Patient-Led Research Collaborative

@patientled

Patient-Led Research for #LongCovid!

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Patient-Led Research Collaborative@patientled· 6d

Donate: patientresearchcovid19.com/donate/

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?

Patient-Led Research Collaborative@patientled· 6d

"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

Patient-Led Research Collaborative@patientled· 6d

"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

Patient-Led Research Collaborative@patientled· 6d

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.

Patient-Led Research Collaborative@patientled· 6d

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.

Patient-Led Research Collaborative@patientled· 6d

PLRC is wrapping up our summer fundraiser and want to thank everyone who has supported so far! There's still time to give. Your support helps us continue addressing the #LongCovid questions patients care most about. Donate: patientresearchcovid19.com/donate/

Your support helped 50,000 people
access treatment information

Patient-Led Research Collaborative@patientled· 13d

Donate: patientresearchcovid19.com/donate/

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?

Patient-Led Research Collaborative@patientled· 13d

"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

Patient-Led Research Collaborative@patientled· 13d

"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

Patient-Led Research Collaborative@patientled· 13d

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

Patient-Led Research Collaborative@patientled· 13d

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.

Patient-Led Research Collaborative@patientled· 13d

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.

Patient-Led Research Collaborative@patientled· 13d

PLRC is continuing our summer fundraiser to help sustain our work and fund new projects that will improve clinical trials and biomarkers! You can help us by donating, sharing our posts, & forwarding emails you receive to folks in your network 🧵 Donate: patientresearchcovid19.com/donate/

Three Research Projects PLRC Can Finish With Your Help.

Patient-Led Research Collaborative@patientled· 22d

Donate: patientresearchcovid19.com/donate/

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?

Patient-Led Research Collaborative@patientled· 22d

"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

Patient-Led Research Collaborative@patientled· 22d

"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

Patient-Led Research Collaborative@patientled· 22d

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.

Patient-Led Research Collaborative@patientled· 22d

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.

Patient-Led Research Collaborative@patientled· 22d

PLRC is kicking off a summer fundraiser to help sustain our work and fund new projects that will improve clinical trials and biomarkers! You can help by donating, sharing our posts, and forwarding the emails you receive to folks in your network.🧵 Donate: patientresearchcovid19.com/donate/

PLRC is currently fundraising for two projects that will improve clinical trials and biomarkers.

Patient-Led Research Collaborative@patientled· May 18

In this Project ECHO Long Covid Webinar Series, PLRC co-lead @loscharlos.bsky.social talks to Dr. Alba Azola about the evidence suggesting some #LongCovid patients may have undiagnosed vascular compression. Dr. Azola estimates about 15% of LC patients may have some form of vascular compression.

Patient-Led Research Collaborative@patientled· May 5

PLRC co-lead @leticiasaurus.bsky.social recently presented on the state of #LongCovid clinical trials — and shared that findings from many trials remain inconclusive due to limitations in study design, most notably the widespread failure to account for post-exertional malaise (PEM).

Patient-Led Research Collaborative@patientled· May 2

This ep of “A Friend for the Long Haul” features PLRC member @kpbanks.bsky.social (DrPH) She describes a study where non-English speakers reported new health symptoms but hadn’t realized they were connected to their COVID infection, largely because information wasn’t available in their language.

Patient-Led Research Collaborative@patientled· Feb 12

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!

cheery pink background with white and green pills in the foreground

Patient-Led Research Collaborative@patientled· Feb 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

Patient-Led Research Collaborative@patientled· Dec 31

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...

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"

Patient-Led Research Collaborative@patientled· Dec 2

"Patient-Led Research Collaborative, an organization that has elevated the voice and expertise of those who experience this illness, has been raising funds & directing them to promising research projects — & punching far above its weight." — NY Times patientresearchcovid19.com/donate/

"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

Patient-Led Research Collaborative@patientled· Dec 2

By meeting this goal PLRC will be able to sustain some of our vital day-to-day work through 2026. Please consider donating & sharing this campaign so we can keep advancing research to improve the lives of people with #LongCovid.

"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

Patient-Led Research Collaborative@patientled· Dec 2

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/

Patient-Led Research Collaborative@patientled· Aug 19

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”

Patient-Led Research Collaborative@patientled· Jul 14

Contact a study site to determine if you're eligible. More US study sites will be added over the next few months. 🔗 addresslongcovid.com/sites/ 3/