So grateful to the community that sustains PLRC’s pathbreaking work on Long Covid and related conditions like ME/CFS. Living with an illness that has zero FDA-approved treatments, the first-class research PLRC leads is such a source of hope to me. Gifts are doubled through the end of the year!

If you’re not familiar with @patientled.bsky.social’s uniquely successful model, here’s a nice write-up. “I’ll admit that I was skeptical…Given the complexity of the science, wouldn’t the N.I.H. be better suited to this role than the patients, some of whom are very ill? “I was wrong.” #LongCovid

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So grateful to friends and family who sustain PLRC’s critical work. When so much Long Covid and IACC research misses the mark because it leaves out what we know from actually living w/these conditions, PLRC performs a critical function in bridging that disconnect. Please help keep that work going!

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/

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...

I don’t want to formulate words yet, but my friend Alice Wong, @sfdirewolf.bsky.social of the Disability Visibility Project, has passed. Here are the words she left behind: www.instagram.com/p/DREMDNBjnq...

‘Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, & full of love.’ —Alice Wong

NEW PAPER: A patient-engaged study reveals significant gaps in Brazil's universal health system (SUS) for people with #LongCovid. Co-authored by @patientled.bsky.social researchers, the study followed patients up to 2 years after COVID hospitalization. 🧵 1/11

Participants are now enrolling in our #longCovid randomized, controlled trial of tirzepatide. The largest trial to test a treatment for this condition. Home-based—no sites. In today's @sandiegouniontribune.com www.sandiegouniontribune.com/2025/11/01/c...

The paper is available to read at: www.thelancet.com/journals/lan...

Thanks to my wonderful collaborator Lara Goxhaj, and to the entire author team @lisamccorkell.bsky.social, @fvrhijn.bsky.social, @leticiasaurus.bsky.social, and @julialmv.bsky.social. And thanks to @michaelpelusomd.bsky.social for comments on an early draft. (12/12)

We conclude that the creation of a set of questionnaires, in partnership with regulators and in deep dialogue with the community of people with Long COVID should be a priority in the field. (11/12)

Some options already exist but none of them evaluates all of the following concretely and comprehensively: PEM-induced functional impairment, dysautonomia, food and environmental sensitivities, cardiovascular dysfunction, and neurological dysfunction. (10/12)

Moreover, many people with Long COVID do not meet the diagnostic criteria for ME. We need a set of questionnaires (to supplement non-questionnaire measures) that can assess disease severity across all phenotypes. (9/12)

We recommend urgent research on whether the FUNCAP can serve as the questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)

The FUNCAP questionnaire, designed with extensive patient involvement, measures with concrete benchmarks the severity of functional impairment across a number of relevant dimensions (physical, cognitive, sensory, orthostatic). (7/12) www.funcap.no

But there are two problems with this: 1) the hallmark of ME is PEM, not fatigue 2) how fatigued people feel is subjective This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)

One well-defined Long COVID presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)

So, which questionnaire should we use in Long COVID trials? This is a very tricky question because Long COVID is highly heterogenous: it can present in a lot of different ways. So, we need a set of questionnaires that can cover all presentations. (4/12)

In Long COVID, outcome measures are almost always questionnaires. But if questionnaires don't ask the right questions, someone might improve a lot from the drug but this might not be picked up by the questionnaire. (3/12)

A number of highly anticipated Long COVID trials have recently reported negative results: see their phenotypic eligibility criteria and the outcome measures used in the table below. (2/12)

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 Lancet, Infectious Disease: 'Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease' By Lisa McCorkell, Femke van Rhijn-Brouwerb, Letícia Soares, Julia Moore Vogel, Lara Goxhaj, Chloé de Canson www.thelancet.com/journals/lan...

I was a (paid) test user for this trial and am thrilled w/the accommodations it makes to include people as severely ill as I am! If you’re in the US and have Long Covid, check it out and share w/friends! Also: if you don’t see your state yet, you can sign up to be alerted when yours is added!

2 things I forgot to mention in this lengthy thread: 1. We are hosting a webinar on 11/5 @ 2 eastern / 11 pacific where we will share more info & answer questions. Register here: scrippsresearch.zoom.us/webinar/regi... 2. The clinical trials . gov link is: clinicaltrials.gov/study/NCT071...

LoCITT-T is a 1,000-person double-blind, randomized, placebo-controlled trial. This trial has been designed in partnership with patients (not just me!) throughout. For example, most Long COVID clinical trials that have released results have not resulted in the improvement they hoped for... 2/16

The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is officially open for enrollment for people with Long COVID in: Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah longcovid.scripps.edu/locitt-t/?ut... 1/16

A new at home clinical trial for #LongCOVID launches today to test tirzepitide. Co-lead @julialmv.bsky.social, argues in a new op-ed that decentralized trials will accelerate research and make clinical trials more accessible for people with Long COVID. thesicktimes.org/2025/10/30/w...

After 3 years of work, we’re so excited to release a new study by PLRC in collaboration with Long COVID India on #LongCOVID healthcare access in India! This research combines patient & healthcare provider perspectives to examine barriers to care: india.patientledresearch.com 1/

#NEISvoid find of the day! A collective of people with Long Covid have made a spoken word album of poetry and music, and the proceeds go to @patientled.bsky.social Patient-Led Research Collaborative! So cool! Check it out: www.playitforward.com/projects/voi...

Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with #LongCovid for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input! Find a trial site near you: addresslongcovid.com/sites/

Great @thesicktimes.org article on 3 upcoming #LongCovid trials on JAK inhibitors. PLRC did patient engagement and helped shape 1 of the 3 here, REVERSE-LC (baricitinib) led by @weselymd.bsky.social — who also used our scorecards for patient engagement! thesicktimes.org/2025/08/05/t...

So well said.

Really cool news: this study has been expanded to include people whose LC started more than two years ago! Check it out:

This really got me. I think it’s hard to really understand if you haven’t experienced it. Excluding my job, I’ve lost 95% of the awesome life I built. First bit by bit, then suddenly all at once. And I’m better off than many. My path was H1N1-Giardia 🦫-Covid. I pushed thru til it came for my brain.

Today @thesicktimes.org: Takeaways from last week's @keystonesymposia.bsky.social Long COVID & IACC meeting. Danny Altmann said in his closing remarks that the Long COVID field is “coming of age,” and this conference represents an important milestone. By me and @mileswgriffis.bsky.social:

Powerful closing remarks from PLRC co-founder @ahandvanish.bsky.social at the Keystone Symposia on #LongCovid last week, reflecting on the state of research and the journey of the patient community: "In our immediate presence, time slows, while the world beyond speeds up, and moves without us”

In this episode of Still Here: A conversation between @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social comparing and contrasting #LongCOVID and ME clinical trial designs for drugs targeting immune dysregulation and viral persistence. 🎧 Listen now! bit.ly/3JgQFmZ

Incredibly exciting diagnostic tool potential — @immunofever.bsky.social MIT team is doing nailfold capillaroscopies on #LongCovid patients before and after a NASA lean test, and said the results have been incredibly striking compared to controls. My results were very abnormal !

Re: my last boost of @patientled Really loved Hannah's point that #LongCovid is not mysterious & unknown....whenever you read or hear that, replace it with "complex, devastating and increasingly well-understood as an incurable neuro-immune disorder."

Summaries of presentations made at the recent Patient-Led Research Collaboration (PLRC) @patientled.bsky.social conference solvecfs.org/plrf-event-h... Prepared by Solve ME/CFS Initiative @solveme.bsky.social #LongCovid #MEcfs

Excited to announce that I'll be on the Scientific Committee for the 3rd Long COVID Int’l Conf, Nov 19–21, 2025 in Boston (hybrid). Abstracts due Aug 29! Submit here: virology.eventsair.com/long-covid-i... 🌐 More info: academicmedicaleducation.com/meeting/long...

Excellent article appearing in today's @washingtonpost.com on navigating life with #hiddendisabilities. #LongCOVID #MECFS wapo.st/44OdrdX

1/ "I remember the first meeting [with @patientled.bsky.social] that I went to. I raised my hand on the Zoom call and asked if the speaker could repeat the question. I explained that I was having memory issues": www.healthcentral.com/condition/co...

In this episode of Still Here, we're recapping the Patient-Led Research Fund (@patientled.bsky.social) summer 2025 webinar. Plus, an update about the National Institutes of Health’s RECOVER-Treating Long COVID initiative. bit.ly/4llZFVa

We’ll have a full summary report later this week on key takeaways and highlights. Have questions for researchers? Let us know!

Learn more about the conference her from our interview with co-organizer Hannah Davis. thesicktimes.org/2025/05/09/a...

We’re at the @keystonesymposia.bsky.social on Long COVID and related IACCs! The conference is in Santa Fe, New Mexico and features talks, posters, and workshops from leading researchers 😷🏜️😷