Today is the last day to support our matching gift campaign — a few generous donors are doubling all donations up to $100,000! Check out the highlights of our 2025 work in the thread below, and help us keep our work rolling through 2026. Support: patientresearchcovid19.com?form=FUNYUWT...

This thread shows the extraordinary work that the Patient-Led Research Collaborative (working on Long COVID and other infection-associated chronic conditions) has done, incl. scientific work that has challenged and massively improved the research that people without Long COVID do on the disease 1/

Thank you to everyone who made our work possible this year! Here's a thread on some of the highlights from PLRC's research, advocacy and education efforts in 2025. All of this work is carried out by a team living with #LongCovid 🧵 /1

🆘No other outlet is reporting on the Long COVID crisis with the compassion or veracity of @thesicktimes.org. 💰But they need your help to continue this work - please consider donating or, even better, becoming a monthly supporter. Some of my favourite work from this year includes...

@thesicktimes.org is one of the only newsrooms dedicated to widescale coverage of #LongCOVID. They need our support in their end of year fundraiser. Through their support, I published two major stories this year. 1/🧵 bsky.app/profile/thes...

I contributed to @thesicktimes.org as a holiday gift to myself.

Covid isn’t mild & Long Covid isn’t a decreasing threat

This is our last news feature of the year. Help us publish more stories like it in 2026 by contributing to or sharing our end-of-year fundraiser! the-sick-times.fundjournalism.org/donate/

Today @thesicktimes.org: Two companies recently debuted AI tools for people with Long COVID. Some people find them helpful for managing symptoms and following research; others are concerned about the technology. By @ravindranize.bsky.social: thesicktimes.org/2025/12/23/n...

Bochum researchers studied 123 children and found that up to 1 in 5 had impaired taste or smell after respiratory infections, including COVID. Kids with long COVID more often reported food as disgusting, even when standard tests showed nothing. journals.lww.com/pidj/fulltex...

There’s a difficult irony that many people would really rather not have to think about this (ie what started in 2020 that’s clearly still happening)… but willingness to confront it is also the best way to reduce your odds of ending up on this chart + having to think about it all the fucking time.

I dealt with my undiagnosed ME/CFS during grad school by arriving to class at least 30 minutes early so I could stare at a wall and hopefully recover a bit.

A new RECOVER study of 6.4M health records shows Long COVID risk has not decreased from 2020–2024. Incidence stayed stable across variants, reinforcing Long COVID as an ongoing public health priority. Read the study: doi.org/10.1093/cid/...

1-min action item! At the end of 2026, Medicaid recipients will be subject to work requirements unless deemed “medically frail”. This is very dangerous for people w/ME (including those w/Long Covid ME) who get sicker from exertion. Tell HHS to exempt pwME and LC: actionnetwork.org/petitions/fr...

KQED: 'After Alice Wong’s Death, Her Friends Vow to Keep Fighting for Disability Justice' "..McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever" www.kqed.org/news/1206519...

"Patient-Led Research Collaborative, an organization that has elevated the voice and expertise of those who experience this illness, has been raising funds & directing them to promising research projects — & punching far above its weight." — NY Times patientresearchcovid19.com/donate/

Since 2020, PLRC has been at the forefront of #LongCovid science & advocacy. Our work integrates patient expertise to advance research & data-driven policy that can improve the lives of people with LC. While our understanding continues to grow, much crucial work still lies ahead.

By meeting this goal PLRC will be able to sustain some of our vital day-to-day work through 2026. Please consider donating & sharing this campaign so we can keep advancing research to improve the lives of people with #LongCovid.

We're thrilled to announce that thanks to two generous donors, the Silver Giving Foundation and Lunardelli-McRee family, all donations made to PLRC will be matched up to $100K through January 1 of next year! Support our work: patientresearchcovid19.com/donate/

TEDx Talks: "How persistent pathogens could accelerate the aging process by Amy Proal" '..gut tissue collected from a person with long COVID almost 2 years after..here's the thing, these chronic pathogens are the closest thing there are to hackers of the human body" www.youtube.com/watch?v=XMcV...

“When people asked, Why do you think it hit you so hard? it seemed to carry a tinge of suspicion. I must have done something wrong to bring #LongCovid upon myself as opposed to it being the cosmic car accident that illness so often is” @philipandrewhoover.bsky.social thesicktimes.org/2025/11/28/y...

For the 50th anniversary of the Individuals with Disabilities Education Act, I spoke with advocates about how this law is crucial–and the ways in which disability education can be made better as its under attack from the Trump administration at @motherjones.com. www.motherjones.com/politics/202...

“I felt like I lived a double life. How could this sick side of me be so central, so enormous, yet so unseen by those who knew and loved me?”please read this beautiful essay in @thesicktimes.org: thesicktimes.org/2025/11/28/y...

"The problem with Long COVID is that most of society would rather not see it. We want to believe the pandemic was just a bad dream we awoke from years ago. (When I hear someone say during COVID, in the past tense, I want to flip a table.)" #LongCOVID Source: archive.md/7Rer1

A beautifully written account: it reflects my own experience of what it's like to live with Long Covid. Thank you for sharing.

“There are two kinds of people in the world: those who upon seeing someone else suffering think, That could happen to me, and those who think, That will never happen to me. The first kind of people help us to endure, the second kind make life hell.”

“When people asked, Why do you think it hit you so hard? it seemed to carry a tinge of suspicion. I must have done something wrong to bring #LongCovid upon myself as opposed to it being the cosmic car accident that illness so often is” @philipandrewhoover.bsky.social thesicktimes.org/2025/11/28/y...

There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot. There's time for new folks to join! We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants: longcovid.scripps.edu/locitt-t/?ut...

Up to ~800! 200 to go!! Let's get this out of our normal networks, find people in Puerto Rico, North Dakota, and Mississippi, and make this happen!!!

We are up to 688 LoCITT participants! If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials. We appreciate the community's help to spread the word: longcovid.scripps.edu/locitt-t/?ut...

The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is now open for enrollment for people with Long COVID in all states but Hawaii (due to concerns about maintaining temperature control in shipping), DC, and PR: longcovid.scripps.edu/locitt-t/?ut...

really cool trial of Larazotide at Mass General now expanded and open to both pediatric AND adult participants. rally.massgeneralbrigham.org/study/pediat...

Beautiful tribute to Alice 💔

An honest, heartwarming, and full of laughs tribute to Alice Wong by @thrasherxy.bsky.social. "giving pleasure, joy, affirmation and care to people you only meet once—or who you might never meet all, such as all the Palestinians Alice cared for these last two years—is the very meaning of love."

"Remembering Alice Wong: Writer, Advocate, Friend" Steven W. Thrasher on Meeting and Collaborating with the Outspoken Founder of the Disability Visibility Project published by @literaryhub.bsky.social | art by @mollycrabapple.bsky.social lithub.com/remembering-...

Oh my goodness please don't do this

I especially appreciated that Miles’s obituary recorded how much Alice did for people with Long Covid.

I regret I never told her how much it meant to me personally to be included, and how grateful I am for what she did for our movement. Thank you Alice. For this and so much more, I am so grateful. 4/4

When I was first diagnosed w/ME/CFS 8 years ago, we were pretty split off from disability organizing as a result. But Alice insisted our disabled experiences were just as valid as any other, and through this created space for coalition that has greatly strengthened chronic illness organizing. 3/

Chronic illness, especially those of us militating for better treatment options, can be an uncomfortable fit w/contemporary US disability activism often premised on the idea that inaccessible society, not our medical conditions, is what disables us (known as the social model of disability). 2/

I feel especially grateful for how warmly Alice welcomed chronically ill people into the broader disability community. 1/ #NEISvoid

This is a great obit, and I appreciated Alice’s fight for Palestinians in Gaza being highlighted. I also want to give a shout out to Miles for asking permission to cite my post when technically you don’t have to do that re media law but still an ethical thing to do.

So uh. I've spent the last five years working on a book about grief, mourning, who is allowed to grieve and how, and where we go from here, and... you can now preorder it!

500 enrollees in *less than two weeks*! So many clinical trials would take months, or even years, to enroll this number of people. This is what happens when you plan a trial that meets participants where they are, is not overly onerous, and tests something people think is worth trying.

Alice Wong, a writer and activist who was born with muscular dystrophy and who fought relentlessly for equal rights and access for people with disabilities, died on Friday. She was 51. nyti.ms/4r9WqEr

Respect Alice Wong’s call here: “When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”

If you don't know who Alice Wong was, please take a moment to read a little about her. And please consider ways you can reduce the ableism she fought against.

While Alice has become an ancestor, her work continues! If you want to share her wisdom with others, you can purchase copies of her books for your local library, share her dazzling array of digital media from DVP, or donate to her legacy fund: www.gofundme.com/f/alice-wong...

On a personal note, I just set up a monthly donation to Crips for eSims for Gaza in Alice's memory. chuffed.org/project/crip...