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patientled.bsky.social
Patient-Led Research Collaborative
@patientled.bsky.social
9.3K followers 180 following 110 posts
Patient-Led Research for #LongCovid! http://patientledresearch.com
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patientled.bsky.social
Powerful closing remarks from PLRC co-founder @ahandvanish.bsky.social at the Keystone Symposia on #LongCovid last week, reflecting on the state of research and the journey of the patient community:

"In our immediate presence, time slows, while the world beyond speeds up, and moves without us”
August 19, 2025 at 6:20 PM
patientled.bsky.social
Contact a study site to determine if you're eligible.

More US study sites will be added over the next few months. 🔗 addresslongcovid.com/sites/

3/
site map with sites located in Silver Spring, MD — DMV area, Jacksonville, Florida, Farmington, MI, Dallas TX, and Columbus, GA
July 14, 2025 at 8:00 PM
patientled.bsky.social
Contact a study site to determine if you're eligible.

More US study sites will be added over the next few months.

🔗https://addresslongcovid.com/sites/ 3/
site map with sites located at Silver Spring, MD — DMV area, Jacksonville, Florida, Farmington, MI, Dallas TX, Columbus, GA
July 3, 2025 at 5:14 PM
patientled.bsky.social
We're hosting a Patient-Led Research Fund (PLRF) webinar on July 9, 1–4:30PM ET!

Hear results from 10 PLRF-funded biomedical studies (on microclots, T cell exhaustion, trials, & more), all selected by a panel of patient-researchers.

🗓️ Register: us02web.zoom.us/webinar/regi...

#LongCOVID
infographic on the PLRF with an address to register at bit.ly/PLRF-2025 list of researchers presenting, including on T cell responses, foraminal stenosis in ME/CFS patients, and more list of researchers presenting, including on microclots, PEM pathophysiology, clinical trial results, and more
June 24, 2025 at 9:43 PM
patientled.bsky.social
There are many sites across the US hosting this trial! Contact a study site to determine if you're eligible.

More US study sites will be added over the next few months. 🔗 addresslongcovid.com/sites/ 3/
screenshot of google maps, showing site locations in Silver Spring, MD, Jacksonville, FL, Farmington, MI, Dallas, TX, and Columbus, GA
June 20, 2025 at 7:48 PM
patientled.bsky.social
Dr. Kelly O'Brien:

"I’m grateful for PLRC’s unwavering leadership and scientific rigor in Long COVID participatory action research, and looking forward to growing use of PLRC’s Patient-Led Research Scorecards." 8/
"I’m grateful for PLRC’s unwavering leadership and scientific rigor in Long COVID participatory action research, and looking forward to growing use of PLRC’s Patient-Led Research Scorecards.” – Dr. Kelly O’Brien, Professor in the Department of Physical Therapy, at the University of Toronto, Applying Dynamic Disability.
April 17, 2025 at 8:02 PM
patientled.bsky.social
Dr. Flora Cornish:

"PLRC has changed the landscape of patient engagement in research, merging patients’ lived and scientific expertise to produce global breakthroughs." 7/
PLRC has changed the landscape of patient engagement in research, merging patients’ lived and scientific expertise to produce global breakthroughs. Collaborating with PLRC and a diverse scientific team on a project on Long Covid in Brazil has taught me what a disability-justice-informed research project can be, and how to centre patients’ experience and needs to produce really grounded recommendations.” – Dr. Flora Cornish, Professor in Research Methodology at the London School of Economics and Political Science.
April 17, 2025 at 8:02 PM
patientled.bsky.social
Dr. Wes Ely:

"Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID." 6/
Over the past five years, PLRC has sounded the Clarion call for truth about the disease state of Long COVID. Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID. In designing our NIH-funded clinical trial of immunomodulation for Long COVID, we were greatly edified by leaders of PLRC, who helped us hone our research design…PLRC, to you I raise a toast and wish you a happy fifth birthday." – Dr. E. Wesley Ely, MD, Professor of Medicine & Critical Care at Vanderbilt University Medical Center.
April 17, 2025 at 8:02 PM
patientled.bsky.social
Dr. Michael Peluso:

"Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research." 5/
Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research. The deep alliance between clinician-researchers and patient-researchers from the earliest days of the pandemic has been one of the most important drivers of progress in this field, and is a major motivator for me personally to focus on studying diseases like Long COVID.” – Dr. Michael Peluso, Assistant Professor of Medicine at the University of California, San Francisco
April 17, 2025 at 8:02 PM
patientled.bsky.social
Dr. Ziyad Al-Aly:

"PLRC has been a transformational force in Long Covid. These people are my heroes & I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the PLRC survey...made us pursue Long Covid research and advocacy." 4/
PLRC has been a transformational force in Long Covid. These people are my heroes and I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the original PLRC survey and stories from PLRC members made us pursue Long Covid research and advocacy. The work done by PLRC galvanised a lot of progress over the past 5 years–progress on every front from increasing awareness and understanding of Long Covid, to research, improved clinical care, and advocacy. I have huge admiration for each and every one of them and am eternally grateful for what they have done.” – Dr. Ziyad Al-Aly, Chief of Research and Development Service, VA St. Louis Health Care System
April 17, 2025 at 8:02 PM
patientled.bsky.social
PLRC is 5 years old today!!!!

If you are able, please consider donating to help sustain #LongCOVID research when it’s needed most.

bit.ly/plrc-donate 1/
banner with pastel colors that says "Patient-Led Research Collaborative 5th anniversary - you can sustain long covid patient-led work when it's needed most!" with a link to bit.ly/plrc-donate
April 17, 2025 at 8:02 PM
patientled.bsky.social
Interviews with a wide range of healthcare professionals, from administrative leaders to multidisciplinary primary and specialist care staff, highlighted a large swath of interconnected issues that have led to under-recognition of Long Covid and insufficient access & care. 2/
chart showing interconnected issues resulting in insufficient access and care of Long Covid in Brazil
January 7, 2025 at 11:44 PM
patientled.bsky.social
Please join us tomorrow Tuesday, Dec 10th at 10am PT/1pm ET for our 2024 Community Webinar!

We'll highlight PLRC's accomplishments, provide an overview of our progress & impact since our inception, and outline our future plans.

Register at bit.ly/plrc-cw24! #LongCovid
An image with the PLRC logo and large text that says "Community Webinar 2024", with the time and link to register.
December 9, 2024 at 8:13 PM