USA: News from Patient-Led Research Collaborative

[ahimsa]

I wasn't sure where to put the news about this group's July 9 webinar. So I created a new thread for the Patient-Led Research Fund organization. Please move this post if it belongs elsewhere.

Website for Patient-Led Research Collaborative

Linktree for Patient-Led Research Collaborative

Webinar information, from a post on Mastodon:

Patient-Led Research Fund
Webinar 2025 | Aligning community needs with research priorities

Come see the results and latest progress from the 10 studies funded by the Patient-Led Research Fund — biomedical research projects selected by a panel of patient-researchers with both scientific expertise and lived experience of Long COVID and/or ME/CFS.

Wednesday, July 9

10:00 am - 1:30 pm PT
1:00 pm - 4:30 pm ET

Registration link for webinar

 

[ahimsa]

Coverage of the July 9 webinar from The Sick Times:

Live blog: Following the Patient-Led Research Fund summer 2025 webinar

 

[SNT Gatchaman]

July 9 Webinar (3 hour 20 min)

Research Items —

13:10 - Braeden Charlton, PhD - Skeletal Muscle Abnormalities in Long COVID
25:45 - Caroline Dalton, PhD - Fibrinaloid microclot quantification in plasma from people with Long COVID and ME/CFS
42:20 - Liisa Selin, MD, PhD - Altered T cell responses in Long COVID (PASC) and ME/CFS
57:25 - David Esteban, PhD - Alterations in tryptophan metabolism in the gut microbiome of people with ME/CFS and Long COVID
1:11:00 - Megan Fitzgerald, PhD - Nothing for us without us: aligning research funding with patient priorities
1:24:25 - Roshan Kumar, PhD - T cell dysregulation revealed by single-cell profiling of ME/CFS and Long COVID patients
1:38:35 - Per Sjögren, MD& Bo C Bertilson, MD - Surgery for foraminal stenosis in ME/CFS
1:55:20 - Wenzhong Xiao, PhD - Systems Biology Approaches to Uncovering Disease Mechanism and Drug Repurposing for Long COVID
2:16:55 - Alain Moreau, PhD - Epigenomics of Long COVID: Insights, Breakthroughs, and Emerging Hope.
2:31:50 - Janet Mullington, PhD - Characterizing non-restorative sleep in post-viral disease to advance intervention innovations
2:47:53 - Michael Peluso, MD - Monoclonal antibodies in Long COVID: what needs to happen next

 

[Jaybee00]

Very exicited to be heading to Keystone Symposium on #LongCovid in Santa Fe to represent @patientled !Aside from leading researchers, there will be good # of pharma (Pfizer, J&J), & handful NIH folks.Send me any questions / intel requests / asks & will read by Sunday!

Anyone on X who could tweet or DM Charlos to ask him to ask JNJ to fund the phase 2 Dara trial in Norway?

Thanks

@Dakota15

 

[Dolphin]

July 9 Webinar (3 hour 20 min)



Research Items —

13:10 - Braeden Charlton, PhD - Skeletal Muscle Abnormalities in Long COVID
25:45 - Caroline Dalton, PhD - Fibrinaloid microclot quantification in plasma from people with Long COVID and ME/CFS
42:20 - Liisa Selin, MD, PhD - Altered T cell responses in Long COVID (PASC) and ME/CFS
57:25 - David Esteban, PhD - Alterations in tryptophan metabolism in the gut microbiome of people with ME/CFS and Long COVID
1:11:00 - Megan Fitzgerald, PhD - Nothing for us without us: aligning research funding with patient priorities
1:24:25 - Roshan Kumar, PhD - T cell dysregulation revealed by single-cell profiling of ME/CFS and Long COVID patients
1:38:35 - Per Sjögren, MD& Bo C Bertilson, MD - Surgery for foraminal stenosis in ME/CFS
1:55:20 - Wenzhong Xiao, PhD - Systems Biology Approaches to Uncovering Disease Mechanism and Drug Repurposing for Long COVID
2:16:55 - Alain Moreau, PhD - Epigenomics of Long COVID: Insights, Breakthroughs, and Emerging Hope.
2:31:50 - Janet Mullington, PhD - Characterizing non-restorative sleep in post-viral disease to advance intervention innovations
2:47:53 - Michael Peluso, MD - Monoclonal antibodies in Long COVID: what needs to happen next

Read our latest Solve Science Spotlight summaries of presentations made at a recent Patient-Led Research Collaboration (PLRC) conference

PLRF Event Highlights Promising ME/CFS & Long Covid Biomedical Research Projects - Solve ME/CFS Initiative

Read our Solve Science Spotlight summary of the recent Patient-Led Research Fund virtual event in which researchers share their latest findings about the underlying biology of ME/CFS, Long Covid, and other IACCIs.

solvecfs.org

 

[Felis Catus]

I just saw this on Fb:

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.

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.

(my bold)

Applaud for testing an unlicensed drug on children which we don't know if it works on adults??

Full letter: https://patientresearchcovid19.com/storage/2026/03/RECOVER-TLC-letter-LDN-pediatric-trial-1.pdf