The #MEAction Network

09/10/2026

Content note: su***de loss
We hold those we have lost in our hearts always. We must mourn together.

Join us in lighting a candle to show your support for su***de prevention, to remember a loved one and for the survivors of su***de. Many around the world are choosing 8 pm local time to light a candle. Whenever you feel able, works for our community. You can also post a picture or look at a picture of a candle for those unable to light one.

If you need to reach out, please see our list of resources. Link in our bio.

***dePreventionDay

09/10/2026

Content note: Su***de prevention
Changing the narrative on su***de requires systemic change. It's about shifting from
a culture of silence and stigma to one of openness, understanding, and support.

This can be a difficult topic but it is important we keep talking about it. MEAction maintains a list of crisis resources on our site. https://www.meaction.net/crisis-resources
Link always in our bio.

***dePreventionDay International Association for Su***de Prevention

09/09/2026

The CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call is coming up on September 18th at 3:00 pm ET. Register: https://ow.ly/sJuf50ZLwkm

The guest speaker is Nancy Klimas, MD who will speak on “How Progress in Long COVID is helping us understand ME/CFS.” The webinar will also be featuring program updates from CDC's ME/CFS program staff and a Q&A.

For those unfamiliar with these meetings, "The CDC ME/CFS program holds meetings for people with ME/CFS, their families, healthcare providers, and other community members. Currently, the program holds two Stakeholder Engagement and Communication (SEC) calls each year to update the ME/CFS community on CDC activities and facilitate presentations from guest speakers."

Please note this is the first SEC ME/CFS meeting since December 2024.

All information from the CDC website.

09/08/2026

New webinar TOMORROW.

"H.R. 1 creates a new Medicaid 1915(c)(11) waiver authority that allows states to offer home and community-based services (HCBS) to people who need support but do not yet meet an institutional level of care. This session will explain what the new authority does, how it differs from traditional 1915(c) waivers, and what guardrails states must consider, including needs-based eligibility, cost limits, and protections against increasing wait times for people already seeking HCBS."

📣 TOMORROW 📣 Join us Wednesday, September 9, for a webinar “What to Know About the New 1915(c)(11) Waiver Authority.”
Register now 🔗 https://ow.ly/X7ow50ZFlF6

The Grassroots Project

09/08/2026

Reminder: CLOSES TONIGHT at 11:59 pm ET. is excited to be partnering with the Writers Guild Initiative (WGI) again to offer creative writing workshops for people with ME and Long COVID. To say this has been popular in our community would be an understatement! The deadline to apply is September 8th, 2026. 30 slots are available.

FULL DETAILS: https://www.meaction.net/post/meaction-and-writers-guild-initiative-workshop

WGI has graciously donated its time to offer these writer workshops through personal mentorship with the writers of the community! The workshops consist of three sessions during three Saturdays of September 2026.

The WGI’s mission is to make the art of storytelling accessible to people of all ethnic, cultural, and economic backgrounds – with special attention to the underserved. No writing experience is required.

has always believed in the power of art as a form of advocacy. There’s something powerful about being able to take our experiences, ideas, and emotions and turn them into words that can reach other people.

We’re always looking for new ways to nurture the creativity within our community. This writing workshop is an opportunity to build your writing skills, explore your own voice, and think about how we can use our words to tell our stories and strengthen our collective advocacy.



Alt text embedded.

09/04/2026

Have any thoughts for the long weekend? For those of us in the US, we have a bank holiday weekend. For so many of us, we barely register it because our days can rarely change. For some of us, maybe someone is at home that is normally at work or school.

For those for whom rest is an enforced way of life, rest loses it's positive connotations. First, because rest as many in the world think of it is something we only remember pleasantly. Our "rest" is more cease to function or having functioning so limited we have very little choice in the matter. And in our "rest" there is pain and nausea and dizziness and sound/light/touch sensitivity.

But for this weekend, if we can, let us grab onto that rest that is cozy- that is pleasant- that we might actually want in our lives! Sending out so much love for those who cannot attain this cozy rest. Gentlest of virtual hugs for those who can only work up to 5 minutes of enjoyable rest here and there.

We have some suggestions for ways to pass the time this weekend, if able. Invite others to join you in checking out the art and writings available. Six years of Severe ME Artists Projects are available. We have some amazing books written by members of our community. We are looking at you Pillow Writers and WIMEL writers! Maybe you want to register for our November artist salon? Or look through some art to share there.

Caregivers, please join in the rest. We also have our Partner Caregiver call this weekend that all caregivers are invited to. We also have caregiver resources on our site!

Head to the L I N K s in that place we keep them!

Do you have plans for the weekend? Want to daydream some? Sometimes those daydreams are our only escape!

Most of all can all take a few deep breaths and know that we are worthy and valued. Know that a person working with MEAction spent her morning just sending out love to each of you. (signed, Holly 😉)



Alt text embedded

09/03/2026

Please check out the upcoming MEAction Partner Caregiver Support call! All info below.

Please note that all caregivers are welcome.

When so much keeps changing, how do we stay grounded?

As caregivers, we live with constant change.

Our daily lives change. Our energy and bandwidth change. Our relationships change. Our sense of who we are can change. And the future we once imagined may look very different from the life we’re living now.

At this Sunday’s free Caregiver Wisdom support group, we’ll explore:

💜 Staying Grounded Amid Constant Change
🗓 Sunday, September 6
⏰ 12–1:30 p.m. PDT / 3–4:30 p.m. EDT / 8–9:30 p.m. BST

We’ll have an extended 90-minute gathering this month so we can spend some time not only sharing our experiences, but also practicing two approaches that have deeply strengthened my own resilience as a caregiver:

🌿 Hara breathing — a restorative breathing practice to help calm the body and mind

🌿 Non-attachment — learning to loosen our grip on what we can’t control and meet change with greater steadiness

We’ll also reflect together on questions like:

• What changes have been hardest for you to accept?
• How has caregiving affected your sense of self?
• How have changing circumstances affected your relationship with your loved one?
• What is one change you’re still learning how to navigate?

And, as always, we’ll have time for small breakout groups for honest sharing, connection, and simply being with others who understand.

While we often center on caregivers of loved ones with ME/CFS, Long COVID, and related chronic illnesses, all caregivers are warmly welcome.

If you’d like to join us or learn more, email me at [email protected].

If you’re craving reflection, connection, or simply a place to exhale, you’re welcome here. 💜



The Network Bateman Horne Center Solve MECFS Initiative Open Medicine Foundation Massachusetts ME / CFS & FM Association The Sick Times Patient-Led Research Collaborative World ME Alliance RTHM Cohen Center for Recovery from Complex Chronic Illness PolyBio Research Foundation Complex Disorders Alliance COVID-19 Longhauler Advocacy Project Long Covid Families

09/02/2026

Check out the latest from Jullia Métraux of Mother Jones.

"Duke University cultural anthropologist Emily Lim Rogers looks at the labor it takes simply to exist while sick in her new book Sick Work: Exhaustion, Labor, and Invisible Illness, through the lens of ME/CFS.

We spoke about the history of the condition, the importance of acknowledging differently racialized experiences of chronic illness, and the compounding exhaustion of being ill."

A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.

09/01/2026

We’re excited to announce that has received funding to launch the NextGen IACC Scholars Program, supporting four graduate researchers at Canadian universities to lead studies using MEAction’s Symptom Cluster Characterization in Complex Chronic Disease (SC4D) dataset.

Remember when MEAction launched the Chronic Illness Survey Adventure and collected more than 1.5 million data points on complex chronic illnesses? We’re putting that data to work, and helping develop the next generation of researchers in the process!

MEAction launched SC4D to address a persistent challenge in myalgic encephalomyelitis ( ), , , , and hypermobile Ehlers-Danlos syndrome ( ). Studies are often too small or narrowly focused to identify reproducible symptom patterns, clinically meaningful subgroups, and important differences in illness experience. Mentorship for emerging researchers is also limited, yet it is vital to the growth of the field.

The grant will fund each scholar to develop an original research question into a year-long project. With structured mentorship, scholars will refine their questions, develop and carry out statistical analysis plans, interpret their findings, and work toward a peer-reviewed manuscript and clinician- and public-facing materials.

We’re thrilled to have the opportunity to build on years of community-supported work and turn SC4D into new research, new resources, and new research capacity.

We’ll share more about the scholars program, mentorship team, and application process in the coming weeks. Stay tuned!

This work is supported by an ICanCME Research Network grant, with funding from the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA).

Alt text embedded.

08/31/2026

Our Scientific Director Jaime Seltzer shares about how community and arts help bring us all together as we fight together for a better life for us all. This is a small clip of the special Coffee With a Clinician hosted by Bateman Horne Center for Severe ME Month along with MEAction, Open Medicine Foundation, Solve ME/CFS Initiative, & wimelwriters. Full video on BHC YT. L i n k in our b i o.

Art for the sake of art and for bringing joy and meaning into our lives matters and is worthy of time and attention.

And beyond that the art is part of the fight. Artivism is real. MEAction has done art installations to help show the scope and severity of ME. And we hope to do more.

The writings are powerful. Pillow Writers has two books out now and WIMEL has their first book out. It is aimed at decision makers to help them understand this disease.

Statistics are critical and needed. But the individual stories behind them is often what can move the needle. And our community shows up so powerfully here. And we believe that is worthy of support!

We have workshops and host salons. We are so truly thankful for the many who keep Pillow Writers and WIMEL running. We had one of our first art workshops this year as well as storytelling trainings in spring and summer.

We just announced another writing workshop series with Writers Guild Initiative offered free to our community. Must apply by September 8th!

We appreciate your support so that we can keep building on the support we can offer!



video description: Clayton Powers (white man with short hair wearing a button down shirt) and Jaime Seltzer (white woman with hair pulled back wearing glasses, headphones, and a blazer) are shown on a Zoom style call. Clayton had just asked a question and Jaime is answering. Video is captioned.