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The #MEAction Network

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United States
Princeton, NJ
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.

11/27/2025

sends our gratitude today to this community. You are at the center of everything we do. Thank you for your care, support, and action over the years.

With care from all of us at .

11/26/2025

As we work toward our fundraising goal, we will share the glow by lighting up community rewards.
Together as a community, we can be a place of respite and maybe even some joy.

DONATE TODAY: https://meaction.net/donate

(These are shared community rewards — you do not need to be a donor to participate.)
~
*We will host a drawing to select winners (available for US, Canada, and UK)

11/25/2025

Light Up A Lantern! Everyone who gives $50+ fundraiser, will have the ability to list a name on a lantern.

You may light up a lantern in honor or in memory of someone else. We are very thankful to have a matching opportunity - everyone’s donations are doubled! www.meaction.net/donate

11/25/2025

Something joyful is blooming in our community this month!

To celebrate Family Caregivers Month, we’re unveiling brand-new shirts, sweatshirts, and mugs — created by caregivers for our community.

Our community came together — caregivers, volunteers, designers, friends — to create these items, now live in the store. Find them here: https://www.bonfire.com/store/meaction-1/

You shared slogan ideas.
You voted and offered feedback.
And together, we chose a message that says so much in just a few words:
“Invisible illness, visible love.”

This touching slogan was suggested by Tahlia Ruschioni, executive director of the Bateman Horne Center. In addition to her two decades in healthcare, she has supported family members struggling with ME/CFS for many years, and then developed ME/CFS and dysautonomia following COVID-19 herself.

This phrase spoke to many caregivers who give so much of themselves behind the scenes. Caregivers told us it feels like both a gentle acknowledgment and an invitation to spark conversations about ME to drive more public awareness.

Then Casey Edwards — caregiver to her husband, active member of the Facebook group for caregivers, and talented designer — turned that message into uplifting artwork we can proudly share with the world. She created several designs, and we especially love this one!

Thank you to everyone who helped create these designs. Your love and energy are woven into every shirt and mug.

Thank you to Caregiver Wisdom who has so faithfully prepared and planned for this entire month of content!

Explore the new collection in different colors, styles, and sizes. Every purchase supports programs and helps amplify ME awareness.

11/24/2025

The majority of Long COVID research investigating exercise completely ignores post-exertional malaise (PEM) - one of the core symptoms of .

An analysis by The Sick Times showed that less than 20% of Long COVID trials involving exercise even mention PEM.

’s Scientific Director, Jaime Seltzer, is quoted:
“The flawed idea central to these trials is that exercise is a panacea, and gradually increasing it could treat Long COVID. As a result, the research won’t advance our understanding of the disease’s actual underlying mechanisms, said Seltzer, calling it “money down the drain.”

The Sick Times investigated exercise-related trials registered in the ClinicalTrials.gov database (excluding trials for hospitalized patients or those with an acute SARS-CoV-2 infection), and found that “of 112 exercise-related trial registrations for Long COVID, only 21 mentioned PEM.”

“People who are performing these studies are extraordinarily ignorant, and their ignorance is dangerous,” Seltzer said.

Read the full article here:
https://bit.ly/4p4uAbg

11/23/2025

In a week where thankfulness is on our mind, we wanted to offer a way we can pass some thankfulness and encouragement around to one another! We have come together as powerful force that fights for one another. We also create together, share our joys and sorrows, offer hope and solace...we have built a lovely community. We are thankful for each of you!

Now let's pass some love around! Help yourself to any image and send it over to someone in the community you appreciate or tag them here! Share this post! Add it to a group where you find support. Send it to your messenger friends!

11/22/2025

Got a few moments this weekend? Please read and share! ( I used words social media algorithms do NOT like. So it will not be shown easily but there are really not many euphemisms for fundraiser!)

Shining a light into the darkness, takes everyone. One of the ways you can help spread the light and support is by creating your own personal fundraiser.

Each individual fundraiser connects to one other, creating a string of bright lights. Each working together for the common goal, to be a shining light in this community. Our light is connected to your light.

You can create a fundraiser on MEAction's platform, on Facebook. and/or on Instagram. For our site click on any donate button and it pops up as an option!

When crafting your own fundraiser, it is important to share your story. Make it personal if you can. Maybe go along with our theme and share how has been a light to you.

Once your fundraiser has been created, make sure to share it far and wide! Each share helps to raise awareness and builds a stronger flame to light the darkness.

And don’t forget: Giving Tuesday is coming up - December 2nd! Your personal fundraiser can be a great way to share about and gain attention on that day!

Creating your own fundraiser is not your thing? Then please share our fundraiser with your networks. has our $50K match opportunity, so donations are doubled. And if you are able to, you can give today!

Thanks so much to everyone who supports . You are the light that keeps this whole thing going!

We appreciate you!

11/22/2025

THIS IS TODAY! Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: https://ow.ly/3IcV50XlbZh

All caregivers are welcome! Whether you are new to caregiving or have been caregiving for years, there is something for you. While this workshop will address help for chronic illness caregivers who care for children, teen, and adult children, it will also be useful for all caregivers.

We will provide a safe and supportive space for caregivers to come together, share experiences, and learn practical strategies for navigating the unique challenges of caring for children, adult children, and teens with ME/CFS, Long COVID, and other diseases.

Denise Lopez-Majano is an volunteer who facilitates the Caregiving Support Group. She is longtime ME advocate and caregiver for her two sons, who got sick when they were 12 and nearly 15 years old more than 20 years ago. We appreciate her sharing her wisdom and experience!

11/21/2025

Clinical trials have been pummelled under the Trump administration. Washington Post reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.

Long COVID and ME/CFS research have seen similar setbacks - funding pulled and Long COVID research infrastructure dismantled. ’s Scientific Director responded to the JAMA paper:

“We all know that ending clinical trials mid-stream is unethical,” Seltzer said. “It prevents people from having access to the medicines they need to live full and healthy lives. People participating in clinical trials who noted improvement will now lose access to these drugs. It's also wasteful. The years of research and development represent an investment of expertise, time, and energy as well as millions of dollars, none of which can ever be recouped."

The total count of lost grants includes those that got their funding back, but delays during trials can have profound impacts on the studies and participants.

“If you pause an experiment, especially when it comes to experiments involving drugs and patients where you need a consistent dose over time and consistent measurements, it’s possible that you just screwed up the entire research,” said Vishal Patel, a physician at Brigham and Women’s Hospital in Boston.

Read the WaPo article by Allyson Chiu at link in comments.

11/20/2025

has been working hard this year to be a lantern in the darkness. We have had some wins, moments that stood out, and times where this community made a difference.

In order to continue serving this community, we need your support. We are thankful to have a $50K matching opportunity, so you gift will be matched! See comments for L-i-n-k.

Here are a few wins had this year. In dark times these moments shine brightly.

1. Advocating for funding for the ME/CFS Research Roadmap: Secured a meeting with the NIH Director, and got the roadmap included in Congress’ draft appropriations language.

2. Helping Minnesotans with ME/CFS and Long COVID apply for home care support by launching the Minnesota Home Help Navigation Program.

3. Fighting to protect healthcare for our community: campaigning to protect Medicaid and Telehealth.

4. Supporting and building community through online support groups, workshops on grief, author Q&A’s, modified movement classes and caregiving workshops.

5. Making ME a household name in the press: dozens of press hits in Mother Jones, Medpage Today, STAT News, Vox and more.

6. Providing clinical support at the Mayo Clinic by developing and implementing a Pacing Narrative Study. The first paper using data from our Pacing Narrative Survey was published recently!

7. Educating medical school students by authoring a textbook chapter on ME/CFS.

8. Featuring the amazing artists in our community through the Writer’s Guild partnership (won an award at the WGI gala!), Pillow Writers, artists salons, and our Severe ME Artists Project.

9. Putting ME into the medical and university spotlight by leading workshops at Quinnipiac University.

10. Creating guides for our community that help individuals in hospital settings, prepare for disability home visits and so much more.

Together as a community, we will continue to be sources of light for each other. ’s lantern burns bright because of you. You are at the center of everything we do.

11/20/2025

Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: https://ow.ly/3IcV50XlbZh

All caregivers are welcome! Whether you are new to caregiving or have been caregiving for years, there is something for you. While this workshop will address help for chronic illness caregivers who care for children, teen, and adult children, it will also be useful for all caregivers.

We will provide a safe and supportive space for caregivers to come together, share experiences, and learn practical strategies for navigating the unique challenges of caring for children, adult children, and teens with ME/CFS, Long COVID, and other diseases.

Denise Lopez-Majano is an volunteer who facilitates the Caregiving Support Group. She is longtime ME advocate and caregiver for her two sons, who got sick when they were 12 and nearly 15 years old more than 20 years ago. We appreciate her sharing her wisdom and experience!

11/19/2025

Important update and call to action: Congress has extended Telehealth until January 31,2026 as part of a deal to end the government shutdown.

This is NOT a permanent solution. Join in putting pressure on Congress to make Telehealth for Medicare permanent!

Call your Member now using our call script, and tell Congress to stop messing around with your healthcare! https://www.meaction.net/telehealth

Keep calling, keep putting pressure. Telehealth is a bi-partisan issue that can be made permanent with the right persistent communication with our elected officials.

Address

Princeton, NJ
08540

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm
Saturday	12pm - 4pm
Sunday	12pm - 7pm

Website

http://MEAction.net/, https://linktr.ee/meactnet

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