due by July 24th

As always, holding everyone who cannot participate close. You are always in our hearts and minds.



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Image description: Watercolor background in greens, tans, reds with a white box in center with instructions for Severe ME Artists Project 2026. Instructions in post.

July is Disability Pride Month, and we're celebrating with a special Writing Workshop presented by our Narrative Working...
06/23/2026

July is Disability Pride Month, and we're celebrating with a special Writing Workshop presented by our Narrative Working Group on July 9th 2026. We'd love for you to join us.

Disability Pride Month is an opportunity to recognize the strength, creativity, history, and diversity of the disability community. It's a time to honor our stories, challenge stigma, and celebrate the unique perspectives that disabled people bring to the world.

In this special workshop, we'll use fun writing prompts inspired by disability pride, identity, joy, resilience, community, and self-expression. Whether you're a longtime writer or have never shared your words before, you'll find a welcoming and supportive space to explore your experiences and creativity.

Date: July 9, 2026
Time: 2 PM EST
Registration: https://ow.ly/HZrX50ZfnZP

There is no right way to participate. Write, reflect, listen, share, or simply enjoy being in community with others. All are welcome, and sharing your writing is always optional.

Let's celebrate Disability Pride Month together through storytelling, creativity, and connection.



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ID: Background is disability pride flag. Text in each corner: 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.

It is Monday and that means it is time for ! Today we are sharing facts about Medicaid, upcoming changes, and how to ta...
06/22/2026

It is Monday and that means it is time for ! Today we are sharing facts about Medicaid, upcoming changes, and how to take action. See our campaign page here: https://www.meaction.net/frail-and-furious-usa

1. Medicaid is the nation's largest health insurance and long-term care program. About 1 in 5 Americans rely on it for healthcare.

2. H.R.1 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.

3. 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.

4. 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.

5. 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.

6. 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.

7. 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

8. 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.

9. 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!



All graphics are black writing on a white background with a red logo and the number of the fact.
ID 1: Facts About Medicaid and upcoming changes that we all need to know.

ID 2- 10- are the facts listed in the post.

Juneteenth is a moment to celebrate freedom and reckon honestly with who that freedom has and has not reached. For the M...
06/19/2026

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.

The intersections are real and documented.

Black Americans experience disability at significantly higher rates than the general population. According to the U.S. Census Bureau's Survey of Income and Program Participation, 31.8% of Black non-Hispanic adults report having a disability-related health condition, well above the national average. The CDC estimates roughly 25% of Black Americans live with disabilities, compared to 16% of white Americans and 17% of Hispanic Americans.

Black Americans are also significantly more likely to develop Long COVID than white Americans. Yet they are less likely to receive a formal diagnosis or appropriate follow-up care. The same medical disbelief and diagnostic delays that have plagued the ME/CFS community for decades fall harder on patients of color, compounding an already inequitable system.

Disability and race compound in every system.

Black people with disabilities do not just face one barrier, they navigate overlapping systems of racism and ableism simultaneously. Black students with disabilities are suspended or expelled at disproportionate rates. Black adults with disabilities are more likely to be incarcerated or subjected to police violence. They are the same problem, showing up across every institution.

Medicaid is not a safety net that catches everyone equally.

34% of Medicaid enrollees report having a disability but did not enroll through a formal disability pathway, leaving them vulnerable when work requirements take effect. Black and brown disabled people face both the administrative burden of proving disability and the structural barriers that make that process harder to navigate. For people with ME and Long COVID, whose conditions are frequently invisible and poorly understood, those barriers are even steeper.

People with ME and Long COVID know what it means to be dismissed, disbelieved, and left out of the systems meant to protect them. We must ensure that our fight for recognition does not replicate those same exclusions.

On Juneteenth, we are reminded that the intersectionality must be ever-present.



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We have a Medicaid update for you! https://www.meaction.net/post/frail-and-furious-10-things-you-need-to-know-about-ne...
06/18/2026

We have a Medicaid update for you! https://www.meaction.net/post/frail-and-furious-10-things-you-need-to-know-about-new-changes-to-the-medicaid-program

The Frail and Furious campaign was launched to protect Medicaid access for people with ME and Long COVID. These new guidelines will shape our advocacy in the months ahead. We've outlined the key facts you need to know, the actions we're taking, and ways you can help protect healthcare access for our community.

It is a big update so we are dividing it up on social media. Today, we will focus on the actions you can take: (all links can be found in article linked above)

National actions:
1. Share your story about why Medicaid matters to you, at our online community story bank.
2. Submit a public comment to CMS by July 31 using our template.
3. Level 1 Battery action: Share 's Medicaid campaign post and upcoming Medicaid Monday videos/posts on social.

State actions:
1. Attend your state chapter meetings.
2. Watch for our upcoming state advocacy toolkit.
3. If you do not have a state chapter but want to get involved, contact [email protected].

The months ahead will be critical. We will continue advocating at both the federal and state levels to protect healthcare access for people with ME, Long COVID, and other Infection-Associated Chronic Conditions (IACCs). We would love for you to join us.



ID: Two people (David -Black man and Shaina -Creole woman) wearing red Frail and Furious shirts, red medically protective facial masks, and glasses -David standing and Shaina seated in a wheelchair, participating in a event outside HHS. Text: New update. Frail and Furious. Take action today! meaction . net

is thrilled to announce our Severe ME Artists Project 2026 that will feature work from those within the severe ME comm...
06/18/2026

is thrilled to announce our Severe ME Artists Project 2026 that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! Full details: https://www.meaction.net/post/severe-me-artists-project-2026-call-for-entries

This project will be an opportunity for those with severe ME to showcase their artwork, whether through writing, photography, drawing, or any other medium that illustrates their talents. Participants can also submit past artwork created before they got sick.

The Severe ME Artists Project 2026 will feature a video compilation and an online gallery of submitted work. This project is specifically for those with severe ME or for those who ME would not allow them to participate in our video style artists galleries.

PLEASE email us if you need help: [email protected]. We are here to help you!

We want to be clear that many people with severe ME can no longer practice art in any form. Others have been able to find creative ways to continue to find creative expression. We acknowledge the grief at both realities. We are holding space for you as you fight for your very survival.

Psst: We will be having a live video Artists Salon this fall for all who can join in that style this fall.



ID: 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.

People with serious or complex medical conditions should be exempt from Medicaid work requirements. Period. Join us by s...
06/17/2026

People with serious or complex medical conditions should be exempt from Medicaid work requirements. Period. Join us by submitting your own public comment using our template: https://ow.ly/r2vs50ZcwjN .

We are deeply concerned by the Centers for Medicare & Medicaid Services (CMS) interim final rule (IFR), released on June 1st. The rule, which gives states guidelines for implementing Medicaid work requirements, will make it even more difficult for people with ME, Long Covid, and other infection-associated chronic conditions (IACCs) to receive exemptions from the work requirement.

As part of our ongoing campaign, we are calling on you - our community members - to submit a public comment to CMS on this Interim Final Rule, by July 31st. We have done some of the work for you - a proposed template and instructions are available now. We also offer more background with the template.



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Attention caregivers! You are invited to join our ME Caregivers Support Call on the 3rd Saturday of the month- June 20th...
06/17/2026

Attention caregivers! You are invited to join our ME Caregivers Support Call on the 3rd Saturday of the month- June 20th at 1:30 pm ET. All caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions are welcome! https://ow.ly/NM9E50ZcvKK



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