#MEAction's
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wilhelminaj.bsky.social
Great thread from #MEAction’s scientific director, @exceedhergrasp1.bsky.social , on today’s NIH ME/CFS advocacy call.
exceedhergrasp1.bsky.social It's ME(Jaime) @exceedhergrasp1.bsky.social · Jan 14
On the #NIH advocacy call right now.
Koroshetz on, discussing the new Vernon et al. paper distinguishing between #pwME post-COVID versus those we cannot PROVE had COVID.
~ 0.9% in those we can't prove had COVID
vs
~4.5% in those who were in the post-COVID group
met dx criteria for #MECFS. 🧪🧵
January 14, 2025 at 8:24 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
tomkindlon.bsky.social
🧵
"Advice for Caregivers from Caregivers – Who are Sick Themselves" from @meactnet.bsky.social (5 pages)

www.meaction.net/_files/ugd/b...

#MEAction Caregivers' Support Group www.facebook.com/groups/meact...

#Caregiver #Caregivers #Caring #MEcfs #CFS #PwME

1/
#MEAction logo Advice for Caregivers from Caregivers – Who are Sick Themselves #MEAction’s advocate, Denise Lopez-Majano, posed questions to caregivers, many of whom live with myalgic encephalomyelitis (ME) themselves, to collect their wisdom, advice and experience. Denise is a caregiver for her two adult sons with severe ME and has been facilitating #MEAction’s caregiver calls for several years. Join #MEAction’s caregivers group here.
February 18, 2026 at 4:18 PM
exceedhergrasp1.bsky.social
We're eager to get to work!

You can donate directly to support the study at #MEAction's fundraiser here:

millionsmissing.funraise.org/fundraiser/m...
#MillionsMissing 2026
millionsmissing.funraise.org
April 28, 2026 at 1:49 PM
meactnet.bsky.social
A message from MEAction's Jaime Seltzer is included. @exceedhergrasp1.bsky.social

#pwME #NewYear #MECFS #LongCovid
December 31, 2024 at 3:15 PM
juliametraux.bsky.social
I'd look on MEAction's site.
September 16, 2026 at 12:35 AM
exceedhergrasp1.bsky.social
Remember that if you are experiencing disproportionate 'payback' after exerting yourself after COVID, stop, rest, and pace.

You can find #MEAction's three pacing guides here: for adults, for kids and their families, and for medical providers: www.meaction.net/resource/pac...
Pacing and Management Guides
Find #MEAction's original Pacing Guide and Pediatric Pacing and Management Guide for ME/CFS and Long COVID, with translations.
www.meaction.net
March 2, 2024 at 12:58 AM
midcatecrisis.bsky.social
If you are experiencing PEM, start pacing immediately.

Guideline by ME Action here: www.meaction.net/resource/pac...
Pacing and Management Guides
Find #MEAction's original Pacing Guide and Pediatric Pacing and Management Guide for ME/CFS and Long COVID, with translations.
www.meaction.net
July 19, 2024 at 11:42 PM
meactnet.bsky.social
A message from #MEAction’s Executive Director Laurie Jones after the passing of recent legislation:
mailchi.mp/meaction/mea...

#PwME #MyalgicEncephalomyelitis #MECFS #longCovid #Disability
Simple graphic with red background and white lettering. #MEAction logo is at the bottom. Text in the center: A message from #MEAction’s Executive Director Laurie Jones after the passing of recent legislation.
July 9, 2025 at 6:23 PM
exceedhergrasp1.bsky.social
If you haven't signed yet to support funding for the ME/CFS Research Roadmap, I'd encourage you to do so while you're in a civic frame of mind! Read on for more info or sign right now:

US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
#MEAction's Petittion to the NIH to Fund the ME/CFS Roadmap now has OVER 5K SIGNERS! Add your voice. Sign now! MEAction's white logo is in the bottom, right-hand corner.
November 4, 2024 at 5:53 PM
exceedhergrasp1.bsky.social
Not only do kids get infection-associated chronic illnesses, there's a spike in diagnoses of #MECFS ages 10-19.

Two vital resources:

#MEAction Pediatric Pacing and Management Guide, found here: www.meaction.net/resource/pac...

Pediatric Primer for #MECFS: pubmed.ncbi.nlm.nih.gov/28674681/
June 21, 2025 at 1:15 AM
exceedhergrasp1.bsky.social
Great work here making sense of a very complicated landscape from @betsyladyzhets.bsky.social

HT #MEAction's own Ben HsuBorger, me, and a stunning array of other incredible #LongCOVID, #IACC, and #MECFS experts.
November 26, 2024 at 6:34 PM
meactnet.bsky.social
Are you ready for some community care? Remember, love is powerful! We are stronger together. #MEaction’s Share The Love project is coming up! The deadline to turn in your submission is Feb. 7. Details and link to submit: docs.google.com/document/d/1...

#pwME #MECFS #longCovid
“Love is powerful! Join in #MEaction’s share the love project” #MEAction in a heart logo under text. "Deadline is Feb. 7 to participate."
February 5, 2025 at 11:42 PM
meactnet.bsky.social
See thread below as #MEAction's Scientific Director, Jaime Seltzer, shares from the NIH RECOVER TLC meeting. #pwME #LongCovid #MECFS #MyalgicEncephalomyelitis #RecoverTLC
exceedhergrasp1.bsky.social It's ME(Jaime) @exceedhergrasp1.bsky.social · Sep 23
At RECOVER TLC, a meeting hosted at NIH to discuss treatment trials for Long COVID. I'll be on a panel later to discuss how what we know about other infection- associated chronic illnesses in trials for Long COVID.
Jaime Seltzer, a white woman with curly brown hair wears gray glasses, a light blue button down and black blazer. You can see her NIH name tag just out of frame Jaime and Angela side by side in the conference room at NIH. Angela has darker hair and is wearing a cream top. Both are wearing black face masks
September 23, 2024 at 2:11 PM
meactnet.bsky.social
Jaime Seltzer, #MEAction's Scientific Director, was interviewed to create this piece on PEM in ME/CFS with @scishow.bsky.social, a popular YouTube channel that explains complex science/medical concepts to laypersons. Check it out here: youtu.be/wxSwYUennBA?...

#pwME #MECFS #LongCovid
Laptop computer showing a still image of the SciShow video on ME/CFS. Stefan Chin (medium skin tone with short hair, wearing glasses a button down short-sleeve shirt) speaks into the camera with a colorful background behind him. Text on graphic next to the laptop: "New SciShow video on ME/CFS! Jaime Seltzer, #MEAction's Scientific Director, consulted with SciShow for this video! Check it out on SciShow's YouTube page!" The #MEAction logo is in the bottom corner.
March 4, 2025 at 9:23 PM
exceedhergrasp1.bsky.social
Hey, y'all: some interviews I gave this month as we approached #MillionsMissing:

1) Dave Tuller interview: www.youtube.com/watch?v=gYFG...
Jaime Seltzer, #MEAction's scientific director, on where we are now.
YouTube video by David M Tuller
www.youtube.com
May 18, 2025 at 1:32 PM
exceedhergrasp1.bsky.social
New interview with David Tuller on the state of #MECFS and #LongCOVID and the impact of the new administration on the research landscape as a whole. 🧪

www.youtube.com/watch?v=gYFG...
Jaime Seltzer, #MEAction's scientific director, on where we are now.
YouTube video by David M Tuller
www.youtube.com
May 2, 2025 at 12:16 PM
exceedhergrasp1.bsky.social
So sorry to hear this! I knew Judith through social media, loved her art and her posts. She was one of the folks who participated in MEAction's Severe ME Artist's project. Bright, warm, & brilliant, she stood out. She will be missed.
December 12, 2024 at 2:13 PM
exceedhergrasp1.bsky.social
3. The Pacing & Management Guides (original, me; peds + @longcovidfam.bsky.social; clinical = me + @patientled.bsky.social)

Activity management guides for folks with PEM, including those with #MECFS & #LongCOVID🧵

www.meaction.net/resource/pac...
Pacing and Management Guides
Find #MEAction's original Pacing Guide and Pediatric Pacing and Management Guide for ME/CFS and Long COVID, with translations.
www.meaction.net
March 30, 2025 at 9:01 PM
exceedhergrasp1.bsky.social
Some resources for #LongCOVIDAwarenessDay, a thread 🧵

1. The Pacing Guides, for activity management; includes guides for adults, peds, and a cited version for clinicians. Latter two created in conjunction w @longcovidfam.bsky.social and @patientled.bsky.social.

www.meaction.net/resource/pac...
Pacing and Management Guides
Find #MEAction's original Pacing Guide and Pediatric Pacing and Management Guide for ME/CFS and Long COVID, with translations.
www.meaction.net
March 15, 2025 at 3:52 PM
meactnet.bsky.social
Starting soon! Please note it will be recorded for those unable to attend!

MEAction's Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social is attending as she has been the previous two days as well.

Take care all!

#MyalgicEncephalomyelitis #MECFS
openmedf.bsky.social Open Medicine Foundation (OMF) @openmedf.bsky.social · 17d
From Dr. Ronald W. Davis: "I'm excited to announce our lineup of speakers for our upcoming Community Symposium on September 11! It will be recorded for those who cannot attend."

Register here: https://ow.ly/EtaX50ZLXkS
Schedule for Stanford Medicine's ME/CFS Molecular Basis Symposium on September 11, 2026, listing speakers and topics from 8:00 am to 4:30 pm.
September 11, 2026 at 2:44 PM
bhanlon15.bsky.social
#MEAction: 'Our pilot program offers free support applying for in-home help for Minnesotans with Long COVID, ME/CFS, and energy limiting illness'

'We’re excited to announce the official launch of the Minnesota Home Help Navigation Program, a new pilot program created..'

mailchi.mp/meaction/off...
Official Launch of #MEAction’s Minnesota Home Help Navigation
mailchi.mp
September 3, 2025 at 4:06 PM
meactnet.bsky.social
As we embark on the new year, we are excited to share updates about #MEAction’s advocacy projects & community programs. We know the year ahead is looking daunting but we will come together as a community to tackle the obstacles ahead.

Please see our update here: www.meaction.net/2025/01/23/t...
The Year Ahead
As we embark on the new year, we are excited to share updates about #MEAction’s advocacy projects and community programs with you!  While we focus on advancing support, research, and treatments for pe...
www.meaction.net
January 23, 2025 at 8:08 PM
meactnet.bsky.social
We are thrilled to introduce ##MEAction's newest staff member- Linda Pozen. Help us welcome Linda to the team!

More info: www.meartistsproject.com/post/new-sta...

Find out more information about the Minnesota Home Help Navigation Program: help.meaction.net

#LongCovid #Minnesota #pwME #disability
September 5, 2025 at 4:14 PM
meactnet.bsky.social
A wonderful list of speakers including #MEAction's Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social and our Scientific and Medical Advisory Board member Ashanti Daniel.

This is TOMORROW. Register now.

#pwME #MyalgicEncephalomyelitis #MECFS
rthm.bsky.social rthm_health @rthm.bsky.social · Nov 18
Join us for a webinar focused on Long COVID & IACC Care. As the landscape of clinical trials and treatments evolves, it’s crucial to understand what steps can be taken to enhance patient care.

📅 November 20
🕚 11:30 AM - 12:45 PM PST
⏳ 60 minutes + 15 mins for Q&A

Register Now: ow.ly/rogL50U6AAA
November 19, 2024 at 3:27 PM