mastodon 4.8.0-nightly.2026-10-06We are a self-organized group of #LongCOVID patients and patients of associated illnesses such as #MECFS and #POTS working on #PatientLed research.
https://linktr.ee/patientled
In a new observational study by Akiko Iwasaki and David Putrino, higher HHV-6 viral shedding in saliva was linked to more severe Long COVID symptoms, including fatigue and pain.
The findings suggests herpesvirus reactivation may play a role in Long COVID and could point toward future targeted treatments.
Check out the new #LongCOVID treatment guide from
PLRC & RTHM The guide features 24
medications, & select supplements, procedures, etc.
The guide aims to provide more clarity to patients &
clinicians around the evidence behind potential LC
treatments, in one place.
Link to guide: https://www.rthm.com/treatmentguide
"Study of 41k people finds long-lasting immune system dysregulation after COVID infection, particularly CD8+ T cells (which detect & kill virus-infected cells & cancerous cells).
Strong study - same patients compared pre, during, & after COVID. #LongCovid"
- ahandvanish (Twitter)
Visit our Instagram for all the slides:
https://www.instagram.com/patientled
New paper in Nature shows Long COVID receives just 14% of its disability commensurate funding from NIH.
Visit our Instagram for all the slides:
https://www.instagram.com/patientled
On March 10, 2026, PLRC responded to the RECOVER-TLC Low-Dose Naltrexone (LDN) Treatment Trial decision to retain the proposed dosage and titration schedule despite public feedback recommending adjustments, including concerns about tolerability, weight-based pediatric dosing, and slower titration approaches for children and adolescents with Long COVID.
Link to the full letter in bio.
A new NIH funded EHR study from RECOVER looking at five different models found that #LongCovid incidence has not decreased over time, contrary to common belief. The authors note, "Our findings indicate that preventing and mitigating long COVID remains a public health priority."
Article link:
https://academic.oup.com/cid/article-abstract/80/6/1247/8002322
Dr. Michael Peluso (UCSF) shares why the Patient-Led Research Collaborative is indispensable to Long COVID research and why patient leadership moves us closer to real treatments.
Now through Jan 1, 2026, all donations are matched up to $100K.
patientresearchcovid19.com/donate
Support science that keeps research patient-led and rooted in reality.
We're thrilled to announce that thanks to two generous donors, the Silver Giving Foundation and Lunardelli-McRee family, all donations made to PLRC will be matched up to $100K through January 1 of next year.
By meeting this goal PLRC will be able to sustain some of our vital day-to-day work through 2026.
This #GivingTuesday, we ask for your support as we continue to advance research that can improve the quality of life for all people with Long COVID.
In 2025, the Patient-Led Research Collaborative advanced patient-centered science by publishing 14 research papers, engaging in clinical trials and pharmaceutical collaboration, strengthening advocacy efforts, expanding education for medical providers and more.
Our work is far from over.
Help us keep our impact rolling through 2026. Now through January 1, 2026, all donations will be matched up to $100,000, doubling the power of your support.
patientresearchcovid19.com/donate
The Sick Times’s obituary honors Alice Wong, a fearless disability rights advocate and devoted supporter of people with Long COVID.
Link in bio:
https://thesicktimes.org/2025/11/15/alice-wong-disability-activist-and-luminary-dies-at-51/
Visit our Instagram for all the slides:
https://www.instagram.com/patientled
Powerful closing remarks from PLRC co-founder Hannah Davis @ahandvanish@a.weirder.earth at the Keystone Symposia #LongCOVID last week, reflecting on the state of research and the journey of the patient community.
A new article from Think Global Health features PLRC co-lead Letícia Soares on the cover, and dives in the historical pattern of illnesses similar to #LongCOVID.
Article link here and in bio:
https://www.thinkglobalhealth.org/article/long-flu-long-covid-brief-history-postviral-illness
Visit our Instagram for all the slides:
https://www.instagram.com/patientled
Dr. Khan speaks with PLRC member, Scripps researcher and Principal Investigator of the LoCITT-T (pronounced ‘lock-it’) trial, Dr. Julia Moore Vogel, about the study using tirzepatide to treat moderate to severe Long COVID.
Listen to the full interview here:
https://www.youtube.com/watch?v=0WZyfudIV5U
Learn more about the study and see if you're eligible to participate:
https://longcovid.scripps.edu/
NEW PAPER: A patient-engaged study reveals significant gaps in Brazil's universal health system (SUS) for people with #LongCovid. Co-authored by PLRC researchers, the study followed patients up to 2 years after COVID hospitalization.
Link also in bio:
https://equityhealthj.biomedcentral.com/articles/10.1186/s12939-025-02635-8
Visit our Instagram for all the slides:
https://www.instagram.com/patientled
❗New study shows children reinfected with COVID have double the risk of getting Long COVID❗
This week the New York Times highlighted a new study that provides evidence that children who experience repeat SARS-CoV-2 infections face a higher risk of developing Long COVID, even if their earlier infections were mild or they were vaccinated. The study was run by NIH's RECOVER initiative and published in The Lancet Infectious disease.
Visit our Instagram for all the slides:
https://www.instagram.com/patientled
PLRC co-founder Hannah Davis at #KeystoneSymposia giving a presentation on Craniocervical Instability & #LongCovid illness duration.
Visit our Instagram for all the slides:
https://www.instagram.com/patientled
PLRC member Catherine Romatowski speaks with Th Sick Times about both the promise of rapamycin and her experience using it for #LongCOVID and #MECFS.
Article link here and in bio:
https://thesicktimes.org/2025/07/29/clinical-trials-are-testing-cancer-drug-rapamycin-for-long-covid-and-me/
Visit our Instagram for all the slides:
https://www.instagram.com/patientled
PLRC is kicking off a summer fundraiser to help sustain our work and fund new projects that will improve clinical trials and biomarkers! You can help us do this by making a donation, sharing our posts, and forwarding the emails you receive to folks in your network. Find the link to donate in our story and bio!
Check out our Instagram post here for more details:
https://www.instagram.com/p/DbByCTHknGJ/?img_index=1
Low-Dose Sirolimus (Rapamycin) Clinical Trial
Check out our Instagram post here for more details:
https://www.instagram.com/p/DX-MTq4El3a/
Interest form link in bio.
PLRC member Michael Sieverts shares his
clinical trial experience with the Sick Times.
Visit our Instagram for all the slides:
https://www.instagram.com/patientled