Patient-Led Research Collaborative

ID: Elle Siebert, Nicholas Rodelo, and Sara Johnson stand outside of City Hall after the Long COVID Awareness Day resolution was announced. The text reads, “The Sick Times. Los Angeles recognizes Long COVID Awareness Day. Local advocates pushed America’s second largest city to formally observe the day on March 15. By Miles W. Griffis.”

“We need to maintain and build this momentum through Long COVID Awareness Day,” said Johnson, who supported the Los Angeles resolution. “This [recognition] should be a springboard.”

The city council of Los Angeles passed a resolution to recognize Long COVID Awareness Day on March 15. The resolution will also light the iconic City Hall teal.

@mileswgriffis.bsky.social was at City Hall and spoke with the advocates who made it happen: bit.ly/40BRxHT

#ShareGoodNewsToo: Los Angeles will recognize Long Covid Awareness Day (Mar 15). City Hall will be the color teal around the time of the Academy Awards!

🙏 to the orgs leading the effort, incl.
@cleanairla.bsky.social, @togetherwemask.bsky.social, @longcovidjustice.org, and @patientled.bsky.social.

Miles, a white, bearded man in his early 30s poses for a selfie infront of City Hall in Los Angeles. He wears a n-95 mask, white shirt, and bolo tie. It’s a sunny, Southern California day.

Three supporters of the Long COVID Awareness Day motion stand outside city hall. They all wear high quality black masks and pose for a photo infront of colorful tile.

BREAKING: the city of Los Angeles just officially recognized Long COVID Awareness Day, and will light City Hall teal in observation of the day on March 15.

I was at the City Hall meeting and just spoke with the advocates that made it happen. Story to come in @thesicktimes.org!

Six years in, mental health care providers are still uninformed on Long COVID. And it’s making the crisis worse. - The Sick Times Six years into the ongoing COVID-19 pandemic, many people living with Long COVID still aren’t getting the mental health support they need.

Today @thesicktimes.org: Elizabeth Yuko examines why people with Long COVID struggle to get appropriate mental health care. One big issue, she found, is that professional associations haven't offered guidance on the disease. thesicktimes.org/2026/02/24/s...

Such a cool article about “long COVID” 🦠 which has affected millions of people (many of them being young adults) and how HIV🩸 research has helped us learn more about latent viruses! #PITT_ID26

Solving Long COVID: How Decades of HIV Research Paved the Way Discover how UCSF is leading the charge in Long COVID research, uncovering key findings that advance our understanding of the condition. UCSF researchers have adapted innovative tools and methodologie...

“One day soon, we’ll look back on LIINC as part of the groundswell that forever changed the understanding of conditions like #LongCovid,” @ahandvanish.bsky.social said. “The competence and credibility they have brought to the field has been rivaled by very few..." www.ucsf.edu/news/2026/01...

Solving Long COVID: How Decades of HIV Research Paved the Way Discover how UCSF is leading the charge in Long COVID research, uncovering key findings that advance our understanding of the condition. UCSF researchers have adapted innovative tools and methodologie...

"Peluso also emphasized the continued need to involve patients... @ahandvanish.bsky.social, co-founder of @patientled.bsky.social, said UCSF's researchers not only.. recognize(d) that SARS-CoV-2 was causing this disorder, but they listened to patients & sought their participation in finding answers"

Solving Long COVID: How Decades of HIV Research Paved the Way Discover how UCSF is leading the charge in Long COVID research, uncovering key findings that advance our understanding of the condition. UCSF researchers have adapted innovative tools and methodologie...

“In the early era of HIV, we tried single-drug therapies, but nothing worked. Two drugs, that didn’t really work. Three drugs – boom,” Deeks said. “That’s the way it worked for HIV, and that may be the way it works for #LongCovid.” www.ucsf.edu/news/2026/01...

Solving Long COVID: How Decades of HIV Research Paved the Way Discover how UCSF is leading the charge in Long COVID research, uncovering key findings that advance our understanding of the condition. UCSF researchers have adapted innovative tools and methodologie...

“HIV taught us how chronic viral infections can affect the body long after initial illness, and how important it is to involve patients in that research,” said @michaelpelusomd.bsky.social. “Applying those lessons to #LongCovid has helped us accelerate discovery” www.ucsf.edu/news/2026/01...

3) Low-Dose Sirolimus (Rapamycin) for Long COVID
clinicaltrials.gov/study/NCT069...

4) NE3107 for Long COVID
clinicaltrials.gov/study/NCT068...

5) Tafenoquine for Babesiosis with Severe Fatigue
clinicaltrials.gov/study/NCT066...

1) Lumbrokinase for LC, ME/CFS, Post-Treatment Lyme Disease
clinicaltrials.gov/study/NCT065...

2) Antivirals for Long COVID
Trial will test if two repurposed HIV antivirals can reduce symptom burden in adult participants with Long Covid compared to placebo.
clinicaltrials.gov/study/NCT065...

cheery pink background with white and green pills in the foreground

One of the best sites running a wide variety of clinical trials for #LongCovid and other IACCs is @coresinai.bsky.social, via @putrinolab.bsky.social !

At least 5 trials are currently recruiting - see links below for eligibility!

Logo of the patient led collaborative

It’s an honour to have joined the @patientled.bsky.social as a contributor. The PLRC published the first study on long COVID, establishing the phenotypic characteristics of the disease doi.org/10.1016/j.ec..., and the most cited paper on LC, outlining its biomedical features doi.org/10.1038/s415...

it me ⬇️

Would love for people with ME/CFS to check this out—as well as any researchers or healthcare providers who’ve ever worked with someone with ME/CFS!

#Medsky

Sharing for my fellow fatiguers who may be interested in participating. 😊

This is a flyer for the Rest & ME/CFS research study, IRB number 26-6. It says "participate in a survey about rest, energy, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". In the upper right corner it says “Questions? Email Study Co-PI Victoria: empwrtc@protonmail.com”. Below the header is interwoven circles, one is black with text that says Fully Virtual, low- energy version included. The circle behind is an image of white silk wrinkled. Next to it text says “To participate you must be: Over the age of 18 AND EITHER Have ME/CFS worked with at research (self or professionally diagnosed) or be A medical/healthcare provider who has least one person with ME/CFS, currently practicing or conducting research”. Below this it says learn more at www.restandmecfs.com There are two icons on the bottom left corner. One says ETC and above it are six icon-stick figure people holding hands in a circle. Next to it is Cal Poly Pomona's logo, a diamond with an orangey yellow background and palm trees and a building inside. The Cal Poly Pomona Institutional Review Board has reviewed and approved for conduct this research involving human subjects under protocol IRB 26-6.

PLRC member Dr. Copeland has launched a research study on rest, energy, & #MECFS — open to people with ME/CFS & healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS.

More info: restandmecfs.com

Long COVID is here to stay—even in children Post-acute sequelae of SARS-CoV-2 infection (PASC, also known as long COVID) are complex, multisystem, long-lasting complications of SARS-CoV-2 infection that profoundly impact the daily life of those...

“Finding a cure for long COVID needs to become a top research and health-care priority. Although clinical trials in adults are ongoing and increasing in numbers, none have yet been launched for children….This delay leaves millions of children without treatment during crucial developmental years.”

Long COVID is here to stay—even in children Post-acute sequelae of SARS-CoV-2 infection (PASC, also known as long COVID) are complex, multisystem, long-lasting complications of SARS-CoV-2 infection that profoundly impact the daily life of those...

“The new evidence that reinfections can trigger or worsen this chronic condition [in children] suggests that the societal burden is set to grow. With no therapy currently available, the number of children living with a chronic and often debilitating illness will continue to rise.”

“Reinfection was associated with more than double the risk of a long COVID diagnosis” in a large study of children and adolescents.

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...

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

🧵

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/

And much more, thanks to your support!

Help us keep our work rolling through 2026 and beyond by supporting our year-end campaign. Now through January 1, 2026 all donations will be matched up to $100,000!

Support: patientresearchcovid19.com/donate/ /END

• 4 PLRC members participated in the NYC Department of Health & Mental Hygiene #LongCovid Patient & Community Advisory Committee to guide researchers in multiple studies on LC, including their most recent study on the experiences of caregivers for children with LC / 17

• Participated in the co-design and development of an open-source, personalized symptom tracking and transmitting smartphone app for rare diseases via a Chan Zuckerberg Foundation grant. /16

Other work:

• Co-organized Keystone Symposium (August 2025), which gathered 200+ Long COVID researchers around the world in Santa Fe.

• Trained community leaders from the nonprofit Redes da Maré–serving favela territories in city of Rio de Janeiro, Brazil–on #LongCovid /15

Medical Provider Education:

• Created a #LongCovid treatment guide with @rthm.bsky.social (coming soon!)

• Presented to @projectechohq.bsky.social (global Long COVID medical education program)

• Helped organize speakers for future Project Echo sessions. /14