A call from patient-researchers to advance research on long COVID

Megan L Fitzgerald; Alison K Cohen; Toni Wall Jaudon; Julia Moore Vogel; Abigail N Koppes; Lucia Santos; Rachel Robles; Jerry Lin; J D Davids; Chris McWilliams; Signe Redfield; Kathleen P Banks; Maria Richardson; Teresa T Tindle Akintonwa; Beth Pollack; Ezra Spier; Aimee Weiss; Gina Assaf; Hannah Davis; Lisa McCorkell

doi:10.1016/j.cell.2024.09.011

A call from patient-researchers to advance research on long COVID

Cell. 2024 Oct 3;187(20):5490-5496. doi: 10.1016/j.cell.2024.09.011.

Authors

Megan L Fitzgerald¹, Alison K Cohen², Toni Wall Jaudon³, Julia Moore Vogel⁴, Abigail N Koppes⁵, Lucia Santos⁶, Rachel Robles⁷, Jerry Lin⁶, J D Davids⁸, Chris McWilliams⁹, Signe Redfield⁶, Kathleen P Banks¹⁰, Maria Richardson¹¹, Teresa T Tindle Akintonwa¹², Beth Pollack¹³, Ezra Spier⁶, Aimee Weiss⁶, Gina Assaf⁶, Hannah Davis⁶, Lisa McCorkell⁶

Affiliations

¹ Patient-Led Research Collaborative, Washington, DC, USA. Electronic address: fitzgerald.megan.lee@gmail.com.
² Patient-Led Research Collaborative, Washington, DC, USA; University of California, San Francisco, San Francisco, CA, USA.
³ Patient-Led Research Collaborative, Washington, DC, USA; University of Arkansas for Medical Sciences, Little Rock, AR, USA.
⁴ Patient-Led Research Collaborative, Washington, DC, USA; Scripps Research, La Jolla, CA, USA.
⁵ Patient-Led Research Collaborative, Washington, DC, USA; Northeastern University, Department of Chemical Engineering, Boston, MA, USA.
⁶ Patient-Led Research Collaborative, Washington, DC, USA.
⁷ Patient-Led Research Collaborative, Washington, DC, USA; Universität Bern, Bern, Switzerland.
⁸ Patient-Led Research Collaborative, Washington, DC, USA; Strategies for High Impact/Long COVID Justice, Detroit, MI, USA.
⁹ Patient-Led Research Collaborative, Washington, DC, USA; University of Bristol, Bristol, UK.
¹⁰ Patient-Led Research Collaborative, Washington, DC, USA; Boston University School of Public Health, Boston, MA, USA.
¹¹ Patient-Led Research Collaborative, Washington, DC, USA; Millions Missing México, Mexico City, Mexico.
¹² Patient-Led Research Collaborative, Washington, DC, USA; Black COVID-19 Survivors Alliance, Marietta, GA, USA.
¹³ Patient-Led Research Collaborative, Washington, DC, USA; Massachusetts Institute of Technology, Cambridge, MA, USA.

PMID: 39366339
DOI: 10.1016/j.cell.2024.09.011

Abstract

Long COVID is a chronic and often disabling illness with long-term consequences. Although progress has been made in the clinical characterization of long COVID, no approved treatments exist and disconnects between patients and researchers threaten to hinder future progress. Incorporating patients as active collaborators in long COVID research can bridge the gap and accelerate progress toward treatments and cures.

Keywords: long COVID; patient-led research; post-acute sequelae of COVID-19 (PASC).

MeSH terms

Biomedical Research
COVID-19* / epidemiology
COVID-19* / virology
Humans
Post-Acute COVID-19 Syndrome*
Research Personnel
SARS-CoV-2*