Hello! 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:
- 2026 Long COVID Fact Sheet & International Long COVID Awareness Day
- Long COVID Treatment Guide & Op-Ed at The Sick Times
- Open Letter to the LDN RECOVER-TLC Pediatric Trial
- Clinical Trial Targeting Brain Fog & Fatigue –ADDRESS-LC
- Year-End Fundraiser Update
If you have been forwarded this email and would like to continue to hear from us:
Long COVID Fact Sheet & Awareness Day
For international Long Covid Awareness Day (LCAD), PLRC released the 2026 Long COVID Fact Sheet! This is a list of 18 key statistics about Long COVID, using recent data to reflect contemporary risks and the impact of the illness on health and quality of life of adults and children. We hope this will be useful for journalists, policymakers, patients, and others!
Key points include:
- Long COVID rates remain high, and reinfections increase the risk of developing Long COVID.
- Long COVID is one of the most common illnesses today in both adults and children, and the majority of Long COVID cases happen from “mild” acute infections.
- Recovery from Long Covid is rare, with 5-9% reporting recovery 2-3 years after infection.
- People with Long COVID experience severe functional limitations, poor quality of life, and severe fatigue at least as detrimental as many serious illnesses, including Parkinson’s disease and certain cancers.
You can find the 2026 Fact Sheet on our website, and corresponding
infographics here. Translations are already available in Portuguese, French and Korean, with more languages coming soon. If you’d like to translate this to another language, please email us at team@patientledresearch.com!
Other highlights from Long COVID Awareness Day Included:
- PLRC member Katie Drackert, who leads Clean the Air ATX, collaborated with the Long COVID Collective and successfully organized a petition for the city of Austin, Texas to recognize LCAD through a city proclamation. Katie also presented at the mayor’s committee for people with disabilities and made actionable recommendations. Her advocacy efforts were featured at The Sick Times.
- The Museum of Vancouver launched a virtual tour for the exhibition Living with Long COVID. The exhibition explores the ongoing impacts of Long COVID through lived experience, research and community collaboration. The virtual tour features the people who brought this exhibition to life: Kaylee Byers, Kayli Jamieson, Rackeb Tesfaye and Viviane Gosselin. In it, they share how the exhibition was developed and why it is vital to continue conversations about Long COVID.
Announcing The Long COVID Treatment Guide
We are excited to announce the Long COVID Treatment Guide! PLRC collaborated with RTHM Clinic over the past year to create a guide for patients to explore treatment options for Long COVID. The 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 Treatment Guide has 24 prescription medications, as well as select over the counter medications, procedures, and lifestyle tools. Note, it is not an exhaustive list, nor is it intended to serve as medical advice.
Treatments were selected using a combination of clinical study evidence–including from infection-associated chronic conditions, clinician experience and observed real-world effectiveness, and expertise of people with Long COVID. We prioritized treatment options from the Harvard/Stanford TREATME Study (organized by Dr. Martha Eckey) where at least 20% of participants with Long COVID reported moderate to substantial benefit.
PLRC co-lead Dr. LetíciaSoares and RTHM co-founder Dr. Jen Curtin published an op-ed in The Sick Times elaborating on the guide and the rationale behind it:
“Lack of medical education on the current evidence base is among the drivers of the Long COVID care crisis, and we hope this guide can play a small role in addressing it.. all treatments in the guide must be prescribed for off-label use… However, one in five prescriptions in the U.S. are already written for off-label use, and a growing body of smaller studies supports the use of many of these treatments.”
Letter in Response to RECOVER-TLC on Pediatric Trial Protocol:
PLRC has written a letter in response to the RECOVER-TLC Low-Dose Naltrexone (LDN) pediatric treatment trial decision to retain dosage and titration schedule, despite public feedback strongly recommending adjustments.
The current trial starts patients at 1.5mg — and our lived experience as patients, in addition to the recommendations by the ME/CFS clinician and expert consensus, indicate that medications should be initiated at lower dosages and slowly titrated up to avoid triggering drug sensitivities. In a recent preprint study of LDN in children with Long COVID that started a treatment regimen at 1.5 mg had 25% medication discontinuation attributed to side effects.
You can read the full letter here.
“We applaud RECOVER for targeting LDN as a treatment for Long COVID and for including children in this clinical trial. Many Long COVID patients have described LDN as ‘life-changing’— but there are still too many barriers to getting a prescription, especially for children and teenagers. However, without careful attention to the medication dosage, the results of this trial may be murky and drop-out rates may be high, and its benefit to the patient community will be minimized. We strongly recommend the RECOVER-TLC pediatric LDN trial to use the dose titration regimen recommended by the LDN research trust.”
Clinical Trial for Brain Fog and Fatigue
The ADDRESS-LC clinical trial for NE3107 (or Bezisterim) is still enrolling. If brain fog and fatigue from a COVID infection are affecting your daily life, this trial may be relevant for you.
All sites are open and enrolling. Consider participating while enrollment is still open.
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.
You may be compensated for reasonable travel expenses, including transportation to/from site and possible overnight accommodations dependent upon distance to site.
19 trial sites are now actively enrolling across the U.S. in the following cities: New York, NY; San Francisco, CA; Rochester, MN; New Haven CT; Columbus, GA; West Valley City, UT; Jacksonville, FL; Chicago, IL; Silver Spring, MD; Louisville, KY; Farmington Hills, MI; Palo Alto, CA; Seattle, WA; San Antonio, TX; Cleveland, OH; Aurora, CO; Iowa City, IA; Morgantown, WV
More people with Long COVID are eligible to participate.
Eligibility update:
- The trial is open to people living with Long COVID for over 2 years, including first wavers (people who have been sick since 2020).
- LDN: You may participate if you are taking low-dose naltrexone (4.5 mg or less per day).
- People with ADHD may participate if not being treated with stimulants.
- Up to 69-years-old: You may participate if you are less than 70 years old
We recommend you check eligibility and see if there’s a site near you.
Find more information at: https://addresslongcovid.com/sites/
Your participation helps advance research shaped by patient voices!
Year-End Fundraiser Update
Thanks to your incredible generosity, PLRC raised $165,000 from 240 donors for our end-of-year fundraiser!
Your support keeps our organization running and enables us to continue advancing patient-led Long COVID work, from research to advocacy and beyond. Will you consider making a gift today?
Together, we’ll ensure Long COVID remains a priority and that the voices of people living with Long COVID are heard and valued as we continue navigating this global health crisis.
Special thanks again to the Silver Giving Foundation and Lunardelli-McRee family for matching all gifts!
Read, Listen, Watch & More
- Read:UCSF, “Solving Long COVID: How Decades of HIV Research Paved the Way”
- Listen: Voices From the Land of Long Covid, a spoken-word album of poetry and music, created by people who are living with Long Covid. 100% proceeds go to PLRC
- Read: The Sick Times, “Reasons to Mask in 2026” illustrated comic and Korean Translation by PLRC member Sanghoon Bae.
- Read: Bloomberg, “How Covid Quietly Rewires the Brain”
- Listen: Listening for the Long Haul, an oral history project created by Long COVID Justice in partnership with History Moves at University of Illinois-Chicago sharing over 20 oral history interviews from people with Long COVID
- Register: ME/CFS Advocacy Week, a medical education initiative led by Solve M.E. & #MEAction from March 23-27, 2026.
- Read: World Health Organization (WHO), “Myth-busters: debunking Long COVID myths and misconception”
- Read: The Sick Times, “Maryland considers Long COVID innovation bill”
- Register:The Long Covid Science and Society Symposium, Columbia University in New York City on April 20, 2026
- Read: Counter Disinformation Project, “How the Covid Disinformation Ecosystem was established”
- Read: After COVID: The Health Impacts That Will Last Generations, by Jason Gale
- Listen: A Friend for the Long Haul, “How Covid Long Haulers Build Community” with PLRC member Kathleen Banks
- Read: The Spokesman-Review, “Six years later, COVID symptoms linger for many Latino farmworkers in Washington”
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.