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meactnet.bsky.social
#MEAction Network
@meactnet.bsky.social
5.6K followers 390 following 990 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
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
meactnet.bsky.social
This is a very SCARY time! We are people with ME/CFS & Long COVID that stand against the Medicaid cuts + ACA Premium increases. $1trillion in Medicaid cuts will harm millions. ACA premium hikes will steal affordable healthcare from tens of millions.

Contact Congress: www.meaction.net/medicaid

#ACA
man wears a long gray wig and beard and holds a sign that says: People with ME/CFS feel this old every day
October 31, 2025 at 3:41 PM
meactnet.bsky.social
Ben also shares a photo with his notice that his healthcare marketplace plan premium subsidies are expiring - one of this season's true horror stories!

Millions of people will get kicked off of Medicaid.

ACA Health insurance premiums are expected to double if the tax credits expire. #ACA
White man with brown hair and beard wearing glasses looks serious as he hold up a paper notifying him that his healthcare marketplace plan premium subsidies are expiring.
October 31, 2025 at 12:52 AM
meactnet.bsky.social
Creepy baby me says....Congress stop playing tricks with my healthcare!

#MEAction's Ben HsuBorger shares his self-proclaimed creepy baby photo to help spread the word that right now is a scary time!

Contact Congress today! Tell them we do not accept this HealthSCARE! www.meaction.net/medicaid
a baby looking mischievous with a creepy cemetery background. Text: Creepy Baby ME says...Congress stop playing tricks with my healthcare.
October 31, 2025 at 12:52 AM
meactnet.bsky.social
It’s Halloween-time, but we shouldn’t actually be living in a horror movie.

Congress is fighting over healthcare cuts that will make access to medical care a nightmare for working families, small businesses & people with disabilities.

Call Congress: www.meaction.net/medicaid

#SaveMedicaid #ACA
October 30, 2025 at 6:45 PM
meactnet.bsky.social
This is a blood-sucking nightmare. But we can get out of it together. Our government needs to hear from us! Save #ACA. #SaveMedicaid. @MEActNet

Thanks to our executive director, Laurie Jones, & her daughters for joining in!

Contact Congress: www.meaction.net/medicaid

#pwME #Disability #LongCovid
Two photos showing a brown-haired white woman and a blonde baby and brown-haired little girl dressed as vampires. Text: Scary Times. Save Medicaid Save ACA
October 29, 2025 at 8:53 PM
meactnet.bsky.social
Let’s be clear. If the federal government doesn't make changes to health care during this shutdown, then a lot of Americans WILL lose access to our healthcare as we know it.

We are joining in coalition with other orgs aimed at protecting Medicaid in FLIPPING the Narrative. We need your help!
A character in a costume mask and black cloak is at top of graphic with black background. Text underneath: Don’t Let This Season BE A Horror Story. SAVE ACA! Save MEDICAID!
October 29, 2025 at 6:23 PM
meactnet.bsky.social
We just finished the amazing workshop with Marisa Renee Lee focusing on grief & chronic illness. At least 7 countries were represented & we had an amazing time together.

We touched on the importance of finding joy & taking care of ourselves in the workshop so I thought I would add this reminder!
Graphic in soft colors with cream background. Text in center: Chronic Illness self care How will you practice self care today? Surrounding that text are graphics that match the suggestions listed under them. Starting in top left corner and going clockwise: Journal, say no without guilt, Remember you are worthy just as you are, meditate, wear your comfiest clothes, visit an art gallery from your bed, take 3 deep breaths, listen to something you enjoy, create art, snuggle up with a good book
October 28, 2025 at 8:40 PM
meactnet.bsky.social
Join us tomorrow- Oct. 28th at 3 pm ET for a virtual workshop! Get your ticket today. www.meaction.net/event-detail...

Grief and complex chronic illness go hand in hand. We are excited to have Marisa Renee Lee bring her knowledge to our community.

#pwME #Grief #MECFS #LongCovid #ChronicIllness
October 27, 2025 at 3:40 PM
meactnet.bsky.social
Sometimes we all need a reminder that we are kicking ass! www.bonfire.com/store/meacti...

Maybe we do not feel very kickass when we are just trying to survive but we know that takes unimaginable strength.

Thank you to @hospmom.bsky.social for this design!

#pwME #MECFS #Spoonie
Photo of Jess (white woman with long hair wearing a black tee that says "Kicking Ass Taking Naps" and a black skirt stands with a cane beside a mobility scooter looking badass. Text: kicking Ass taking naps. #MEAction We all need to remember our power! Check out all the great items with this new design! Order now!
October 23, 2025 at 1:38 AM
meactnet.bsky.social
Action Alert!

This Halloween is scarier than ever. If the federal government doesn't make changes to health care, then a lot of Americans WILL lose access to our healthcare as we know it

This is grim - but it doesn’t have to stay that way. Join us & fight back. ow.ly/RWVa50XglPK

#pwME #Medicaid
square image with black images of bats, spiders, cats, ghosts and house. The words, Let's use spooky season to advocate for Medicaid and the ACA. Yellowish button, with the words join our social media campaign
October 22, 2025 at 4:06 PM
meactnet.bsky.social
Grief and complex chronic illness often go hand in hand. Join us on October 28th at 12 pm PT/ 3 pm ET/ 7 pm GMT for a virtual workshop with Marisa Renee Lee focusing on this important topic. www.meaction.net/event-detail...

#pwME #grief #ChronicIllness #MECFS #Spoonie
Graphic with photo of author Marisa Renee Lee (a Black woman with a great big smile looking at the camera) and her book (title Grief is Love with purple/blue/pink/gold floral swirls) Text: Dealing with Grief and Chronic Illness Workshop Tuesday October 28th 3 pm ET Get your ticket today! Marisa Renee Lee author of Grief is Love.
October 22, 2025 at 1:51 AM
meactnet.bsky.social
We know a lot of people are wanting to participate in actions or protests right now.

#MEAction has a Protest Guide for those with ME or other energy-limiting chronic disease to help!

Find it here: www.meaction.net/_files/ugd/b...

#pwME #MECFS #ChronicIllness #protest #spoonie
October 18, 2025 at 3:51 PM
meactnet.bsky.social
After the Protest

- Set aside recovery time. - more than you think you might need. Aggressive rest time!

- Share protest pictures.

- Share lessons learned - what helped and what did not.

#MEAction Protest Guide: bit.ly/MEAProtestGuide
After the Protest Set aside recovery time. - more than you think you might need. Share protest pictures. Share lessons learned - what helped and what did not. Sketch of a person lying down wearing ear defenders and eye mask. #MEAction Protest Guide bit.ly/MEAProtestGuide
October 16, 2025 at 4:49 PM
meactnet.bsky.social
Day of Protest
- Scope out the landscape.
- Prioritize self care & maintain boundaries.
- Rest and Pace. Hydrate. Medicate as needed.
- Communicate with protest buddies. Be honest about how you are feeling.
- Take pictures of the protest or ask your protest buddies to take pictures
Small photo from DC protest of protestors lying on the sidewalk holding signs in front of the White House. Underneath is text: Day of Protest Scope out the landscape. Prioritize self care and maintain boundaries. Rest and Pace. Hydrate and take medicine as needed. Leave when you need to. Communicate with protest buddies. Be honest about how you are feeling. Take pictures of the protest or ask your protest buddies to take pictures
October 16, 2025 at 4:49 PM
meactnet.bsky.social
Please see our guide for the full list of before protest actions! www.meaction.net/_files/ugd/b...

- Ask for help!
- Learn from organizers & ask questions
- Use mobility aids
- Get a protest buddy
- Prepare 2-3 contacts
- Pace out all these activities.

#Disability #MyalgicEncephalomyelitis
Text graphic with list of what to do before the protest. Ask other able-bodied and disabled friends, allies, and caretakers to join with you in planning to join a protest safely Learn what you can about the protest plan, directly from the organizer’s event page and communication Direct important questions or needs to the protest organizer(s) ahead of time. Secure a wheelchair/mobility aid and other needed aids, if you do not already have them .Get a protest buddy(ies). Prepare 2-3 contacts in case of emergency If you can, publicize the protest through social media and your networks As best as you can, pace out all these activities.
October 16, 2025 at 4:49 PM