Hello! Welcome to Patient-Led Research Collaborative’s (PLRC) Quarterly Newsletter — this puHello! Welcome to Patient-Led Research Collaborative’s (PLRC) Quarterly Newsletter — this publication goes out four times a year to bring you the latest updates on PLRC’s work and critical updates on Long COVID and associated conditions.
This issue covers:
- Webinar: Results & Updates from Patient-Led Research Fund
- New Long COVID Clinical Trial
- PLRC Registry Launch
- New PLRF-Funded Study
If you have been forwarded this email and would like to continue to hear from us:
Webinar: Results from the Patient-Led Research Fund
Join us for a webinar to hear the results and latest progress from the 10 studies funded by the Patient-Led Research Fund (PLRF) — biomedical research projects selected by a panel of patient-researchers with both scientific expertise and lived experience of Long COVID and ME/CFS, organized by PLRC.
The webinar will take place from 10:00 am to 1:30pm PST / 1:00 pm to 4:30 pm ET.
Researchers set to present:
- An exploratory, randomized, double-blind placebo-controlled study to assess the safety of an anti SARS-CoV-2 monoclonal antibody – Dr. Michael Peluso, UCSF
- Unraveling the pathophysiology of post-exertional malaise in Long COVID and ME/CFS – Braeden Charlton, Vrije Universiteit Amsterdam
- Microbial metabolites as disease-modifying factors in Long-COVID – Dr. David Esteban, Vassar College
- Understanding the relationship between fibrin amyloid microclots and Long COVID – Dr. Caroline Dalton, Sheffield Hallam University
- Multi-omic approaches to solve post-acute COVID-19/SARS-CoV-2 Syndrome – MOSAICS – Prof. Alain Moreau, Université de Montréal
- Altered T cell responses in Long COVID and ME/CFS – Dr. Liisa Selin, University of Massachusetts
- Characterizing non-restorative sleep in post-viral disease to advance intervention innovations – Dr. Janet Mullington, Harvard Medical School
- A pre- and postoperative study of patients with ME/CFS operated for foraminal stenosis – Prof. Per Sjogren, Bragee ME Clinic, Stockholm
- Immune repertoire profiling of ME/CFS and Long COVID patients – Dr. Roshan Kumar, HiFiBio Therapeutics
- Systems biology approaches to uncovering disease mechanism and drug repurposing for Long COVID – Dr. Wenzhong Xiao, Massachusetts General Hospital
Call for Participants for a New Long COVID Clinical Trial, ADDRESS-LC:
PLRC has been committed to promoting patient-centered research and advocating for Long COVID treatments, for over 5 years. To that end, we are pleased to invite participants for a new Long COVID clinical trial, ADDRESS-LC, to help advance treatments for people with Long COVID. Your involvement could play an important role in medical research. Please note that participation would require 5 visits to one of the trial’s US sites.
By joining, you may have access to a new investigational treatment and help pave the way for new Long COVID treatments. The trial drug, Bezisterim (NE3107), is an investigational drug that may help reduce certain kinds of inflammation present in Long COVID that cause impaired cognition and fatigue. Please also note that the study is double-blind and placebo controlled.
Who can participate?
- 18 to 64 years of age
- Have brain fog and fatigue attributed to a COVID infection
- Have symptoms for at least 3 months, but not longer than 24 months
- See https://addresslongcovid.com/ for further eligibility details.
Please note that you may not be eligible if you:
- Were diagnosed with attention deficit hyperactivity disorder (ADHD) prior to the index COVID-19 infection
- Are currently taking or have received naltrexone within 30-days prior to the screening visit.
We invite you to contact a study site to determine if you’re eligible to join. More study sites will be added: [https://addresslongcovid.com/sites/]
PLRC Registry Has Launched!
We are excited to invite you to join the PLRC Registry, a user-friendly registry platform, designed by patients for patients, to connect people with clinical trials and research studies in Long COVID and associated conditions.
Whether you have Long COVID, another infection-associated chronic illness (IACI), or no chronic illness at all, you can join the PLRC Registry and help advance research on Long COVID.
Signing up is easy, and as a participant, you’ll have the option to:
— Receive updates on research studies and clinical trials you may qualify for.
— Share additional health data, including electronic health records.
By enrolling in the PLRC Registry, you’ll receive a short survey every three months about your Long COVID status, COVID-19 history, and other chronic conditions linked to infections. These insights will help patient-researchers understand Long COVID over time.
New PLRF Funded Study
A new study funded by the Patient-Led Research Fund has been announced from Rob Wüst and colleagues! The study found skeletal muscle from participants with Long COVID and ME/CFS differ from skeletal muscle from participants without these illnesses but that underwent bedrest. These findings suggest that physical inactivity alone does not explain the lower exercise capacity in Long COVID and ME/CFS.
The study compared whole-body exercise responses and skeletal muscle adaptations after strict 60-day bed rest in healthy people with those in patients with Long COVID and ME/CFS. They found bed rest to cause muscle atrophy, and reduced oxidative phosphorylation related to reductions in maximal oxygen uptake. Patients with Long COVID and ME/CFS did not have muscle atrophy, but had less capillaries, a higher proportion of glycolytic fibers, and showed evidence of mitochondrial dysfunction.
This research was part of our Patient-Led Research Fund (PLRF) funded by Balvi! You can see other projects here.
Thank you to Rob Wüst and team for continued incredible work! This is the kind of research that moves the field forward.
Read, Listen, Watch & More
- Read: New publication from PLRC member Janna Moen and Akiko Iwasaki, “Neuroimmune pathophysiology of Long COVID”
- Read: Washington Post, “Long covid patients are desperate for treatments. These trials may help”
- Read: The BMJ, “Patients with severe ME/CFS need hope and expert multidisciplinary care”, co-authored by PLRC co-founders Hannah Davis and Lisa McCorkell
- Read: The Sick Times, “’Long COVID Mode’: Seeing the crisis through games”
- Read: Yale Health Review, “A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles”
- Read: Harvard School of Public Health, “A long COVID researcher continues to search for answers”
- Read:Health Rising, “Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID”
- Read: The Sick Times, “Long COVID is increasing housing insecurity, but support programs fail to help”
- Read: New York Times, “Get Mad in Public, and 12 Other Ways to Save Health and Science”
- Read: Wall Street Journal, “How to Lead a Chronic Disease Revolution”
Your donations support our work to conduct research and advocate for policies that enable patients to survive and thrive.
In solidarity,
Team PLRC
PS. Please reach out to team@patientledresearch.com to collaborate with our team or sponsor future Journals.