I'm working on a story for @thesicktimes.org about RECOVER clinical trial results that have been shared so far (from the VITAL, NEURO, and AUTONOMIC studies), and am looking for people in the #LongCOVID and IACC communities to share what they think of the findings. DM or email me!

Exciting update!

The drive to ask Senators to sign a request for Long Covid funding is going so well that the deadline has been extended to Monday—calls and shares this weekend will continue to help!

And 13 Senators have already signed on!

Ask yours to join: tinyurl.com/LongCOVIDCall

Please call or email your Senators by close of business Friday 4/17 & ask them to sign on to the “Dear Colleague” letter for Long Covid funding:

Call tool: win.newmode.net/longcovidcam...

Email tool:
win.newmode.net/longcovidcam...

In Pursuit of Understanding the Crash What Post-Exertional Physiology Tells Us About ME/CFS

#MECFS

Important piece from @sunsopeningband.bsky.social detailing what’s known about post-exertional malaise and what science must take into account in order to advance research on this critical phenomenon.

I'm extremely belated at boosting this but *waves hands* these workshops are happening this week

It's a creativity + advocacy workshop:

a way to creatively frame your own experiences

to help push for key systemic goals

in preparation for #MillionsMissing

Person using a megaphone to amplify their voice, promoting storytelling for the #MillionsMissing campaign in 2026. Text: "Storytelling is a key part of #MillionsMissing this year! There are HUGE policy implications this year for telling your story. Share your story on social media and/or to our story bank. See our #MillionsMissing Take Action Toolkit for all the info." Detailed photo description: White woman with brown hair pulled back wearing sunglasses and a coat holds megaphone and is speaking into it. Above her is a sign that says "amplify your voice."

Storytelling is a key part of #MillionsMissing! Find all you need in our toolkit: https://ow.ly/IUOk50YGIh9

It’s essential that we make our policymakers understand that ME is a serious, complex disease that deserves care and support, appropriate treatments and research.

#FrailAndFurious #MECFS

Tell Congress to Fund ME/CFS Research in FY27 9 million Americans live with ME/CFS — a serious, disabling disease with no FDA-approved treatments. I just contacted my representatives to urge them to increase CDC funding, keep ME/CFS as an eligibl...

Email Congress for ME/CFS funding!

Prescripted—just takes 1 min! Can personalize it if you like, but it’s not required.

There’s an option to follow up w/phone calls. My ME is so severe that I can’t speak, but calls make even more impact, so I’m v grateful to anyone willing to lend me their voice 🤍

Community Letter Sign-on Form Thank you for adding your voice to this effort. By signing on, you are joining patients, caregivers, clinicians, and allies across the country in asking State Medical Boards and State Health Leadershi...

#MECFS is not consistently recognized, diagnosed, or safely managed!

Join #Solve and #MEAction in asking State Medical Boards to meet and support questions on national medical licensing exams.

Add your name & share: tinyurl.com/StateMedicalBoardForm

#NEISvoid, #MECFS #pwME #LongCOVID #IACCs

Heath Howard enters the chat

running for the seat now held by Jeanne Shaheen

Those of you following along at home have heard me scream about how Jeanne and Mags Hassan have been 25% of the problem w/ key votes 2025

Heath is an Autistic guy w/ a disability who seems to be a real one doing the work

Im Having A Lot Fun This Is Really Fun For Me Dan Levy GIF Alt: GIF of Dan Levy in Schitt’s Creek saying “I’m having a lot of fun.

Nothing like getting ready for in-person doctor’s appt with #MECFS

Subjecting myself to (likely) more medical trauma for little reward and knowing I’ll be in even worse shape until March 🫠

Donate to Keep LC Campaign Founder Housed and Medically Stable, organized by Melissa Mazur Friends, Long COVID Campaign Founder Meighan Stone needs our help! … Melissa Mazur needs your support for Keep LC Campaign Founder Housed and Medically Stable

#pwLC #pwME #NEISVoid @lccampaign.bsky.social founder @meighanstone.bsky.social needs our help! She’s had a recent housing emergency/mold exposure—causing unforeseen expenses/health issues. More info here.👇 Please help if you can and share with anyone you know who can assist. gofund.me/6bd94d22d

Urgent last request to help us meet our fundraising goal at @thesicktimes.org! Help be a part of independent journalism on Long COVID.

All donations and shares are greatly appreciated 🙏🏼😷

Statement Re: OU Discrimination Investigation

Today, my client, Mel Curth, submitted her appeal of the University's Institutional Equity Office finding that she engaged in arbitrary and capricious grading of a student's assignment in violation of that student's religious liberty.

Hey Jon Stewart, jokes about wearing masks aren't funny Critics of the Daily Show host say he's a hypocrite.

Wrote about how disappointing it is that Jon Stewart punched down on people masking at @motherjones.com, when people should mind their own business and leave mask wearers be. www.motherjones.com/politics/202...

I want to try it but I’m not sure if it’ll work for me. The clip can only go in your left ear. I mostly lie on my side and rely on noise cancelling earbuds. Not sure I can wear the earbuds with the clip. I need to reach out to them because they can help figure out which earbuds are compatible.

I asked a couple weeks ago and didn’t get many responses here or on Twitter.

But a couple people responded.

bsky.app/profile/ripp...

Anyone use Lumia? #POTS #MECFS #LongCovid. Looking for personal experience.

I became more like this as I aged, especially after developing ME.

Task initiation/switching is so much harder now. It takes me hours to be functional in the AM.

If you have Acadian or French roots in Louisiana, you might be wondering, does Bill C-3, Canadian Citizenship by descent,give me a Canadian passport? Check in today to understand how you are affected... TikTok video by Laurie RCIC, legal professor

I think that’s just the example they’re giving

Did come across this video specifically talking about those with Acadian heritage.

www.tiktok.com/t/ZTrvWbUAx/

I haven’t seen any exceptions for health/disability. This pathway appears to be different than applying for citizenship.

The official site listing the rule change to citizenship by descent.

It might extend further than that but I’m not 100% sure.

This is the official site.

This is the official site with the rules if you want to look into it.

Thank you! I need to start tracking down birth certificates.

From what I’ve read, yes.

The example they give goes all the way back to a great grandparent.

Claiming Canadian Citizenship by Descent Under Canada’s New Citizenship Act Bill C-3 - Canada Immigration and Visa Information. Canadian Immigration Services and Free Online Evaluation. Learn how Canada’s new Bill C-3 restores citizenship by descent, removes the first-generation limit, and allows multigenerational claims for those born abroad.

In case you missed it Canada changed their citizenship laws recently.

If you have Canadian ancestry you may be eligible for citizenship by descent.

I need to look into it some more but this is amazing.

immigration.ca/claiming-can...

March 31, 2020:

Telehealth is vital for people with Long COVID. Don’t let it disappear. - The Sick Times Changes to telehealth policies are more than an inconvenience. For many of us, critical infrastructure is in jeopardy, and we urgently need government policy to protect it.

Telehealth is vital for people with #LongCOVID. Don’t let it disappear

thesicktimes.org/2025/12/19/t...

This article explains why telehealth (remote/virtual healthcare) is needed by patients with Long Covid,ME/CFS, & other chronic illnesses & lists some advocacy actions for Canada & the US

#MEcfs

#NEISvoid Letterboxd squad: have you rated Unrest yet?

There’s some pretty frustrating ableism in the reviews that’s dragging the score down. I’d love to boost it to encourage other Letterboxd viewers to check it out!

This hurts my heart because some parents would risk having a dead kid due to believing that's better than having an autistic kid.

(No, vaccines don't lead to people being autistic but that's why some people aren't get their kids vaccinated).