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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
#MEAction Network @meactnet.bsky.social · 4d
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
Reposted by #MEAction Network
solveme.bsky.social
For National Family #Caregivers Month, we're partnering with Kantor & Kantor, LLP to create practical tools for caregiving in complex illness.

This week’s focus: the Employee Retirement Income Security Act (ERISA).

Download our one-pager here:
solvecfs.org/wp-content/u...

#UnitedForME
A multicolored one-page document, "Supporting Loved Ones Through a Disability Insurance Claim ERISA 101 for ME/CFS Caregivers," contains legal tips for handling insurance disability claims, co-branded with logos from Solve M.E. and Kantor & Kantor, LLP.
November 11, 2025 at 6:50 PM
Reposted by #MEAction Network
marushka-t.bsky.social
Some good advice on how to effectively support family #caregivers of people with ME. Caregivers are often the unsung heroes of our lives, and may perform their acts of care at great cost to themselves. 💙 #disability #MECFS #chronicillness

www.caregiverwisdom.net/post/support...
November 11, 2025 at 6:46 PM
meactnet.bsky.social
Have you wondered how you can help a caregiver in your life?

If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?

Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...

#Caregiver
Supporting Family Caregivers: 25 Heartwarming Ways You Can Make a Difference
Have you wondered how you can help a caregiver in your life - specific, actionable ways you can help? Here are 25 thoughtful ways you can provide meaningful support to family caregivers.
www.caregiverwisdom.net
November 11, 2025 at 5:49 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
Reposted by #MEAction Network
massmecfs.bsky.social
Watch now! The recording is available for our 2025 Annual Meeting featuring MIT Research Scientist, Beth Pollack.
www.youtube.com/watch?v=15WR...

#massmecfs #mecfsreseach #longcovidreseach #chronicillnessresearch #invisibleillnessresearch
November 7, 2025 at 4:12 PM
Reposted by #MEAction Network
cgatist.bsky.social
Interested in ME/CFS research?
Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social?
Then apply for a *funded* Future Medicine PhD Fellowship.
See: www.findaphd.com/phds/project...
Please contact us to discuss before applying.
Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh on FindAPhD.com
PhD Project - Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh, listed on FindAPhD.com
www.findaphd.com
October 28, 2025 at 8:27 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
Reposted by #MEAction Network
wilhelminaj.bsky.social
If you didn’t watch the third and last day of the #ICanCME2025 Conference for ME/CFS, here’s the live tweeting stream by @spichaksimon.bsky.social. Thanks, Simon, and thanks to @icancmeresearch.bsky.social for such a brilliant conference.
spichaksimon.bsky.social Simon Spichak @spichaksimon.bsky.social · 5d
Thread for Day 3 of the @icancmeresearch.bsky.social conference. My attempt at simultaneously sharing on X and Bsky.
November 6, 2025 at 10:25 PM
Reposted by #MEAction Network
exceedhergrasp1.bsky.social
At the #ICanCME2025 conference today!

Sabrina Poirier & Maeghan Taverner's intros blew me away.

~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost

This is what a conference designed by people with lived experience looks like 🧪
November 4, 2025 at 6:23 PM
Reposted by #MEAction Network
crookedneighbor.bsky.social
@Medical professionals and researchers:

The American Society for Parenteral and Enteral Nutrition is seeking topic suggestions for Malnutrition Awareness Week 2026. Would be great to see something on malnutrition in severe ME.

@meactnet.bsky.social @swastrosarah.bsky.social @janetdafoe.bsky.social
November 6, 2025 at 8:37 PM
meactnet.bsky.social
A new analysis shows that no evidence exists for using graded exercise therapy for #MECFS - an issue that has come to the forefront again with #LongCovid research, reports @medscape.com.

Read the full Medscape article here: wb.md/4oWpDRk
No Evidence Supports Using Graded Exercise for ME/CFS
Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’
wb.md
November 6, 2025 at 7:42 PM
Reposted by #MEAction Network
sabrinapoirier.bsky.social
Today is the last day of the #ICanCME2025 Conference.

We will be talking research design today!

Common mistakes, gaps in knowledge, tools we need to create, opportunities for increased diversity and inclusion, hoe to increase accessibility in research, why patient partnership matters, and more!
November 6, 2025 at 1:04 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
Reposted by #MEAction Network
marushka-t.bsky.social
Thank you to all the caregivers. 💙

Depending on where we live, social and medical supports for PwME can be hard to get, especially for those who are homebound or bedbound. Some live in complete isolation. The care given to PwME is life-changing.

#disability #healthcare #MillionsMissing #MECFS
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · 7d
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 5:41 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
Joining day 1 of the ICanCME Canadian Collaborative Conference on Myalgic Encephalomyelitis (ME).

Huge shout-out for the respect for lived experience! Wonderful start!

#ICanCME2025

#NothingAboutUsWithoutUs

@icancmeresearch.bsky.social, applause to planning team!
November 4, 2025 at 6:18 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
Reposted by #MEAction Network
sabrinapoirier.bsky.social
#ICanCME2025 is happening this week!

This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.

And please be patient with us this week if we run into any issues. 🤞💙
November 3, 2025 at 3:51 PM
Reposted by #MEAction Network
tomkindlon.bsky.social
#MEAction "2nd Annual RECOVER-TLC Research Workshop: A summary"

www.meaction.net/post/2nd-ann...

Discussion of the National Institutes of Health (NIH) 2025 RECOVER-TLC Workshop

A recording of the full workshop is available online:
www.youtube.com/playlist?lis...

#LongCovid @meactnet.bsky.social
2nd Annual RECOVER-TLC Research Workshop : A summary
Summary review of the recent RECOVER TLC Workshop
www.meaction.net
November 2, 2025 at 2:39 PM
Reposted by #MEAction Network
meactmaryland.bsky.social
Today is the day after Halloween & this pumpkin is not scary
...
Not like Medicaid cuts are scary for millions of Americans - they're life and death.

#savemedicaid #aca @meactnet.bsky.social
ALT-TEXT: smallish Halloween pumpkin sort of adorably decorated (with stick on decorations) black ears, black wings, big huge owl eyes, yellow beak, huge orange flippers
November 2, 2025 at 2:36 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
Reposted by #MEAction Network
exceedhergrasp1.bsky.social
They say you don't know what you've got til it's gone. If you don't want to envision a future that doesn't #SaveMedicaid and the #ACA, join us in contacting your Congressperson. Tell them only they can save American Healthcare! @meactnet.bsky.social
Jaime wearing all black stands before a misty spooky graveyard with trees in the background. Beside her is a gravestone that reads, "HERE LIES MEDICAID, 1965-2025" and above her it reads in large, white spooky letters, "DON'T MOURN MEDICAID! ACT, BEFORE IT'S TOO LATE!"
October 31, 2025 at 8:11 PM
Reposted by #MEAction Network
meactmaryland.bsky.social
TeamBlueZoo's cutest member protests for Healthcare reform

Things are so scary, that no dressing up was required
Because the facts are the facts & they look dire
Affordable health care (ACA) has expired
#SaveMedicaid #ADA @meactnet.bsky.social
Deja Blue, a light brown service dog sits in the grass in front of a sign PAWS OFF OUR HEALTHCARE! PAWS OFF OUR RIGHTS! PAWS OFF OUR FREEDOM! #NOKINGS #meactmaryland @meactmaryland.bsky.social #TEAMBLUEZOO sign with pawprints reading: PAWS OFF OUR HEALTHCARE! PAWS OFF OUR RIGHTS! PAWS OFF OUR FREEDOM! #NOKINGS #meactmaryland @meactmaryland.bsky.social #TEAMBLUEZOO
October 31, 2025 at 7:58 PM