Over two years ago, the magnificent Beth Mazur ended her life while visiting me. I miss her. www.nytimes.com/2026/04/03/s...

May I End My Life With You?

nytimes.com

Thinking of my beloved tiger queen Alice Wong today, and what better a way to celebrate than with her work; Alice was so many things, and among them was an incredibly sharp, talented writer with a luminous love for words.

Now at 2 million downloads and the 4th highest @altmetric.com rated peer-reviewed paper in the past 3+ years Thanks to @ahandvanish.bsky.social @lisamccorkell.bsky.social @julialmv.bsky.social www.nature.com/articles/s41...

Long COVID: major findings, mechanisms and recommendations - Nature Reviews Microbiology

Long COVID is an often debilitating illness of severe symptoms that can develop during or following COVID-19. In this Review, Davis, McCorkell, Vogel and Topol explore our knowledge of long COVID and ...

nature.com

“You’re not just becoming disabled,” said Elle Seibert, 31, who has dealt with debilitating fatigue and cardiac symptoms since 2020. “You’re realizing how easily society at large and people in your life will abandon you when you cannot offer them things.” www.latimes.com/science/stor...

Long COVID leaves thousands of L.A. county residents sick, broke and ignored

Six years after the COVID-19 pandemic began, doctors are still treating long COVID patients with complex symptoms and unknown futures.

latimes.com

For #LongCovid Awareness Day, we’re releasing the 2026 Long Covid Fact Sheet! This is a list of key statistics about LC, using recent data to reflect contemporary risks. We hope this will be useful for journalists, policymakers, patients, & others! /1

its long covid awarness day, if you wanna help me be reconnected to all of my belongings that I couldnt bring with me in the air ambulance i had to take across the country (that i had to take bc of lc) you can donate here gofund.me/deac55be8 I know others need it more so I understand if not <3

Donate to Critical Healthcare Support for Victoria, organized by Vee Copeland

Hello everyone, My name is Victoria and thank you for checking out my gofundme.… Vee Copeland needs your support for Critical Healthcare Support for Victoria

gofund.me

We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @rthm.bsky.social to help patients & providers explore treatment options together. The guide focuses on 24 medications, but includes a few other interventions for breadth /1

Long COVID Treatment Guide

An evidence-supported guide covering treatments addressing multiple Long COVID symptoms & mechanisms — focused on prescription medication, with a limited set of supplements, OTC medications, procedure...

rthm.com

3 years ago @ahandvanish.bsky.social, @lisamccorkell.bsky.social, @julialmv.bsky.social and I published a review on #LongCovid. Since then it has been downloaded nearly 2 million times and is #4 of >500,000 papers published since by @altmetric.com www.nature.com/articles/s41...

Long COVID: major findings, mechanisms and recommendations - Nature Reviews Microbiology

Long COVID is an often debilitating illness of severe symptoms that can develop during or following COVID-19. In this Review, Davis, McCorkell, Vogel and Topol explore our knowledge of long COVID and ...

nature.com

lithub.com/remembering-.... read this achingly beautiful piece by @thrasherxy.bsky.social I keep thinking, @sfdirewolf.bsky.social was irreplaceable but she nurtured a whole-ass huge forest (or series of forests). No one can replace her, except for all of us doing the work she nurtured in us.

Remembering Alice Wong: Writer, Advocate, Friend

Though we were in frequent conversation for a decade, I only got to meet my friend Alice Wong in person just once. And when I did, I  was a bundle of nerves—and that was before she cussed me out wi…

lithub.com

Many Long COVID trials have reported negative results in 2024 and 2025. In our Comment for @thelancetinfdis.bsky.social we argue that inadequate outcome measures might have played a role. (1/12)

The C in Trump’s CFPB stands for Corporate not Consumer. Gift link: www.nytimes.com/2025/05/21/o...

Opinion | Trump Is Turning Our Consumer Watchdog Into a Corporate Protector

nytimes.com

Thank you to some amazing colleagues who took time and precious energy to craft this rapid response to the recent @bmj_latest piece. When people try to hijack #LongCOVID, #MECFS and other complex illness as psychosomatic it is important we strike back: www.bmj.com/content/389/... 1/

Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.

bmj.com

Today @thesicktimes.bsky.social: I did an exit interview with @lisamccorkell.bsky.social, reflecting on her five years at the Patient-Led Research Collaborative. You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...

Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRC - The Sick Times

Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization. The Sick Times co-founder and managing edit...

thesicktimes.org

If you are not disabled: Please use the occasion of #LongCOVIDAwarenessDay to educate yourself about the ongoing risks of COVID to yourself & those around you. We're begging you to consider the risks you can pose to others & act accordingly. There are many great articles, including this one: 1/2

Miles W. Griffis@mileswgriffis.bsky.social · 2y ago

NEW: Millions will observe half a decade of #LongCOVID this year as the ongoing pandemic turns five. For @thesicktimes.bsky.social, I wrote about the courage of millions of pwLC who have led the way in the face of so much willful indifference, cruelty, and denial. thesicktimes.org/2025/03/07/h...

Esp now we need reminders of the great work that often goes unnoticed in the US govt. Excellent feature from the @washingtonpost.com on @cureid.bsky.social . #LongCOVID #LongCOVIDAwareness2025 wapo.st/3Ft2hBe

Opinion | The free-living bureaucrat

Michael Lewis on Heather Stone of the Food and Drug Administration.

wapo.st

Today is my last day in my role at @patientled.bsky.social. I am honored to have served in this role as part of the #LongCovid movement the last 5 yrs. While there’s still much to be done to achieve support, treatment, & cures for all, I’m so proud of the progress we’ve made b/c patients led the way

Just sent to my reps, and posted in Solving MS where many have the double whammy of MS+LC. I used this to quickly email all my reps. They have told me email is better that call right now because so many people are contacting them. democracy.io

Honored to be part of the congressional briefing on #LongCovid that @immunologyaai.bsky.social is hosting this Wednesday with @virusesimmunity.bsky.social & @ejohnwherry.bsky.social! If you can, please call your congresspeople and ask their staffers to attend! www.aai.org/Public-Affai...

Excited to see this Long Covid Congressional Briefing on Feb 26 held by the American Association of Immunologists - with amazing panelists @virusesimmunity.bsky.social, @ejohnwherry.bsky.social, and @lisamccorkell.bsky.social! Just contacted all my congresspeople to suggest they send their staffers.

NEW: Trump commands the HHS to terminate a committee on Long COVID. “We need answers of why this specific committee was targeted in light of the commitment made to Long COVID [in Kennedy’s hearing] said @lisamccorkell.bsky.social. thesicktimes.org/2025/02/21/t...

Trump commands HHS to terminate advisory committee on Long COVID - The Sick Times

A new executive order from the Trump Administration commands the Department of Health and Human Services (HHS) to terminate the Secretary’s Advisory Committee on Long COVID. The order, “Commencing the...

thesicktimes.org

Three weeks ago RFK committed to collaborating with healthcare providers, researchers, and patients to better understand and mitigate #LongCovid's impact. The Advisory Committee would have been a key part of that, and now it will be terminated. www.whitehouse.gov/presidential...

Commencing the Reduction of the Federal Bureaucracy

By the authority vested in me as President by the Constitution and the laws of the United States of America, it is hereby ordered:     Section 1.

whitehouse.gov

"Officials halted midstream a training workshop for junior scientists, called off a workshop on adolescent learning minutes before it was to begin, and canceled meetings of two advisory councils." It could've been telegraphed in advance. The fear, uncertainty, chaos, and disruption are the point.

Trump hits NIH with ‘devastating’ freezes on meetings, travel, communications, and hiring

Researchers facing

science.org

NYT columnist @zey.bsky.social has written about PLRC & how we've made some of the best #LongCovid research possible, despite being a small group of chronically ill people. She's very kindly chosen us as this year's nonprofit to donate to, and we're deeply honored! www.nytimes.com/2024/11/26/o...

Opinion | Donate This Holiday Season: Long Covid Research Need Your Help

A group of long Covid patients is financing research and making progress.

nytimes.com

Thank you @lisamccorkell.bsky.social and @patientled.bsky.social for speaking to @statnews.bsky.social to keep Long Covid and patients with infection associated chronic conditions at the front of the science and medicine conversation www.statnews.com/2024/11/08/t...

NIAID issued an RFI for RECOVER-TLC! They seek responses on: 1. Potential therapeutics for #LongCovid 2. Interest in being involved on working groups 3. Biomarkers to be used in Long COVID clinical trials 4. General feedback on RECOVER-TLC More info here: grants.nih.gov/grants/guide...

Wow, what a beautiful, humanizing piece. Really remarkable to see the Audubon Society of all places produce such a high-quality account of life with Long Covid. Hope more outlets are taking notes! Feat. @edyong209.bsky.social @lisamccorkell.bsky.social @ezra.zone

A New Birding Club Wants to Help COVID Long-Haulers Safely Enjoy Nature Together

Ed Yong, an award-winning science journalist who widely covered the pandemic, recently launched The Spoonbill Club to provide community—and an accessible hobby—for folks with long COVID.

audubon.org

In my newsletter, I wrote about The Spoonbill Club--a series of birding trips that I started for Bay Area folks with long-COVID and related energy-limiting illnesses. We've done 2 small pilots that I think worked well. Here's more on the intention & planning: buttondown.email/edyong209/ar...

FINALLY! Just in time for the winter COVID surge, the CDC now has a useful wastewater dashboard. It indicates that nationally COVID wastewater levels are HIGH and rising further. You can access the dashboard here: cdc.gov/nwss/rv/COVI...

Chronic illness & disability community: I’ll be a panelist at a NASEM workshop on public access to federally-funded research results & Id love to hear ur thoughts on: What are barriers to accessing & understanding research results? What are implications of barriers? What does true access look like?