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Last week, PLRC members Gina and Michael participated in the #MEAction #MillionsMissing protest, calling on officials to safeguard essential supports like Medicaid, home care, research funding, and open science.

These systems—already fragile for many in our communities—are now at serious risk of collapse.

Visit @meaction.net for more information.

Gina who has long dark hair and wearing a black mask kneeling next to Michael who is wearing a blue mask, hat and sunglasses sitting in a wheel chair, both holding MEAction posters depicting an illustrated Statue of Liberty sinking to her crown in bright red liquid, holding the torch above an ocean of red next to the words " I am one of the Millions Missing. Save our Support Systems". S.O.S is boldly shown in red above her head.

Email update from #MEAction

"Millions Missing 2025: SOS - The Signal Was Sent!"

https://mailchi.mp/meaction/millionsmissing-2025-our-common-fight-is-what-matters-3574417

Lots more photos and videos - from the protest in DC, from folks who posted from home, and from other countries.

Also includes updates on meetings with congress, more signatures on the #MEAction letter to NIH, the fight to save Medicaid from budget cuts, and more.

@mecfs

#MEcfs #LongCovid #MillionsMissing #Medicaid #SaveMedicaid #DisabilitySOS

The signal was strong! #MEAction wants to send out a huge thanks to everyone who participated and continues to take action in response to this year’s #MillionsMissing campaign.

This year, our goal was to send an SOS signal to Congress and the world! Our support systems, our science, and our society needed saving…and we were not going down with the sinking ship, without a fight! This community answered the call. You showed up to make sure the SIGNAL was heard loud and clear.

This email is very long as it contains a lot of images. Take your time scrolling and come back later, if needed.

Story on yesterday's protest by #MEAction -

https://thesicktimes.org/2025/05/12/millions-missing-protest-at-the-capitol-demands-myalgic-encephalomyelitis-funding-social-support/?mc_cid=a2d59a5caf&mc_eid=6ce818828e

(This post is being modified)

PS. If you want to make a donation to an ME/CFS group (only if you can afford it!) then here are some links:

#MEAction
https://www.meactions.org/millionsmissing-2025-sos-fundraiser

Solve M.E.
https://solvecfs.org/donate

Bateman Horne Center
https://batemanhornecenter.org/donate/

Open Medicine Foundation
https://www.omf.ngo/

#MEcfs #MillionsMissing #WorldMEDay #MEAwarenessDay #Charity

Today is M.E. awareness day.

I was diagnosed with M.E. and P.O.T.S. in 2020. Prior to my diagnosis I was a seagoing worker in the arctic, an avid backcountry hiker and a busy musician in spite of both severe PTSD and fibromyalgia.

The summer of 2019 I got sick while working up north. It progressed to a terrible lung/strep infection. I was treated four times following that for walking pneumonia and became sick with another lung infection in late 2019 after travelling in Vietnam.

I kept trying to push through my exhaustion, returning to sea in spite of my symptoms. We live in a society that believes your value is directly tied to your work and productivity. It's a cruel and ableist lens to view human worth that way.

My body has never fully recovered. M.E. has been a rollercoaster of ups and downs and I feel like I've missed out on so much in the last five years of my life. I have tried to go back to some sort of career several times since then only to find myself in worse shape. These last few months of deep rest are the first time I've managed to find some balance with my illness. Sometimes I use a cane. Sometimes I don't. My mobility shifts like the wind. Please know that you aren't alone and many people with long covid may also be experiencing M.E.

It's easy to miss our existence. We just aren't there anymore, and it shouldn't have to stay this way.

#millionsMissing #meAction #meAwarenessDay #longCovid

A graphic that reads: I am one of the 2025 millions missing calling out an SOS.
Save our support systems. Save our science. Save our Society.

Okay, I think that's it! If you've made it all the way to the end of my thread, thanks so much for reading! 😁

I may be done posting but I'll continue to look for and boost other posts about World ME Day / ME Awareness Day / Millions Missing.

I'll end with a story by The Sick Times about the #MEAction Millions Missing protest at the capitol:

https://thesicktimes.org/2025/05/12/millions-missing-protest-at-the-capitol-demands-myalgic-encephalomyelitis-funding-social-support/

16/16

@mecfs @longcovid
@disability

#MEcfs #LongCovid #MillionsMissing #DisabilitySOS #MEAwarenessDay #WorldMEDay

I thought I had a longer list of actions!

The only other one I can find now is this, a call by #MEAction to sign their open letter to the NIH demanding they fund ME/CFS Resesarch Roadmap:

https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form

15/n

@mecfs @longcovid

#USpol #MEcfs #LongCovid #MillionsMissing #NIH #Research #FundMERoadmap

Demand NIH Fund the ME/CFS Research Roadmap!

#MEAction is sending an urgent letter to the newly appointed National Institutes of Health (NIH) Director, Dr. Jay Bhattacharya, calling for the NIH to allocate $50 million to fund the ME/CFS Research Roadmap.

Sign Our Letter TODAY:

- Sign our letter urging the NIH Director allocate $50 million in funding to execute the ME/CFS Research Roadmap.

- Share this petition and our social media posts with friends and family to spread the word. Use the hashtag #FundMERoadmap to amplify the message.

I'm about to end this long thread with calls to action (all US based)

Many go far beyond helping ME/CFS and Long Covid patients. Disabled folks have to stick together!

#MEAction has a page on saving Medicaid. Tasks are listed by energy (low to high) with sample scripts for email / phone calls to your congress member. There are tips on how to schedule an in-person visit

https://www.meactions.org/medicaid

14/n

@mecfs @longcovid

#USPol #Advocacy #Medicaid #SaveMedicaid #MEAwarenessDay #MillionsMissing

Some ME/CFS resources (groups, documents, videos) in no particular order:

I mentioned the #MEAction group earlier in this thread (see #StopRestPace post)

Their website has lots of good info!

https://www.meaction.net/

Their events calendar includes support groups, advocacy meetings, and support for artists and writers:

https://www.meactions.org/event-list

Recent youtube posts:

https://www.youtube.com/@MEActNet/shorts

8/n

@mecfs @longcovid

#MEcfs #PwME #LongCovid #MillionsMissing #WorldMEDay #MEAwarenessDay

Okay, taking a break for a while!

I'm resting to avoid PEM (post-exertional malaise) also called PESE (post-exertional symptom exacerbation)

Speaking of resting here's a link to the #StopRestPace page by #MEAction which was created a few years back to explain the importance of pacing and resting to new Long Covid patients:

https://www.meaction.net/stoprestpace/

It has links to a few different pacing and management guides.

6/n

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing
#MEAwareness #WorldMEDay

May 12th is Myalgic Encephalomyelitis (ME) Awareness Day. On this day, the millions of people with ME gather to demand recognition, research and clinical care for people with ME, also known as ME/CFS.

https://www.meactions.org/millionsmissing25

#MillionsMissing #MEAction

Image of someone lying in bed in a darkened room, with a large butterfly visible through the window.

Jamie Seltzer from #MEAction talks about tomorrow's Millions Missing S.O.S. protest in Washington, DC (at noon EDT)

https://www.youtube.com/watch?v=3CFxmR7QxUw

Want to join in? Go to

https://www.meactions.org/millionsmissing25

#MEAction encourages all people with disabilities to join this fight!

@mecfs @longcovid @disability

#MillionsMissing #MEcfs #LongCovid #MEAwareness #Disability #DisabilitySOS

G*ddammit Minnesota - state legislature is proposing to cut all #LongCovid funding, including a grant to advocacy group #MEAction

https://thesicktimes.org/2025/05/07/minnesota-house-budget-proposes-eliminating-state-long-covid-program/?mc_cid=b7de65a247&mc_eid=70638fc8c9

Hiring Librarians Podcast S02 E12: Jay

Oh hey, it’s the twelfth episode of season two!

This episode my guest is Jay, who you may know from the Library Punk podcast. If you haven’t listened to it, it’s a leftist podcast, and I find it fun, interesting, and opinionated. I did an episode back in October. While I was there, Jay mentioned that he had recently transitioned from his role as the director of a small academic library to a role in the cataloging department of a public library system. I thought that would be an interesting journey to talk about, so (six months later) here we are. I hope you enjoy our conversation.

An AI-generated and not completely error free transcript is here.

Speaking of links, in this episode we talk about:

This podcast is available on Spotify, Apple Podcasts, YouTube music and other various podcasting sites (let me know if you can’t find it on your preferred platform).

I’d love to hear your requests or other feedback for moving forward. And please do reach out if you want to be a guest!

#CripLib #Librarian #librarians #libraries #Library #libraryCareers #libraryHiring #libraryInterview #libraryJobs #libraryPodcast #LISCareers #MEAction

🚨 Call to action! 🚨

#MEAction has written a letter to NIH demanding full funding for the ME/CFS Research Roadmap

And they've asked folks to sign on to this letter:

https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form

From the letter:

"NIH budget for ME/CFS is $13 million for fiscal year 2024/25– the lowest in comparison to its disease burden of any disease monitored by NIH"

Even if you don't sign please boost 🙏

Thank you! ❤️

@mecfs @longcovid

#MEcfs #PwME #LongCovid #NEISVoid #ChronicIllness #Disability

Reminder: May 12 is International ME Awareness Day! Want to join the #MEAction #MillionsMissing 2025 protest in Washington, DC, but can't go in person? Attend virtually by submitting a photo of yourself 😁 airtable.com/appvOnNOiTgI... 🚨Deadline is May 5th! (end of day)🚨 #MEcfs #LongCovid #PwME

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