Patient-Led Research Collaborative

@patientled.bsky.social

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Patient-Led Research for #LongCovid! http://patientledresearch.com

Your support will help us get The Long COVID Treatment Guide into the hands of the clinicians and patients looking for answers. Will you make a contribution to help us reach 100,000 people by the end of the summer?
"In our medical education work with clinicians, we understood that the greatest barriers are a lack of awareness about available treatment options, and a comprehensive resource to refer to. We recognized the need for a guide tailored for clinicians with limited time and for patients with limited energy and cognitive impairment." — Charlie McCone, PLRC co-lead
"As someone living with Long COVID, I know first hand the power of finding relief. I found two off-label meds in this guide that took me from bed-bound to mostly housebound, which gave me the will to keep living and fighting for better care for patients. I believe we all have the right to try these medications as I did, and your support makes that potential possible." — Charlie McCone, PLRC co-lead
Three months since its release, the Treatment Guide has already reached 50,000 people! This work is supplemental to our focus on advancing clinical trials — working towards FDA-approved medications to treat Long COVID. However, for the millions of patients suffering now, we believe the current evidence base is robust enough to warrant off-label access today and they shouldn’t have to wait years to receive the care they need.
Earlier this year PLRC released the Long COVID Treatment Guide to help patients discuss potential treatment options with their clinicians. This was developed over the course of a year in collaboration with RTHM Clinic; the treatment guide includes 24 prescription medications, as well as a handful of other procedures and supplements.
Your support helped 50,000 people access treatment information
We remain committed to developing patient-led research that can support Long COVID clinical trials in the long run. With your support, we'll continue to address the questions patients care about. Will you make a contribution so we can finish these three critical projects?
"PLRC was born from a community of people driven to transform their lived experiences with non-recovery from COVID-19 into data to propel the once nascent field of Long COVID research. Over the years, PLRC continued to carry on patient-led research that applies unique integration of lived-experience knowledge and expertise." — Letícia Soares, PLRC co-lead
"We hold unique datasets, collected by patients, from patients, on questions patients care about and believe could offer real insight into the disease. PLRC members have developed studies addressing research questions of high priority to people with Long COVID, from first characterization of symptoms and reproductive health issues, to health outcomes associated with reinfections and patient phenotyping." — Letícia Soares, PLRC co-lead
3. Analyzing patient-designed registry data: Why: Little is known about the long-term prognosis of Long COVID, but recovery rates are reportedly low. Even less is known about rates of relapse after a phase of remission, which is critical considering SARS-CoV-2 reinfections and the relapse-remission nature of Long COVID. What: The goal of this study is to track Long COVID status over time to determine rates of remission and relapse, and understand the factors associated with recovery, remission and relapses. Impact: This will allows us to study and characterize factors associated with relapses and remissions, and variation in functional capacity
2. Evaluation of a Patient-Led Research Funding (PLRF) Model. Why: Through PLRF, patients with scientific backgrounds and experience living with Long COVID directed nearly $5 million in donor-provided funds to support 10 biomedical studies. This resulted in major advances in the field, including the first monoclonal antibody clinical trial in Long COVID and a study describing amyloid microclots in the skeletal muscle during PEM. What: We are assessing the experiences of researchers who were awarded by the fund and patients who participated in the PLRF to learn from the success of this funding model. Impact: By treating the PLRF as a successful model for how patients can participate in decisions about funding, we hope to promote patient decision-making in research funding.
1. Mapping research needs in myalgic encephalomyelitis prodrome disease. Why: The prodrome is a phase of non-specific signs and symptoms lasting months to years before diagnostic criteria are met. ME prodrome characterization has been seldom documented, including in Long COVID. What: Our patient-led review aims to map existing characterizations, research gaps, and healthcare implications of the ME prodrome. Impact: Understanding the myalgic encephalomyelitis (ME) prodrome could improve clinical and self-management and help prevent functional decline.
Three Research Projects PLRC Can Finish With Your Help.
We know how difficult it is to remain hopeful, but we believe the next few years will show massive leaps in these areas. Will you make a contribution so we can keep pushing research for clinical trials and biomarkers forward together?
"In addition to these projects, we will continue our ongoing clinical trial and treatment work — including collaborating with the FDA/CURE-ID to identify which already-approved, repurposed drugs help (or don’t help) people with Long Covid, and continuing to advise organizations running clinical trials, including RECOVER-TLC, to strengthen their trial design and treatment selections." — Hannah Davis, PLRC co-lead
"Six years into the pandemic — and for many of us, this illness — clinical trials, diagnostics, and treatments are the top priority. We know that Long COVID is not mysterious, there are hundreds of documented abnormalities associated with disease, and the time has come to strengthen clinical trials, biomarkers, and treatment identification. PLRC has been working on advancing clinical trials for years, but we need to push the field further." — Hannah Davis, PLRC co-lead
2. Most debilitating symptoms in Long COVID Why Despite an enormous amount of research on Long COVID symptom frequency, almost no research has been done on which symptoms patients find the most debilitating. This leads to researchers designing studies that confound the uniqueness of symptoms with debilitation. What We have a dataset of over 4,000 patients each ranking their most debilitating symptoms. We would like to clean, analyze, and publish this data. Impact This data will help us to know which symptoms to focus on when choosing clinical trial drug candidates, as well as appropriate endpoints and outcome measures.
1. At-home biomarkers of post-exertional malaise (PEM) Why PEM is one of the most debilitating components of Long Covid, and one of the hardest states to measure. What A decentralized study of at-home PEM biomarkers — using wearable devices measuring relevant markers like lactate, cerebral blood flow, glucose, and muscle oxygenation — to test whether PEM can be detected and quantified. Impact A biomarker for PEM offers researchers an objective clinical trial endpoint, and additionally flags when PEM is confounding other tests or imaging results.
PLRC is currently fundraising for two projects that will improve clinical trials and biomarkers.
Screenshot of a zoom conversation between two people discussing vascular compression. The video is surrounded by grey background with captions and a PLRC logo.
Screenshot of a video presentation with captions listed at the bottom of the screen.
A video segment from a podcast clip with black text over a grey background that includes a screenshot of the podcast episode title “How Covid Longhaulers Build Community”
cheery pink background with white and green pills in the foreground
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.
Purple background with white and yellow text that reads: "Some highlights of PLRC’s impact since 2020, •50 Publications •10,000+ Citations •$5 Million Raised for 10 Biomedical Studies •158+ Research Collaborators •7 Project ECHO Presentations since 2023"
"The Patient-Led Research Collaborative, an organization that has elevated the voice and expertise of those who experience this illness, has been raising funds and directing them to promising research projects — and punching far above its weight." — The New York Times
"Some highlights of PLRC’s impact since 2020, •50 Publications •10,000+ Citations •$5 Million Raised for 10 Biomedical Studies •158+ Research Collaborators •7 Project ECHO Presentations since 2023"
"Some highlights of PLRC’s impact since 2020, 50 papers published, 18 led by PLRC." Below the text is a chart with 2 columns, "Year" and "# of Publications." 2020 | 1 2021 | 4 2022 | 5 2023 | 11 2024 | 13 2025 | 16 Total | 50
PLRC logo on the top left, large decorative PLRC logo on the white background, text in the middle on a purple background that reads, "YOUR GIFT GOES TWICE AS FAR (in white font), We're thrilled to announce that thanks to two generous donors, all donations made to PLRC will be matched up to $100K through January 1. (in black font with gold highlight), patientresearchcovid19.com/donate (at the bottom in blue)
A screenshot of Keystone's Symposia livestream with Hannah Davis (white person, standing on a podium with a black mask) speaking to a room of researchers, clinicians and stakeholders offscreen. There are two people to her left supporting the livestream and conference. The video occasionally transitions to a screensaver of the conference.
site map with sites located in Silver Spring, MD — DMV area, Jacksonville, Florida, Farmington, MI, Dallas TX, and Columbus, GA
site map with sites located at Silver Spring, MD — DMV area, Jacksonville, Florida, Farmington, MI, Dallas TX, Columbus, GA
infographic on the PLRF with an address to register at bit.ly/PLRF-2025
screenshot of google maps, showing site locations in Silver Spring, MD, Jacksonville, FL, Farmington, MI, Dallas, TX, and Columbus, GA
"I’m grateful for PLRC’s unwavering leadership and scientific rigor in Long COVID participatory action research, and looking forward to growing use of PLRC’s Patient-Led Research Scorecards.” – Dr. Kelly O’Brien, Professor in the Department of Physical Therapy, at the University of Toronto, Applying Dynamic Disability.
PLRC has changed the landscape of patient engagement in research, merging patients’ lived and scientific expertise to produce global breakthroughs. Collaborating with PLRC and a diverse scientific team on a project on Long Covid in Brazil has taught me what a disability-justice-informed research project can be, and how to centre patients’ experience and needs to produce really grounded recommendations.” – Dr. Flora Cornish, Professor in Research Methodology at the London School of Economics and Political Science.
Over the past five years, PLRC has sounded the Clarion call for truth about the disease state of Long COVID. Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID. In designing our NIH-funded clinical trial of immunomodulation for Long COVID, we were greatly edified by leaders of PLRC, who helped us hone our research design…PLRC, to you I raise a toast and wish you a happy fifth birthday." – Dr. E. Wesley Ely, MD, Professor of Medicine & Critical Care at Vanderbilt University Medical Center.
Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research. The deep alliance between clinician-researchers and patient-researchers from the earliest days of the pandemic has been one of the most important drivers of progress in this field, and is a major motivator for me personally to focus on studying diseases like Long COVID.” – Dr. Michael Peluso, Assistant Professor of Medicine at the University of California, San Francisco
PLRC has been a transformational force in Long Covid. These people are my heroes and I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the original PLRC survey and stories from PLRC members made us pursue Long Covid research and advocacy. The work done by PLRC galvanised a lot of progress over the past 5 years–progress on every front from increasing awareness and understanding of Long Covid, to research, improved clinical care, and advocacy. I have huge admiration for each and every one of them and am eternally grateful for what they have done.” – Dr. Ziyad Al-Aly, Chief of Research and Development Service, VA St. Louis Health Care System
banner with pastel colors that says "Patient-Led Research Collaborative 5th anniversary - you can sustain long covid patient-led work when it's needed most!" with a link to bit.ly/plrc-donate
chart showing interconnected issues resulting in insufficient access and care of Long Covid in Brazil
An image with the PLRC logo and large text that says "Community Webinar 2024", with the time and link to register.