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...

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/

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...

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

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

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...

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...

"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.

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...

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

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?

In the US alone, 6% of adults & millions of children have Long COVID, with those numbers bound to grow, yet we risk losing momentum on research to date. We need a moonshot - at least $1 billion/yr in US gov funding for the next 10 years www.nature.com/articles/d41...

More great work on the need for more research on Long COVID and infection-associated chronic illness from @lisamccorkell.bsky.social and @patientled.bsky.social. Please share! www.nature.com/articles/d41...

Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...

We’re so excited to be here!