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meactnet.bsky.social
#MEAction Network
@meactnet.bsky.social
5.7K followers 400 following 1K posts
A global network of people empowering one another to fight for equity for myalgic encephalomyelitis. Home of the #MillionsMissing linktr.ee/meactnet

#pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice
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meactnet.bsky.social
​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
(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)
November 26, 2025 at 6:24 PM
meactnet.bsky.social
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
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.
November 25, 2025 at 7:12 PM
meactnet.bsky.social
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
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
November 25, 2025 at 6:43 PM
meactnet.bsky.social
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.
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.
November 24, 2025 at 10:12 PM
meactnet.bsky.social
Clinical trials are under attack from the Trump administration.

@washingtonpost.com 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.

@allysonchiu.bsky.social
Screenshot of Washington Post article with title and subtitle: "Trump slashed spending 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." Underneath is a stock photo of a microscope. Text above screenshot: #MEAction’s Scientific Director responds to the JAMA paper discussed in Washington Post article.
November 21, 2025 at 7:13 PM
meactnet.bsky.social
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: ow.ly/3IcV50XlbZh

All caregivers welcome! New to caregiving or a veteran at it, there is something for you!

#caregiver
Information about upcoming workshop with photo of facilitator Denise Lopez-Majano (fair-skinned woman with medium-length graying hair wearing glasses and smiling). Text: New virtual workshop. Chronic Illness Caregiving for Youth, Teen, and Adult Children with Denise Lopez-Majano. Saturday November 22 3 pm ET
November 20, 2025 at 6:23 PM
meactnet.bsky.social
Call to action: Congress has extended Telehealth until January 31,2026.

This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.

Call now using our call script: www.meaction.net/telehealth

#Telehealth #PwME #MECFS #LongCovid
Text-based graphic in red and white. Simple graphics in each corner include bullhorn, Capitol building, mobile phone, and #MEAction logo. Text: Call Congress now! Make telehealth coverage permanent! We provide a call script to use!
November 19, 2025 at 9:27 PM
meactnet.bsky.social
As a community-centered & disability-led organization, #MEAction’s strength lies in the choices we make that shape programs long before launch. It is these decisions that allow us to continue to serve you as a light for this community.

Learn more:
www.meaction.net/post/inside-...
rectangle image with a lantern and a heart reflection. The words A Lantern Burning Bright in Minnesota at the top. #MEAction logo bottom right corner.
November 19, 2025 at 5:09 PM
meactnet.bsky.social
We have one that someone with severe ME can use to let someone know that even though they may not be able to whisper a thank you or even acknowledge the person, it is appreciated

"This spot can get lonely. When you come in and hand me my meds or refill my cup, it means the world to me..."
Background shows a bed in a darkened room with a lamp pointed at the bed to spotlight it. Text: This spot can get lonely. When you come in and hand me my meds or refill my cup, it means the world to me. I cannot always say it in the moment but thank you!
November 18, 2025 at 5:24 PM
meactnet.bsky.social
We have one for your favorite electrolyte maker/ cup filler/ hydration bringer. Let them know you appreciate the constant stream of beverages!
Several water bottles/cups in different colors and styles plus symbols for electrolytes against a white background with text in the middle: Thank you to my favorite electrolyte maker/ cup filler/ hydration bringer! I appreciate you!
November 18, 2025 at 5:24 PM
meactnet.bsky.social
I will share a few samples here but please feel free to save this link where you can find all images! drive.google.com/drive/folder...

Please note the champion caregiver has enough blank space that you can add a name to it on your device to send a personalized "award."

#Caregiver #CareWorker
Trophy with stars around it. Text: Champion Caregiver Award!
November 18, 2025 at 5:24 PM
meactnet.bsky.social
We also created a couple that work to send to a friend who maybe does not have a caregiver in their life or where that situation is complicated. Just to remind them that are valued and loved!

(Psst..we might have more coming your way for your fellow #pwME/ #Spoonies- stay tuned!)
Very simple cream background with a vase with one flower in it. Text: You are loved always!
November 18, 2025 at 5:24 PM
meactnet.bsky.social
Do you have a family caregiver in your life? Want to tell them thanks and show your appreciation? We created some images you are welcome to save and share throughout the year with the caregivers in your life! It can be for your caregiver or for a friend who is caregiving.

#FamilyCaregiver #pwME
Simple graphic with white background and red pops of color in the corners. Text: Thank you caregivers! Help yourself to these thank you messages to the caregiver in your life! We included a couple that also work for someone missing a caregiver in their life!
November 18, 2025 at 5:24 PM
meactnet.bsky.social
Join us TOMORROW - Nov. 16 at 3 pm ET for a workshop for caregivers: Top 10 Lessons from 20 Years of Caregiving by Kim Moy. ow.ly/gtAP50XlbZb

Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22.

#PwME #UnitedForME #Caregiver #ChronicIllness
Graphic with workshop details and a photo of Kim Moy (smiling Asian American woman with light-medium skin tone and graying hair, wearing a blue top and colorful scarf standing outside.) Text: Join Us Live Workshop Top 10 lessons from 20 years of caregiving with Kim Moy. Sunday November 16 3 pm ET Get your tickets now. (QR CODE)
November 15, 2025 at 7:55 PM
meactnet.bsky.social
The Sick Times wrote an article about how community and organizations fight to advocate for #longCovid and #MECFS, even in very sick bodies.

#MEAction is featured throughout the article for our medical education work and direct action.

@thesicktimes.org
Photo from article of people outside at #MillionsMissing demonstration taken by Robb Hill. The Sick Times logo above and text below: Read about #MEAction's Activism in Sick Times article. Sick Times Writes about community activism for ME & Long COVID
November 14, 2025 at 7:07 PM
meactnet.bsky.social
Sign up for these 2 workshops for #caregivers.

1. Nov. 16 @ 3 pm ET: 10 Lessons from 20 Years of Caregiving — Kim Moya
ow.ly/gtAP50XlbZb

2. Nov. 22 @ 3 pm ET: Chronic Illness Caregiving for Youth, Teen, & Adult Children — Denise Lopez-Majano ow.ly/3IcV50XlbZh

#pwME #ChronicIllness
Graphic about two upcoming Caregiving webinars with MEAction. Photo of Kim Moy (smiling Asian American woman with light-medium skin tone and graying hair, wearing a green sweater and multicolor scarf) and Denise Lopez-Majano (fair skinned, woman wearing glasses with graying, medium length hair wearing a light blue fleece top). Under each photo is their name and the name of the webinar along with dates Nov 16 and Nov. 22 both at 3 pm ET.
November 10, 2025 at 6:23 PM
meactnet.bsky.social
Hello my precious community! I have something beautiful to share with you today.

Please sit back and join me as I read from The Pillow Writers Anthology. Thank you Kathrin H for today's poem.

Order your copy today! Print & ebook.

a.co/d/aP1gmXT

#pwME #MyalgicEncephalomyelitis #LongCovid #MECFS
November 8, 2025 at 6:52 PM
meactnet.bsky.social
This year has been heavy—political whiplash, uncertainty, and real harm for our community. #MEAction is here, advocating on the ground.

Remember, HOPE is a sweet rebellion.

#MEAction is a lantern in the darkness.

We can only continue our work with your support. www.meaction.net/lantern-in-t...
lantern against a dark background with #MEAction logo and text underneath: be a lantern in the darkness
November 7, 2025 at 5:00 PM
meactnet.bsky.social
We are excited and ready for day 2 of @icancmeresearch.bsky.social!

#MEAction’s Scientific Director, Jaime Seltzer @exceedhergrasp1.bsky.social, is speaking soon!

#ICanCME2025 #pwME #MECFS
November 5, 2025 at 5:58 PM
meactnet.bsky.social
Love seeing our Still Sick Still Fighting showing up at the @icancmeresearch.bsky.social conference!

Thank you, @sabrinapoirier.bsky.social!

#ICanCME2025 #StillSickStillFighting
#MyalgicEncephalomyelitis #MECFS #LongCovid

Find tees here: www.bonfire.com/store/meacti...
A photo of a laptop screen showing Sabrina (light-skinned person with long dark hair wearing glasses and a red tee) speaking. Lower left screen shows text: Sabrina Poirier (she/her)
November 4, 2025 at 7:16 PM
meactnet.bsky.social
Webinar tickets are pay-what-you-can (starting at $1) to help cover event costs and enable us to host more future events. If you’re unable to contribute, fill out this form to receive a free ticket:
ow.ly/vtuu50Xm59c

#FamilyCaregiver #PwME #ChronicIllness #MECFS #LongCovid
November 4, 2025 at 5:27 PM
meactnet.bsky.social
November is National Family Caregiver Appreciation Month.

#MEAction is bringing you two powerful webinars with Kim Moy and Denise Lopez-Majano to honor and support caregivers in our community. Caregiver Wisdom and #MEAction will be sharing more resources throughout the month as well!

#caregiver
Graphic about two upcoming Caregiving webinars with MEAction. Photo of Kim Moy (smiling Asian American woman with light-medium skin tone and graying hair, wearing a green sweater and multicolor scarf) and Denise Lopez-Majano (fair skinned, woman wearing glasses with graying, medium length hair wearing a light blue fleece top). Under each photo is their name and the name of the webinar along with dates Nov 16 and Nov. 22 both at 3 pm ET.
November 4, 2025 at 5:27 PM
meactnet.bsky.social
Please join us is sending a big thank you & good luck to Danny Smith!

Danny is running the Philadelphia Marathon on November 23rd to raise money and awareness for ME/CFS and Long COVID. Danny has kindly chosen #MEAction to receive funds.

meaction.funraise.org/fundraiser/d...

#MECFS #LongCovid
Graphic with yellow and white background with a screenshot from the fundraising page by Danny that shows a photo of a runner and a donation bar. Text above: A huge thank you to Danny Smith for running the Philadelphia Marathon on November 23rd and raising funds for #MEAction! Let’s cheer Danny on! “ME/CFS and Long COVID have touched nearly every corner of my life: my best friend, immediate family members, coworkers and more.” Danny Smith
November 4, 2025 at 12:07 AM
meactnet.bsky.social
November is National Family Caregivers Month. #MEAction is bringing you 2 powerful webinars! We will also be sharing social posts & resources focusing on caregiving.

Webinar 1: Nov. 16 at 3 pm ET ow.ly/aN5G50XlbZc

Webinar 2: Nov. 22 at 3 pm ET ow.ly/JZis50XlbZg

#Caregiver #PwME #MECFS
An image of pair of hands held in the shape of a heart against the sun. Text in white against a red background:: Join us this November as we focus on the caregivers in our community! November is Family Caregivers Month. #MEAction will be bringing you two powerful webinars focusing on caregiving. We will also be sharing a series of social posts focusing on caregiving in collaboration with Caregiver Wisdom
November 1, 2025 at 4:16 PM
meactnet.bsky.social
Don't let the grim reaper steal your health insurance!

CALL your Congress Member and tell them to fight back against Medicaid cuts + ACA Premium increases.
Congress is tackling these very issues during the govt shut-down - they need to hear from YOU!
See our call script 👇.
gray/foggy square image, with a white woman in a blue sweater kneeling next to a cloaked figure with an axe. The words, tell congress: don't chop my health insurance. meaction logo in bottom right corner.
October 31, 2025 at 6:33 PM