The #MEAction Network

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.

08/31/2026

MEAction Scientific Director Jaime Seltzer speaks at the special Severe ME Coffee with a Clinician hosted by our friends at Bateman Horne Center with Solve ME/CFS Initiative, Open Medicine Foundation & MEAction. See the full video on their YT. Link in our bio.

Severe ME is the most severe form of myalgic encephalomyelitis. Today is the last day of Severe ME Awareness Month. Severe ME Day on August 8th was started by the 25% group and the community has expanded on that to include the full month as there is so much to share.

While the month comes to an end: the shares, focus, education, advocacy, and fight will continue.



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 asks a question and Jaime replies. Video is captioned.

08/30/2026

¡Nos entusiasma compartir noticias de Pillow Writers en Español!

«Pillow Writers en Español» es un grupo internacional de escritura en español para personas con EM/SFC o COVID persistente (Long Covid). ¡Sus reuniones se reanudan el 1 de septiembre! Obtén más información aquí: https://pillowwriters.wordpress.com/2025/03/05/informacion-sobre-pillow-writers-en-espanol

Las reuniones de Pillow Writers están abiertas a cualquier persona con EM/SFC o COVID persistente/síndrome post-COVID.

El grupo está abierto a escritores de todo tipo, desde autores publicados hasta quienes escriban por primera vez y tengan interés en compartir sus textos en español.

A partir del 1 de septiembre, contaremos con una anfitriona invitada especial: la reconocida poeta Maria R. Palacios, quien conducirá nuestras sesiones de Pillow Writers en Español. Muchas gracias a Maria ( ).

English:
We are thrilled to share some news from Pillow Writers en Español!

“Pillow Writers en Español” (Pillow Writers in Spanish), is an international ME/CFS/Long Covid writing group in Spanish language and their meetings start back on September 1st!
Pillow Writer Meetings are open to anyone with ME/CFS or Long Covid/post-covid syndrome.

Pillows en Español is open to all kinds of writers, from published authors to first time writers who are interested in sharing writing in Spanish.

Beginning September 1, we will have a special guest host, renowned poet Maria R. Palacios for our Pillows en Españos sessions. Thank you so much to Maria .

*A huge thank you for the amazing member of Pillow Writers en Español who worked with me to get this post ready and out! That said not to worry about tagging them but I wanted to extend my thanks!


Alt text embedded.

08/29/2026

As we come to the end of Severe ME Awareness month, we want to share so much love to each member of our community - whether you can be online or whether we know your story - we hold you in love. We fight for you. We show up over and over determined to create change.

We have grieved for those we have never met. We carry names written on our hearts. We hold vigil outside those doors where someone inside cannot handle another human’s presence.

We bear witness to your suffering and your joy; we hope to ease one and increase the other. We are honored to share your stories, your art, your hopes, your pain. We do not do it lightly.

And though we are at the end of this awareness month, we will not stop the fight, the awareness, the sharing ... because the need never stops.

Let us all take care of one another as best we can. Reach out to someone and let them know you are thinking of them. Commit to joining in an action to effect change.

Check out stories that have been shared. See or listen to amazing art so generously shared with us.

The one thing we want you to feel to the depths of your being is you are loved and worthy.

Ways you can help and join in:
- Share your story. Amplify the stories of others. We have been sharing throughout the month. Check out our highlights on Instagram.
- Visit our Severe ME Artists Project. We have 6 years worth of powerful art.
- Watch our Severe ME Artists Project Community Watch Party with CoRy. All written pieces are read aloud.
- Donate to an org doing the work and also watch for mutual aid opportunities.
- Watch the “Coffee with a Clinician” special about severe ME that , Bateman Horne Center, Solve M.E., and Open Medicine Foundation aired on August 12th.
- Send someone a direct message or leave them a comment on their social media. Let them know you are thinking of them.
- Send some love out to someone who is isolated with severe ME, and trust it to land with someone who needs to feel that love today.

L i n k s will be added to c o m m e n t s for the above!



Alt text embedded

08/28/2026

is excited to announce we are 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.

08/27/2026

You are invited to the MEAction Artist Salon on November 22nd at 3 pm ET. https://www.meaction.net/event-details/meaction-artist-salon-2026

The MEAction Artist Salon is a creative, virtual gathering where everyone in our community is invited to attend live and share their art with the wider community. All types of artwork are welcome - paintings, photography, writing, crafts, music, and more.

Each person will be invited to share and talk about their art. Please aim for 5 minutes or under. We might have to make it a little shorter depending on the number of people who choose to attend and share so that all can have time. We can react and chat in the comments. We have past artist salons on our YouTube channel if you want to check those out.

You are welcome to join and share your art and you can also attend and just enjoy the art and company!

08/26/2026

Calling all constituents in West Virginia and Maine - WE NEED YOUR HELP!

The Senate Labor-HHS Appropriations Subcommittee is expected to discuss including $50 million in appropriations for the ME/CFS Research Roadmap in upcoming weeks!

If you live in WV or Maine - or have family or friends that do - now is the time to CALL YOUR SENATOR to ask them to support funding the ME/CFS Research Roadmap. Check out our easy call and email script here: https://ow.ly/J6TT50ZFRjx

In May, and met with key Senators to discuss including $50 million to the ME/CFS Research Roadmap in Congress’ 2027 budget.

In July, met with six Senate offices who sit on the Labor-HHS Appropriations Subcommittee to discuss appropriating $50 million in funding to the ME/CFS Roadmap. The two Senators that have the most power to make this happen are Senator Collins and Senator Capito. At that time, received a commitment from Senator Collins office that the entire Labor-HHS Subcommittee will review our language on the Roadmap.

FUNDING FROM THE NIH: We are simultaneously pursuing funding directly from the NIH’s Office of the Director. We have sent several letters to the two recent NIH directors, and are coordinating with the Office of the Director to discuss next steps.



alt text embedded.