Hello! Welcome to Patient-Led Research Collaborative’s (PLRC) Quarterly Newsletter — this publication goes out four times a year to bring you the latest updates on PLRC’s work and critical updates on Long COVID and associated conditions.
This issue covers:
- New PLRC Report on Access to Long COVID Healthcare in India
- Spotlight: PLRC Work in Brazil
- Bezisterim Clinical Trial Expands Eligibility
- RECOVER TLC Announces New Clinical Trials
- Join the PLRC Registry
- CURE ID LC Survey Reopens
If you have been forwarded this email and would like to continue to hear from us:
Spotlight: PLRC Work in Brazil
In 2021, PLRC members Letícia Soares and Elizabeth Stelson joined a collaborative research group to study Long COVID in the city of Rio de Janeiro, Brazil. Our international research partners included the Harvard T.H. Chan School of Public Health, London School of Economics, and Brazil’s Oswaldo Cruz Foundation/National School of Public Health.
The team’s goal was to build an evidence base to support equitable Long COVID policies within Brazil’s public health system. At the time, little was known about Long COVID in Brazil, and in LMICs in general. The team aimed to fill some of those basic gaps—documenting symptom burden, prevalence, and patient experiences accessing care. We invite you to read the final report and watch the project educational videos.
Below are a few key findings that have been published so far:
Long COVID and infection-associated chronic conditions are erased in Brazil’s healthcare system due to a lack of provider and system’s management expertise, resources being primarily funneled to emergency care, and the fact that these conditions disproportionately affect marginalized groups. Read study here.
Patient-centered study design makes Long COVID research more equitable. For example, patient researchers helped make a newly developed survey instrument more accessible—with 50.1% of study participants having had less than a high school education. Read study here.
Long COVID is invisibilized in Brazil’s healthcare system. Overburdened services, limited clinical awareness, and poor care coordination contribute to invisibilization of patient needs and service demands. Read study here.
Facing a major gap in Long COVID awareness, our team partnered with the community organization Redes da Maré — serving 140,000 residents across 15 Rio de Janeiro favelas — to co-create educational videos and materials. Together with local researchers, organizers, and people living with Long COVID, we are developing clear, accessible resources about the disease and pathways to care within the public health system.
These materials will be shared in 2026. PLRC is proud to collaborate with an amazing team for these research projects in Brazil–many thanks to Flora Cornish, Emmilie Aveling, Margareth Portela, Sheyila Lima, Bárbara Caldas, Brenda Sabaine, Diana de Souza, Carolina Dias, and all our partners at Redes da Maré.
ADDRESS-LC Expands to People Living with Long COVID >2 Years:
We’re excited to share an important update about the ADDRESS-LC clinical trial for Bezisterim.
Thanks to patient input and community advocacy, the trial is expanding:
Eligibility has expanded to include people living with Long COVID for more than 2 years, including first wavers (2020 onwards).
Find a trial site near you: https://addresslongcovid.com/sites/
The trial drug, Bezisterim (NE3107), is an investigational drug that may help reduce certain kinds of inflammation present in Long COVID that cause impaired cognition and fatigue.
Who can participate?
- 18 to 64 years of age
- Have brain fog and fatigue attributed to a COVID infection
- Have symptoms for at least 3 months.
- See https://addresslongcovid.com/ for further eligibility details.
Please note that you may not be eligible if you:
- Were diagnosed with attention deficit hyperactivity disorder (ADHD) prior to the index COVID-19 infection
- Are currently taking or have received naltrexone within 30-days prior to the screening visit.
RECOVER-TLC Workshop Announces New Long COVID Clinical Trials
This September the Foundation for the National Institutes of Health (FNIH) and the National Institute of Allergy and Infectious Diseases (NIAID) hosted the second annual RECOVER-TLC workshop. In the event, which counted with researchers and patients, a new set of clinical trials for Long COVID was announced, and updates on clinical trial research were discussed, including findings from trials in the RECOVER program.
New Long COVID clinical trial announced:
— Low Dose Naltrexone (Pediatric trial)
— Baricitinib (an immunomodulatory medication)
— Glucagon-Like Peptide-1 (GLP-1) agonist
— Stellate Ganglion Block (SGB), a procedure where an anesthetic is injected into a type of never bundle located in the patient’s neck
It was also announced that RECOVER expects to have trial results for the first round of trials, VITAL and NEURO, by early 2026, and the other three protocols by 2027. It was also discussed that TLC may have the budget for additional trials and will make a projection about that soon and share that publicly. You can find a great summary of the two day workshop reported by The Sick Times here.
Highlights also included workshop presentations from the following PLRC members (now available on youtube):
“Discussion on GLP-1 RAs” — featuring PLRC member Dr. Julia Moore Vogel
“Patient Perspectives” — featuring Michael Sieverts sharing his experience participating in the Baricitinib trial
“Discussion on Baricitinib” — featuring PLRC co-founder Hannah Davis
“Five equity challenges and possible solutions in Long COVID clinical trials” — featuring PLRC co-lead Dr. Letícia Soares
“Ethics in Long COVID research design” — featuring PLRC member Dr. Victoria Copeland
Join the PLRC Registry!
Earlier this year we launched the PLRC Registry, a user-friendly registry platform, designed by patients for patients, to connect people with clinical trials and research studies in Long COVID and associated conditions.
Whether you have Long COVID, another infection-associated chronic illness (IACI), or no chronic illness at all, joining the PLRC Registry will help advance research on Long COVID. Please consider joining and sharing this with your networks!
Once you join, you’ll receive a short survey every three months about your Long COVID status, COVID-19 history, and other chronic conditions linked to infections. Your information will help us understand Long COVID development, remission, and relapse over time.
Signing up is easy, and as a participant, you’ll have the option to:
- Get information about research studies and clinical trials you may qualify for.
- Share additional health data, including electronic health records.
Anyone 18 or older can participate!
CURE ID LC Treatment Survey Reopened!
The CURE-ID is a platform to share and explore treatment experiences. The data collected by CURE-ID surveys helps researchers understand the drug treatments that are being used by patients and their experiences with these treatments. These data support recommendations on which drugs to prioritize for clinical trials. The CURE-ID team is encouraging people with Long COVID to participate in the treatment experience survey. Please consider making a report if you haven’t yet, or update your existing one in the portal.
CURE-ID particularly need reports on:
- Treatments that *haven’t* worked
- Newer treatments (monoclonals etc)
- More data overall, to support robust data analysis
To update a previously submitted report, click “Log in” here. Then go to the “My submissions” section of your account and click the three vertical dots, then click “edit.” To make a new report, go here and click “Share treatment.” You may have to make a new account if you haven’t already. You can also email curesupport@nih.gov for assistance entering or updating your case!
If you’d like to help with outreach, we’ve put together a toolkit here. Please feel free to use it!
Read, Listen, Watch & More
- Read:The New York Times, “Long Covid Risk for Children Doubles After a Second Infection, Study Finds”
- Listen: Voices From the Land of Long Covid — a spoken-word album of poetry and music, created by people who are living with Long Covid. 100% proceeds go to PLRC.
- Watch: U.S. Department of Health and Human Services hosts Long COVID roundtable, “Invisible Illness: Leading the way on Long COVID”
- Read: The Sick Times, “Violet Affleck advocates for children with Long COVID, masks, and clean indoor air at United Nations”
- Watch: PLRC co-founder Hannah Davis provides closing remarks at the 2025 Keystone Symposium on Long COVID
- Read: BMJ, “Why scientists are rethinking the immune effects of SARS-CoV-2″
- Read: New NIH RECOVER study shows Long COVID incidence remains high and has not decreased overtime — Clinical Infectious Disease
- Read: The Sick Times, “Three clinical trials for Long COVID are testing JAK inhibitors to treat immune dysregulation”
- Register:3rd Long COVID International Conference 2025 in Boston, MA on November 19-20
- Register: 2nd International Conference on ME/CFS and Long COVID in Porto, Portugal on November 12–13
- Read: “Where are Trans Lives in Calls to Action?” by PLRC member JD Davids
- Read: Think Global Health, “From Long Flu to Long COVID: A Brief History of Postviral Illness”
- Read: The Sick Times, “Clinical trials are testing cancer drug rapamycin for Long COVID and ME”
Your donations support our work to conduct research and advocate for policies that enable patients to survive and thrive.
In solidarity,
Team PLRC
PS. Please reach out to team@patientledresearch.com to collaborate with our team or sponsor future Journals.