Patient-Led Research Collaborative
@patientled.bsky.social
Patient-Led Research for #LongCovid! http://patientledresearch.com
PLRC is wrapping up our summer fundraiser and want to thank everyone who has supported so far! There's still time to give. Your support helps us continue addressing the #LongCovid questions patients care most about. Donate: patientresearchcovid19.com/donate/
PLRC is continuing our summer fundraiser to help sustain our work and fund new projects that will improve clinical trials and biomarkers! You can help us by donating, sharing our posts, & forwarding emails you receive to folks in your network 🧵 Donate: patientresearchcovid19.com/donate/
PLRC is continuing our summer fundraiser to help sustain our work and fund new projects that will improve clinical trials and biomarkers! You can help us by donating, sharing our posts, & forwarding emails you receive to folks in your network 🧵 Donate: patientresearchcovid19.com/donate/
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 by donating, sharing our posts, and forwarding the emails you receive to folks in your network.🧵 Donate: patientresearchcovid19.com/donate/
Check out this thread for a peek at PLRC’s upcoming projects! Very grateful for everyone who supports this work.
Patient-Led Research Collaborative@patientled.bsky.social · 2w agoPLRC 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 by donating, sharing our posts, and forwarding the emails you receive to folks in your network.🧵 Donate: patientresearchcovid19.com/donate/
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 by donating, sharing our posts, and forwarding the emails you receive to folks in your network.🧵 Donate: patientresearchcovid19.com/donate/
Great article on a PLRC-funded project! "Her idea has, over time, become a familiar one: an infection which the body failed to clear or deal with properly has left one of the big guns of the immune system–the cytotoxic T-cells–in a state of chronic activation." @cortjohnson.bsky.social #LongCovid
Hitting the Target? ME/CFS and long COVID T-Cell Researchers on Uncovering the Precise Drivers of the Illnesses - Health Rising
Dr. Selin and company believe they can solve one of the key mysteries of ME/CFS and long COVID: exactly why the T-cells are getting pummeled.
healthrising.org
Our asks for future phenotyping work: ✅ report sensitivity to algorithm choice & subsampling, not just internal scores ✅ capture the full breadth of symptoms, including severity and trajectory ✅ integrate biomarkers to define real endotypes, not just symptom boundaries 14/
Takeaways: 1) Symptoms alone are likely not the best way to define #LongCovid phenotypes. We need more phenotyping by biomarkers! 2) Studies using fewer symptoms, fewer patients, or a single clustering method are likely detecting phenotypes that aren't robust or repeatable. 7/
We have a new paper out! We asked a simple question about Long COVID “phenotypes": if you take the same patients and the same symptoms but run different clustering algorithms, do you get the same patient subgroups? Short answer: no. 🧵 #LongCovid 1/
We have a new paper out! We asked a simple question about Long COVID “phenotypes": if you take the same patients and the same symptoms but run different clustering algorithms, do you get the same patient subgroups? Short answer: no. 🧵 #LongCovid 1/
New paper in @thelancet.com ft. PLRC member Dr. Megan Fitzgerald (@themegascope.bsky.social): "In this paper, a group of bioethicists, clinician-scientists and people.. with #LongCovid argue that it is ethically imperative to conduct trials of disease-modifying treatments for LC now." 🧵
The next phase in Long COVID research: addressing the ethical challenges in trials of disease-modifying treatments
Almost five years after COVID-19 emerged, multiple scientific uncertainties remain about why some people experience ongoing symptoms long after being infected with SARS-CoV-2 (Long COVID). The pathoph...
thelancet.com
Yes. Yes yes yes yes yes yes yes.
Patient-Led Research Collaborative@patientled.bsky.social · 2mo agoNew paper in @thelancet.com ft. PLRC member Dr. Megan Fitzgerald (@themegascope.bsky.social): "In this paper, a group of bioethicists, clinician-scientists and people.. with #LongCovid argue that it is ethically imperative to conduct trials of disease-modifying treatments for LC now." 🧵
New paper in @thelancet.com ft. PLRC member Dr. Megan Fitzgerald (@themegascope.bsky.social): "In this paper, a group of bioethicists, clinician-scientists and people.. with #LongCovid argue that it is ethically imperative to conduct trials of disease-modifying treatments for LC now." 🧵
The next phase in Long COVID research: addressing the ethical challenges in trials of disease-modifying treatments
Almost five years after COVID-19 emerged, multiple scientific uncertainties remain about why some people experience ongoing symptoms long after being infected with SARS-CoV-2 (Long COVID). The pathoph...
thelancet.com
Thank you to all the participants, investigators & site staff for their commitment. We are especially grateful to our advisors living with #LongCOVID, and advocacy partners @solveme.bsky.social and @patientled.bsky.social who supported enrollment & participation in the study.
Enrollment is complete in our Phase 2 ADDRESS-LC clinical trial evaluating bezisterim for the treatment of neurological symptoms of Long COVID, with topline data expected in late summer 2026. Learn more: investors.bioviepharma.com/news/news-de...
In this Project ECHO Long Covid Webinar Series, PLRC co-lead @loscharlos.bsky.social talks to Dr. Alba Azola about the evidence suggesting some #LongCovid patients may have undiagnosed vascular compression. Dr. Azola estimates about 15% of LC patients may have some form of vascular compression.
#BlueSunday2026 #TeaPartyForME2026 (My tea is iced this year. 🥵) supporting Open Medicine Foundation @openmedf.bsky.social + monthly support to Patient Led @patientled.bsky.social
I found LDN life-changing. I'm an adult, and they started me at 1.5 mg, and I wanted to die. It was so terrible. I endured, but I wouldn't wish it on anyone. Medical people scoffed that it couldn't be so awful since it's a micro-dose, but the horror...
Patient-Led Research Collaborative@patientled.bsky.social · 3mo ago"A recent preprint study of LDN in children and adolescents with Long COVID that started a treatment regimen at 1.5 mg had a 25% rate of medication discontinuation attributed to side effects" Read full letter: patientresearchcovid19.com/storage/2026...
PLRC has released a letter in response to RECOVER-TLC's decision to retain their proposed dosage & titration schedule for LDN. This decision ignores public feedback, including concerns about slower titration approaches for children with #LongCovid. Read: patientresearchcovid19.com/storage/2026...
patientresearchcovid19.com
Watch the full presentation "Long COVID Web: Patient Perspectives on #LongCovid in Primary Care and Clinical Trials" here: www.youtube.com/watch?v=vYGa...
Long COVID Web: Patient Perspectives on Long COVID in Primary Care and Clinical Trials
YouTube video by Long COVID Web
youtube.com
2. She also shared how PLRC’s work is helping to address these limitations — by incorporating patient expertise to strengthen trial design. Two of our latest papers below aim to address the current limitations in the field 👇 • www.thelancet.com/journals/ebi... • www.thelancet.com/article/S147...
Recommended long COVID outcome measures and their implications for clinical trial design, with a focus on post-exertional malaise
Long COVID has created a worldwide public health crisis and has no approved treatments or validated biomarkers. We summarize the current challenges and considerations of outcome selection in Long COVI...
thelancet.com
PLRC co-lead @leticiasaurus.bsky.social recently presented on the state of #LongCovid clinical trials — and shared that findings from many trials remain inconclusive due to limitations in study design, most notably the widespread failure to account for post-exertional malaise (PEM).
PLRC co-lead @leticiasaurus.bsky.social recently presented on the state of #LongCovid clinical trials — and shared that findings from many trials remain inconclusive due to limitations in study design, most notably the widespread failure to account for post-exertional malaise (PEM).
This ep of “A Friend for the Long Haul” features PLRC member @kpbanks.bsky.social (DrPH) She describes a study where non-English speakers reported new health symptoms but hadn’t realized they were connected to their COVID infection, largely because information wasn’t available in their language.
This ep of “A Friend for the Long Haul” features PLRC member @kpbanks.bsky.social (DrPH) She describes a study where non-English speakers reported new health symptoms but hadn’t realized they were connected to their COVID infection, largely because information wasn’t available in their language.
PLRC has revolutionised patient-led research and generated ground-breaking long cocid research, in just 6 years. It is just an amazing, inspiring organisation.
Patient-Led Research Collaborative@patientled.bsky.social · 3mo agoThis month marks PLRC’s 6 year anniversary!! 6 years ago, we released the survey that would become the first report about #LongCovid - the first data that showed the world its severity. While it always bewilders us how much time has passed, we’re proud of our work. 1/
This month marks PLRC’s 6 year anniversary!! 6 years ago, we released the survey that would become the first report about #LongCovid - the first data that showed the world its severity. While it always bewilders us how much time has passed, we’re proud of our work. 1/
🧵📄Nouvelle ressource sur le #CovidLong ! Maintenant disponible en français 🇫🇷 Patient-Led Research Collaborative publie sa fiche d'information 2026 sur #LongCovid , basée sur les données scientifiques les plus récentes 👇 @patientled.bsky.social
