October 24th, 2023
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Members of the Patient-Led Research Collaborative (PLRC) have co-authored a new preprint entitled “Impact of extended-course oral nirmatrelvir/ritonavir (Paxlovid) in established Long COVID: Case series and research considerations.” The paper is a case series of 13 individuals with Long COVID who initiated extended courses of oral nirmatrelvir/ritonavir (Paxlovid).
Alison Cohen, an epidemiologist on the faculty at the University of California San Francisco who is a PLRC member and the lead author of the report, explains, “My colleagues and I were hearing from people within the Long COVID community who were trying an extended course of Paxlovid and were reporting improvement in their Long COVID symptoms, either temporarily or for longer periods of time. Prior case series suggested that a 5-day course of oral Paxlovid benefits some people with Long COVID, within and outside of the context of an acute reinfection. Given how slowly research has been emerging on potential treatments for Long COVID, it seemed important to systematically document these cases to help increase knowledge.”
Lisa McCorkell, a co-founder of PLRC and a co-author of the report, adds, “To the best of our knowledge, this is the first case series of people with Long COVID who have attempted longer courses of Paxlovid.”
The case series documents the experiences of 13 individuals with Long COVID who tried extended courses of Paxlovid. Some participants who took a longer course of Paxlovid outside of an acute infection experienced a meaningful reduction in symptoms, with five people experiencing a sustained improvement. Among the two participants who took a long course of Paxlovid within the context of an acute reinfection, both eventually returned to their pre-reinfection baseline.
A major strength of this study is its grounding in patient-led approaches. Patients’ own descriptions of their experiences provide insights that may otherwise not be captured due to limitations in medical record systems, including inaccuracies in recording symptoms and variability in healthcare system contact. This is particularly the case with emerging illnesses such as Long COVID, which did not have its own ICD-10 diagnostic code until October 2021.
These cases contribute to a burgeoning body of research suggesting that at least some individuals may benefit from Paxlovid beyond the currently recommended window of treatment during an acute infection.
Michael Peluso, an infectious disease doctor on the faculty at the University of California San Francisco and a co-author of the report, says, “Detailed case studies like these are really helpful in driving forward the science – they provide rationale, based on patient experience, for rigorous randomized studies and they also provide clues as to what might be going on biologically.”
Relevant randomized clinical trials currently underway to study extended courses of Paxlovid among people with Long COVID include the Yale Paxlovid for Long COVID Trial and the RECOVER-VITAL trial.
“This case series confirms the urgency of research on possible treatment for the millions of people living with Long COVID, which disproportionately affects women and transgender people, low income people, and members of racialized minority groups,” explained JD Davids, co-director of Long COVID Justice, who is a PLRC member and a co-author of the report. “I encourage research funders, investigators and pharmaceutical companies to act on the urging of people with Long COVID to start and scale up trials of potential treatments, and to use best practices of recruitment and data analysis to ensure inclusion of groups bearing the highest burden of this disabling condition.”
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About Patient-Led Research Collaborative: Patient-Led Research Collaborative (PLRC) is a multi-disciplinary group of people with lived experience of Long COVID, formed together in April 2020 through the Body Politic COVID-19 Support Group, and were the first to conduct research on Long COVID. PLRC’s work thus far has resulted in the identification of key symptoms, timeline, comorbidities, and possible treatment options for Long COVID, as well as a $4.8 million fund for biomedical research with awards decided by patients, a publication of patient-generated hypotheses, and research into the impact of reinfections, identifying Long Covid phenotypes, Long Covid impact in LMIC countries, and others. They have presented their work to the World Health Organization, United States House of Representatives, National Institutes of Health, and Centers for Disease Control and Prevention, and have influenced Long COVID clinical guidelines and legislation. For more on PLRC, visit patientledresearch.com.