#MEAction Network

Please do this action. So many people have these diseases and more to come.

Welcome to MEpedia

If you’re new to the #MECFS world I recommend bookmarking MEpedia.

It’s a great resource from @meactnet.bsky.social

Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.

Both #MyalgicEncephalomyelitis and #LongCovid have over 200 symptoms.

Each system in the body remains under attack, leading to unremitting physical agony and horrid #disabilty.

PLEASE sign the letter below to HHS. This is life and death for millions of us.

#DisabilitySky #pwME #pwLC

#pwME #LongCovid #Disability #MECFS #MyalgicEncephalomyelitis #MedicaidMatters #DisabilityRights #HealthEquity #DisabilityAdvocacy #Medicaid #SaveMedicaid #ProtectOurCare

Our campaign will also continue to work in a larger disability coalition that advocates to all decision-makers to define “medically frail” as broadly as possible to capture everyone whose health or function limits their ability to meet the new work requirement.

This petition is the first step in our year-long, multi-pronged #FreakinFrail campaign to protect our community’s access to Medicaid, mobilizing grassroots pressure at the federal and state levels.

Protect Medicaid for People with ME/CFS and Long COVID New Medicaid work rules will take effect at the end of 2026. Our care and support systems have long been rigged against disabled people, and these new paperwork rules will push even more sick people o...

Before States enforce the new Medicaid rules, HHS Secretary must issue guidance that will shape how states decide who counts as “medically frail.” Join us in demanding that people with ME/CFS and Long COVID are fully protected.
Sign the petition today:
actionnetwork.org/petitions/fr...

Congress has mandated that Medicaid recipients work 80 hours a month unless they can prove they are “medically frail,” or risk losing their Medicaid.
Attempting to meet an 80‑hour work requirement for most people with ME/CFS and Long COVID will only worsen their illness.

Beige background with the words "Freakin' Frail" in black and red. At the bottom, reads the sentence: "Protect Medicaid Access for People with ME/CFS and Long COVID."

New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care.
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.

SIGN THE LETTER: actionnetwork.org/petitions/fr...

blue background, with white snowflakes, trees, and dots around the sides. The words, Modified Movement Class. Friday, December 12th @ 11am PT/2pm PT/7pm GMT. MEaction and Nourish Yoga Logos at the bottom

In need if some pre-holiday, restorative self-care? Need it to be crafted specifically for #pwME?

We invite you to join an EXTREMELY modified movement class Dec. 12th at 11 am PT/2 pm ET/7 pm GMT.

Register: ow.ly/sHNr50XCebh

This virtual class is free to attend.

#spoonie

Evergreen bough on each side of green text on cream background. Text at top: Tips for the holidays for people with M.E. Text in center: Categories: Baking Communication Grief Home Care Infectious Illness Loneliness Traditions Travel

Feeling extra pressure to push yourself past your limit? Wondering how to explain those limits to those around you? Wanting to join in the seasonal joy but not sure how to make it a SAFE reality for you? We've got you! www.meaction.net/post/facets-...

#holidays #spoonie #pwME #spoonie

#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...

We’re discussing Grief, Stress, and Connection During the Holidays at the #MEAction Partner Caregiver support group meeting this Sunday, Dec. 7, from 12–1 p.m. PST / 3–4 p.m. EST / 8–9 p.m.

All caregivers are welcome to join

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

3X match of your gift today.

This group must keep going. They do vital work for a severely underserved and ill population.

Please donate today.

Redish stripped rectangle with a picture of hand loading a lantern above city lights. the words Giving Tuesday, Donate Now, be a lantern for all of us! All donations 3x matched. Meaction logo in top right corner

Today is Giving Tuesday! All Donations tripled!

We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do.

Donate now and be a lantern for all of us! meaction.net/donate

#MEAction has a 3X Matching opportunity for this #GivingTuesday - all donations will be TRIPLED today! www.meaction.net/donate

We simply cannot continue without your support. Help us continue to be a lantern in the darkness. We need your help to raise $150,000 by December 31st.

Thank you!

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)

(alt text: black square with gold frame. Gold glitter splash on the background. A gold box with the words: $15k – Unlock Instagram Live reading with writer’s guild writer $20k – Unlock release 20 books for community members: We Should All Be Birds (10) and Grief is Love (10). We will host a drawing to select winners (available for US, Canada, and UK) $35k – Unlock January workshop on Joy with Marisa Renee Lee $50k – Unlock release of 50 Visible Wearable Devices from Visible + 3 months membership. We will host a drawing to select winners (available for US, Canada, and UK) $75k – Unlock A Special Video and Community Resource $100k – Community gathering (virtual gathering)

​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: meaction.net/donate

6 shirts and 2 mugs all with a design that says Invisible illness Visible Love. It has a heart and an outline of a heart connecting the two phrases. The #MEaction logo is in the corner. Tops clockwise starting in top left corner: Gray sweatshirt, purple tee, red hoodie, white mug with red handle, mauve shirt, teal shirt, red shirt, and mug with black handle.

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

Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...

#InvisibleIllness

black square with gold frame. Gold glitter splash on the background. The words in cream, Light up a lantern. Image of a lantern in the center

Light Up A Lantern!

Everyone who gives $50+ to #MEAction 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.

And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate

Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...

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

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

I wrote recently about my experience with post-exertional malaise #PEM. Last year, I tried graded exercise therapy and it put me into a #PEMCrash that lasted for months. The physical therapist that “has worked with many #LongCovid #MECFS patients” had this mindset.

substack.com/home/post/p-...

Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...

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

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

The Sick Times investigated exercise-related trials registered in clinicaltrials.gov database, and found that “of 112 exercise-related trial registrations for Long COVID, only 21 mentioned PEM.”
(Analysis excludes trials for hospitalized patients or with acute infection.)

#MEAction’s Scientific Director, Jaime Seltzer:
“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."

A image showing the name of the publication at the top, The Sick Times, and then a subhead that reads: "Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise." And then a image of a woman bent over on her bed with her hair flowing onto the ground - everything is blue. At the bottom of the image, it reads: "In the Press. #MEAction Explains the Harms of GET for Long COVID.

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

An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.

Don’t miss this informative workshop today!

My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.

Caregivers - join in today!

This is today!

SIGN THE NIH LETTER | #MEAction We reached 7,000 signatures on our last letter. This time, our goal is 10,000. Please sign the letter today and share it with your friends and family.

#MEAction is currently campaigning for the NIH to fund the ME/CFS Research Roadmap, and we’ve secured a meeting with the NIH Director - read more here: www.meaction.net/research-roa...

#MEAction has fought to preserve research funding for ME/CFS and Long COVID: We mobilized the community to call on Congress to reinstate funding for Columbia Uni's ME/CFS Research Center. We sent a letter to the HHS Secretary, urging him to reinstate Long COVID Advisory Committee

Trump slashed spending on clinical trials. The toll is starting to become clear. Grants for 383 clinical trials were terminated and the funding disruptions affected more than 74,000 trial participants, according to new research.

Read the WaPo article here: bit.ly/4o3YQS3
(Read it here without a subscription: bit.ly/4o40Eux )