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Patient-Led Research Collaborative

@patientled

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We are a self-organized group of #LongCOVID patients and patients of associated illnesses such as #MECFS and #POTS working on patient-led research.
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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 us do this by making a donation, sharing our posts, and forwarding the emails you receive to folks in your network. Find the link to donate in our story and bio! 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, and have recently written about outcome selection and negative trial results. But we need to push the field further! Image descriptions: [Slide 1] PLRC is currently fundraising for two projects that will improve clinical trials and biomarkers. [Slide 2] 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. [Slide 3] 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. Continued in comments... by @patientled
8
2 months ago
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The Patient-Led Research Collaborative and the RTHM Clinic are excited to release the #LongCovid Treatment Guide. This guide is meant to spark meaningful conversations between patients and their clinicians about treatment options that could become part of a personalized care plan. The guide focuses on a set of 24 prescription medications, while including a limited number of supplements, over the counter medications, procedures, and lifestyle strategies for breadth. If you’d like a direct link to the guide, comment #guide below! Since there are no FDA-approved treatments for Long COVID, all pharmaceutical options are off-label, supported by clinical data, as well as patient and clinician expertise. One of our intentions was to gather this evidence all in one place so that patients and clinicians can make decisions informed by evidence. The Treatment Guide is not an exhaustive list, nor is it intended to serve as individualized medical advice. To support the use of listed treatments, we used both data from early clinical studies in Long COVID and data from infection-associated chronic conditions (IACCs) that are common in this patient population, such as postural-orthostatic tachycardia syndrome (POTS) and mast cell activation. Our decision to include a treatment was guided by existing evidence from the literature and the patient community, clinician expertise, as well as the Harvard/Stanford TREATME study organized by Dr. Martha Eckey, PharmD. We also prioritized listing treatments that were backed by other clinical treatment guides of other IACCs. Thus, the Treatment Guide is an evidence-based resource hub that can help inform clinicians and patients about treatments that could be tried today. We hope this resource can help patients evaluate the options available to them and can inform clinicians on the supporting evidence for off-label treatment options for Long COVID. "Long COVID Treatment Guide" in large dark blue font, the background consists of abstract line design and half of a large PLRC logo on the right. "rthm" logo and Patient-Led Research Collaborative multi-colored logo centered close to the bottom, "A Collaboration between Patient-Led Research Collaborative and RTHM" under the logos and an arrow pointing to the right below the text *"PLRC x RTHM Long COVID Treatment Guide" at the bottom of slides 2-6. by @patientled
1k
7 months ago
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For #LongCovid Awareness Day, we're releasing the 2026 Long COVID Fact Sheet! This is a list of key statistics about Long COVID, using recent data to reflect contemporary risks. We hope this will be useful for journalists, policymakers, patients, & others! Link in bio: https://patientresearchcovid19.com/2026-long-covi d-fact-sheet/ by @patientled
26
7 months ago
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The Long COVID Treatment Guide from PLRC and @rthm_health is now available in Spanish! ¡La guía de tratamiento para Long COVID elaborada por PLRC y la clínica RTHM, ya está disponible en español! The translated guide is also available in French and Portuguese! Find them on the PLRC website under Resources > Resources for Clinicians & Resources for Patients. Resources for Patients: https://patientresearchcovid19.com/resources-for-patients/ Resources for Clinicians: https://patientresearchcovid19.com/resources-for-clinicians/ by @patientled
5
3 days ago
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New publication from PLRC member Dr. Alison Cohen! Teachers faced some of the highest COVID-19 risks of any profession; higher rates of infection, hospitalization, death, and #LongCOVID compared to other jobs. In this new commentary, Alison and co-authors make the case for treating COVID-19 and Long COVID as occupational diseases for teachers. Their recommendations include investing in school ventilation and air purification, state legislation for cleaner indoor air in schools and workplace accommodations for teachers living with Long COVID such as phased returns and part-time options. Read the full piece here: https://journals.sagepub.com/doi/10.1177/10482911261481567 by @patientled
5
5 days ago
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Patient-Led Research Collaborative (PLRC) and RTHM Clinic recently released the Long COVID Treatment Guide to support more informed conversations between patients and their clinicians. The guide covers over 30 different treatments. Today, we’re highlighting GLP-1 receptor agonists, including tirzepatide and semaglutide, which are included as an emerging therapy and may be especially relevant for people with Long COVID who experience MCAS, fatigue, cognitive impairment, gastrointestinal issues, pain, headaches, autonomic symptoms, and food intolerances. GLP-1 receptor agonists should be discussed with a qualified clinician to determine whether they are appropriate for an individual case. This includes reviewing risks, contraindications, drug interactions, allergies, and potential side effects. The guide also notes that nausea and constipation are common because these medications slow gastric emptying and gastrointestinal motility. If you want a direct link to download the guide, comment #guide below, and we’ll send you a DM. Cover page titled GLP-1 Receptor Agonists from the Long COVID Treatment Guide by rthm Patient-Led Research Collaborative. by @patientled
54
17 days ago
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We're thrilled to see positive results from BioVie's clinical trial on bezisterim in #LongCovid! The drug benefited patients with high levels of fatigue, PEM &/or cognitive impairment, with multiple significant & trending results, including objective cognitive tests. This is a great example of what happens when trialists like BioVie listen to patients. Based on feedback from patient-researchers at PLRC & other orgs, the trial changed eligibility criteria for illness duration from a 2 year cap to include patients sick for longer. Because of this, the majority were ill for 2 years or more representing the patients most in need of treatment! The trial included 22 outcome measures, and chose ideal endpoints based on feedback from patient reps. This included endpoints that appropriately pick up on the types of cognitive dysfunction found in Long COVID, and that captured PEM. Patient feedback also led to the trial allowing patients to stay on existing medications such as LDN and reimbursed enrollees for travel and lodging. PLRC assisted on the advisory panel (thank you @lmccorkell & @yesezra), study design, and recruitment and communication for this trial, and the patient engagement in the process was outstanding. The trial completed enrollment in less than a year. This is an incredibly exciting development for the Long COVID field, and shows what is possible when trials choose innovative treatment candidates and are designed with patient expertise! by @patientled
11
18 days ago
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PLRC member Julia Moore Vogel (@juliamv_lc) was just featured in @smithsonianmagazine discussing her journey as a patient advocate and the work she has collaborated on with PLRC. "A researcher by nature and by training... Vogel’s boss, renowned molecular scientist Eric Topol, invited her to participate in a landmark scientific literature review of the existing research. The project gave Vogel the opportunity to collaborate with... an influential cohort of patients working as researchers, scientists and advocates known as the Patient-Led Research Collaborative (PLRC). The paper that collaboration yielded, 'Long Covid: Major Findings, Mechanisms and Recommendations,' published in Nature Reviews Microbiology in January 2023, has since been viewed online two million times, and it has been cited 4,000 times by other scientists, putting it in the top tier of academic papers published that year. Topol told Vogel that it’s among the most cited papers he has worked on during a celebrated five-decade career." Read the full article: https://www.smithsonianmag.com/innovation/many-americans-covid-still-chronic-disabling-disease-scientists-working-tirelessly-bring-them-relief-180989290/ by @patientled
8
22 days ago
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"New preprint from LoCITT-T describing our protocol and lessons learned. Link to preprint: https://www.medrxiv.org/content/10.64898/2026.08.19.26360832v1 Thank you to all LoCITT-T participants for their efforts and engagement, and to all caregivers who supported their participation." - PLRC member Dr. Julia Moore Vogel @juliamv_lc via Bluesky [Slide 2] The goal of this manuscript is to share how we are conducting the first fully-remote trial of an injectable drug, and to compare the enrollment timeline and cost to other clinical trials. We compared LoCITT-T baseline data to other Long COVID (LC) cohorts and found that our trial enrolled a more severely affected cohort. The next most severe trial (on a percentage difference basis) was Yale’s PAX-LC trial, which was also remote. [Slide 3] We enrolled 2.5x faster than the next fastest LC trial, & our cost per participant was less than 1/10th as NIH-funded LC clinical trials. We recognize trial procedures can have a significant impact on cost, & suggest that centralizing capabilities when possible can improve efficiency. We share operational lessons learned that other LC trials and digital/remote trials in general can build on, with thoughts on ways to decrease participant burden, clarify blinding expectations, and improve regulatory processes. [Slide 4] We polled stakeholders on their expected results of the trial. This can provide context when interpreting results. The mean and median predicted changes are near the limit of what we expect to be powered to detect. This manuscript is just beginning the peer review process; we wanted to share it at this stage so that others can build on these processes to conduct more inclusive, efficient, cost-effective trials. [Slide 5] For more details - read the preprint or attend a talk by Romina Foster-Bonds on Thursday at the ISLC-PAIS conference in Amsterdam (islc-pais.org). Patient Led Scorecard Results below. [Slide 6] Diagram displaying number of individuals at each stage from screening through initiating drug. by @patientled
3
a month ago
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Patient-Led Research Collaborative (PLRC) and RTHM Clinic recently released the Long COVID Treatment Guide to support more informed conversations between patients and their clinicians. The guide covers over 30 different treatments. Today, we’re highlighting low-dose transdermal nicotine patches, which may be especially relevant for people with Long COVID experiencing cognitive impairment or fatigue. Nicotine acts on nicotinic acetylcholine receptors, which play a role in neuronal communication. One proposed hypothesis suggests that SARS-CoV-2 may disrupt cholinergic signaling through its interaction with these receptors, potentially contributing to some Long COVID symptoms. Transdermal nicotine has also been studied for its effects on cognitive function, attention, memory, and inflammatory pathways. Current evidence is still limited, but a survey of 231 people with Long COVID using low-dose transdermal nicotine found that 73.5% reported improvement, with remission reported in approximately one-third of cases. In the Harvard/Stanford/OMF TREATME study, 43% of people with Long COVID who tried nicotine patches reported moderate to much better symptom improvement, though the Long COVID sample was small at seven participants. Low-dose nicotine patches should be discussed with a qualified clinician to determine whether they are appropriate for an individual case. This includes reviewing risks, contraindications, drug interactions, allergies, and potential side effects. The treatment guide is an evidence-grounded resource designed to support patients and clinicians in making informed decisions together. If you want a direct link to download the guide, comment #guide below, and we’ll send you a DM. Cover page titled 'Nicotine Patches' from a guide on supplements and OTC medications for Long COVID treatment by rthm. by @patientled
27
a month ago
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Dr. Copeland a researcher and person with ME/CFS, is sharing an opportunity to participate in a research study on ME/CFS and rest. The study is open to people with ME/CFS and medical or healthcare providers who are currently practicing or conducting research, and have had at least one patient or participant with ME/CFS. Here is a flyer for more information, and you can find the short survey at https://restandmecfs.com (link in bio). For any questions, please reach out to empwrtc@protonmail.com. Image descriptions: [Slide 1] 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". 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 (self or professionally diagnosed) or be A medical/healthcare provider who has worked with at 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 Pink Volunteer Recruitment Flyer. To participate you must be: Over the age of 18 AND Either have ME/CFS (self or professionally diagnosed) OR Be a medical/healthcare provider who has worked with at least one person with ME/CFS and is currently practicing or conducting research. Questions? Email Study Co-PI Victoria: empwrtc@protonmail.com. Continued in comments... 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". 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 (self or professionally diagnosed) or be A medical/healthcare provider who has worked with at 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 Pink Volunteer Recruitment Flyer. To participate you must be: Over the age of 18 AND Either have ME/CFS (self or professionally diagnosed) OR Be a medical/healthcare provider who has worked with at least one person with ME/CFS and is currently practicing or conducting research. Questions? Email Study Co-PI Victoria: empwrtc@protonmail.com. by @patientled
4
a month ago
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PLRC member @juliamv_lc just published a piece in The Lancet Infectious Diseases highlighting how quickly the clinical trial she and her team are leading completed recruitment. The Long COVID Treatment Trial Tirzepatide (LoCITT-T) recruited 1,000 people in less than two months — a feat many other trialists doubted was possible, as most trials this size take 1-3 years to complete recruitment. If other Long COVID clinical trials can learn from this, it could transform the the timeline to which an approved treatment arrives. "Another interesting aspect of this recruitment process is that we saw the biggest leap in enrollment not when the study was first announced, but after we hosted a webinar that included a live question and answer session. This suggests that hearing directly from the people behind the trial and having questions answered is an important component of trial recruitment, even in remote trials." Read the full piece here: https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(26)00070-8/fulltext Image descriptions: [Slide 1] Screenshot of The Lancet Infectious Disease article titled "Rapid recruitment for a remote long COVID clinical trial" by Julia Moore Vogel. Graph with text below that reads, "Figure Long COVID Treatment Trial Tirzepatide daily enrolment" [Slide 2] There have been few long COVID clinical trials relative to the burden of disease, and even fewer have been accessible to people with more severe illness. As a person who has had moderate-to-severe long COVID (depending on the day) since 2020, I have long advocated for at-home access to clinical trials. [Slide 3] Along with a wonderful team, I was thrilled to launch the Long COVID Treatment Trial Tirzepatide (LoCITT-T) in October, 2025... I had shared our goal to fully accrue the 1000-person study within 2 months and other trialists expressed the perception that I was, at best, being overly optimistic. Continued in comments. by @patientled
21
a month ago
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