The Patient-Led Research Collaborative (PLRC) is a group of people from multiple disciplines who have lived experience with Long COVID. In a November 2022 press release, the PLRC’s Patient-Led Research Fund announced it had awarded $4.8 million to nine (9) studies investigating causes of and treatments for Long COVID and related conditions.*

Project awardees

“Clinical trial on Low-dose naltrexone for the treatment of Long-COVID and ME/CFS”, the University of Alabama at Birmingham’s Neuro-inflammation, Pain and Fatigue Laboratory. This clinical trial tests the safety and effectiveness of low-dose naltrexone (a drug commonly used to block opioid cravings) for treating Long COVID and ME/CFS. Early research on low-dose naltrexone shows promise for calming microglial cells (immune cells in the brain) and reversing brain inflammation.

“Microbial metabolites as disease-modifying factors in Long-COVID”, Vassar College. Normally, human gut microbes produce compounds from tryptophan that enter cells and activate the AhR receptor, controlling inflammation. In disease, AhR may be less available. This study will examine AhR production and dynamics in people with Long COVID. The findings will provide insight into gut balance, immune dysfunction, and brain inflammation in post-infectious illness.

“Unraveling the pathophysiology of post-exertional malaise in Long COVID and ME/CFS”, Amsterdam University Medical Centers. This post-exertional malaise (PEM) study will analyze muscle and blood samples during PEM episodes, providing deeper knowledge of how PEM develops, including the newly found muscle/blood biomarkers. The findings will benefit future treatment research.

“Characterizing non-restorative sleep in post-viral disease to advance intervention innovations”, Harvard Medical School and the Open Medicine Foundation-Supported Ronald G. Tompkins Harvard ME/CFS Collaboration. The study will compare sleep regulation in people with Long COVID and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) versus healthy controls matched by age and sex.

“A pre- and postoperative study of patients with ME/CFS operated for foraminal stenosis”, Bragee ME Clinic, Stockholm. In previous research with ME/CFS patients, they observed that many had spinal narrowing and obstructions at the neck-skull junction, neck pain, and other spinal issues. This study will see whether surgery to correct these issues can also positively impact other aspects of their ME/CFS.

“Altered T cell responses in Long COVID (PASC) and ME/CFS”, University of Massachusetts Chan Medical School. The researchers hypothesize that Long COVID and ME stems from exhausted CD8 T (immune) cells and immune dysregulation as a result of infection. The study will closely examine T cells in Long COVID and ME/CFS patients, as well as reactivated herpesviruses with respect to the findings.

“Systems Biology Approaches to Uncovering Disease Mechanism and Drug Repurposing for Long COVID”, Massachusetts General Hospital and the Open Medicine Foundation-Supported Computational Research Center for Complex Diseases. Incorporating known diseases and drugs, the study will use machine learning to analyze comprehensive data on Long COVID, ME/CFS, and associated conditions to find underlying genes and drug candidates for repurposing.

“Understanding the relationship between fibrin amyloid microclots and Long COVID”, Consortium of UK and South African universities. This study will investigate microclots in the blood related to Long COVID and associated illnesses. A test for microclots will be developed and evaluated for its diagnostic ability. Microclot patient burden, dynamics, and infection and vaccination’s impact on microclots will also be examined.

“Multi-omic approAches to Solve post-Acute COVID-19/SARS-CoV-2 Syndrome – MOSAICS”, at the Université de Montréal and the Open Medicine Foundation-Supported ME/CFS Collaborative Center at CHU Sainte-Justine/Université de Montréal. The scientists hypothesize that Long COVID and related conditions result from molecular reorganization at the genetic expression level. The study aims to understand these conditions’ underlying molecular processes.

More information on the Patient-Led Research Fund can be found here. Questions can be directed to team@patientledresearch.com.

*Patient-Led Research Collaborative Announces $4.8 Million in Biomedical Research Awards for Long-COVID and Associated Conditions Patient-Led Research Collaborative [Press release]. (2022, November 22). Patient-Led Research Collaborative. https://patientresearchcovid19.com/press-releases