Patient-Led Research

@patientled
149 Followers
10 Following
94 Posts
We are a self-organized group of #LongCOVID patients and patients of associated illnesses such as #MECFS and #POTS working on #PatientLed research.
https://linktr.ee/patientled

In a new observational study by Akiko Iwasaki and David Putrino, higher HHV-6 viral shedding in saliva was linked to more severe Long COVID symptoms, including fatigue and pain.

The findings suggests herpesvirus reactivation may play a role in Long COVID and could point toward future targeted treatments.

On March 10, 2026, PLRC responded to the RECOVER-TLC Low-Dose Naltrexone (LDN) Treatment Trial decision to retain the proposed dosage and titration schedule despite public feedback recommending adjustments, including concerns about tolerability, weight-based pediatric dosing, and slower titration approaches for children and adolescents with Long COVID.

Link to the full letter in bio.

Low-Dose Sirolimus (Rapamycin) Clinical Trial

Check out our Instagram post here for more details:

https://www.instagram.com/p/DX-MTq4El3a/

Interest form link in bio.

New paper in Nature shows Long COVID receives just 14% of its disability commensurate funding from NIH.

Visit our Instagram for all the slides:
https://www.instagram.com/patientled

Check out the new #LongCOVID treatment guide from
PLRC & RTHM The guide features 24
medications, & select supplements, procedures, etc.
The guide aims to provide more clarity to patients &
clinicians around the evidence behind potential LC
treatments, in one place.

Link to guide: https://www.rthm.com/treatmentguide

@longcovid

"Study of 41k people finds long-lasting immune system dysregulation after COVID infection, particularly CD8+ T cells (which detect & kill virus-infected cells & cancerous cells).

Strong study - same patients compared pre, during, & after COVID. #LongCovid"

- ahandvanish (Twitter)

Visit our Instagram for all the slides:
https://www.instagram.com/patientled

Dr. Michael Peluso (UCSF) shares why the Patient-Led Research Collaborative is indispensable to Long COVID research and why patient leadership moves us closer to real treatments.

Now through Jan 1, 2026, all donations are matched up to $100K.

patientresearchcovid19.com/donate

Support science that keeps research patient-led and rooted in reality.

In 2025, the Patient-Led Research Collaborative advanced patient-centered science by publishing 14 research papers, engaging in clinical trials and pharmaceutical collaboration, strengthening advocacy efforts, expanding education for medical providers and more.

Our work is far from over.

Help us keep our impact rolling through 2026. Now through January 1, 2026, all donations will be matched up to $100,000, doubling the power of your support.

patientresearchcovid19.com/donate

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.

By meeting this goal PLRC will be able to sustain some of our vital day-to-day work through 2026.

This #GivingTuesday, we ask for your support as we continue to advance research that can improve the quality of life for all people with Long COVID.

Dr. Khan speaks with PLRC member, Scripps researcher and Principal Investigator of the LoCITT-T (pronounced ‘lock-it’) trial, Dr. Julia Moore Vogel, about the study using tirzepatide to treat moderate to severe Long COVID.

Listen to the full interview here:
https://www.youtube.com/watch?v=0WZyfudIV5U

Learn more about the study and see if you're eligible to participate:
https://longcovid.scripps.edu/