iiinova — where your digital self keeps evolving

Patient-Led Research Collaborative @patientled.bsky.social · 01/10/2026

A new publication is out from PLRC member Dr. Alison Cohen of UCSF! "We encourage state legislatures to pass legislation that requires all schools to make changes to their infrastructure to support cleaner air to protect students & teachers." #LongCovid

journals.sagepub.com

Sage Journals: Discover world-class research

Subscription and open access journals from Sage, the world's leading independent academic publisher.

1196

Reposted by Patient-Led Research Collaborative

Shannon Knight @shannonknight.bsky.social · 17/09/2026

Positive results from a trial!

0126

Reposted by Patient-Led Research Collaborative

babs ✨ @itsbabs.bsky.social · 17/09/2026

“It’s possible, even likely, that one or more of the other explanations for longCovid’s pathology is … viral persistence leading to immune dysfunction, for example, which then prompts inflammation or interferes with mitochondria & causes cellular damage.” it’s hubris to think it won’t happen to you

Perhaps surprisingly, Peluso was initially skeptical that viral persistence could be a key characteristic of long Covid. "We're really trained to conceive of most pathogens as transient, especially RNA viruses like SARS-CoV-2," he told me. But when Peluso and his colleagues began analyzing tissue from LIINC participants, they were stunned to find the virus's RNA in the tissue of people with long Covid who were months or even years past their initial infection. "It was only when we started to see it in our own program that I began to realize that the truth might be more complicated than what the textbook said," he recalled.
"When you're looking at that slide in front of you, it's quite remarkable."

18635

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026

This is a great example of what happens when trialists like @biovie.bsky.social listen to patients. Based on feedback from patient-researchers at PLRC & other orgs, the trial changed eligibility criteria for illness duration from a 2 year cap to include patients sick for longer. 2/

1172

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026

This is an incredibly exciting development for the #LongCovid field, and shows what is possible when trials choose innovative treatment candidates and are designed with patient expertise! 7/ bsky.app/profile/biov...

0277

Reposted by Patient-Led Research Collaborative

playon.bsky.social @playon.bsky.social · 15/09/2026

#longdcovid thread

011

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026

We're thrilled to see positive results from @biovie.bsky.social's clinical trial on bezisterim in #LongCovid! The drug benefited patients with high levels of fatigue, PEM and/or cognitive impairment, with multiple significant and trending results, including objective cognitive tests. 1/

The summary “forest chart” chart shows only those endpoints that reach statistically significant or are trending, and the charts for all endpoints can be found in the full data announcement presentation that was discussed during BioVie's conference call.

25621

Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026

25621

Reposted by Patient-Led Research Collaborative

BioVie Inc @biovie.bsky.social · 15/09/2026

Today, we announced positive results from our Phase 2 signal finding ADDRESS-LC trial evalulating bezisterim for the treatment of neurological symptoms associated with #LongCOVID. Read: investors.bioviepharma.com/news/news-de...

13711

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 25/08/2026

PLRC member @julialmv.bsky.social published a piece in @thelancetinfdis.bsky.social highlighting how quickly her team completed recruitment for the LoCITT-T clinical trial. They recruited 1,000 people in less than two months — a feat many other trialists doubted was possible. 1/

Screenshot of The Lancet Infectious Disease article titled "Rapid recruitment for a remote long COVID clinical trial" by Julia Moore Vogel.
Graph with text below that reads, "Figure Long COVID Treatment Trial Tirzepatide daily enrolment"

32414

Patient-Led Research Collaborative @patientled.bsky.social · 25/08/2026

32414

Reposted by Patient-Led Research Collaborative

valebodi.bsky.social @valebodi.bsky.social · 21/08/2026

Patient Led Research Collaborative 2026 Long COVID Fact Sheet (March 2026) diseases. 18 and increased risk of autoimmune and autoinflammatory connective tissue disorders.19 Available in several languages @patientled.bsky.social

011

Reposted by Patient-Led Research Collaborative

valebodi.bsky.social @valebodi.bsky.social · 21/08/2026

COVID causes high rates of serious conditions and lifelong illnesses. a. SARS-CoV-2 infection induces high rates of permanent and debilitating conditions, including dysautonomia, myalgic encephalomyelitis,16 and diabetes.17 COVID is associated with a 49% increased rate of new-onset autoimmune

patientresearchcovid19.com

2026 Long COVID Fact Sheet – Patient Led Research Collaborative

121

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 17/08/2026

A new PLRC-funded study is out from Dr. Moreau & team! They studied whether inherited haptoglobin phenotypes—a genetic trait that determines how efficiently the body clears free hemoglobin & protects tissues from oxidative stress—could explain part of the variability of severity in #LongCovid 1/

mdpi.com

2206

Patient-Led Research Collaborative @patientled.bsky.social · 17/08/2026

mdpi.com

2206

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 14/08/2026

A new PLRC-funded study is out from Dr. Rob Wüst and team! The study compared people with #LongCovid and #MECFS to healthy individuals who underwent 60 days of strict bed rest, and the underlying changes were clearly different. 1/ Read: www.nature.com/articles/s41...

nature.com

Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications

Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...

14219

Reposted by Patient-Led Research Collaborative

Hannah Davis @ahandvanish.bsky.social · 28/05/2026

Large study (av age 45) shows people with #LongCovid are 4.48x more likely to have a Major Adverse Cardiovascular Event (stroke, pulmonary embolism, heart failure) & 53% more likely to die. True regardless of age, BMI, vaccination, variant. Risks last 3+ years from infection. 1/

4 graphs showing increasing risk of MACE, coronary artery disease, stroke, and mortality in LC vs non-LC

2016775

Patient-Led Research Collaborative @patientled.bsky.social · 05/08/2026

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/

Your support helped 50,000 people
access treatment information

2125

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 29/07/2026

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/

Three Research Projects PLRC Can Finish With Your Help.

2189

Patient-Led Research Collaborative @patientled.bsky.social · 29/07/2026

2189

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 20/07/2026

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/

PLRC is currently fundraising for two projects that will improve clinical trials and biomarkers.

12017

Reposted by Patient-Led Research Collaborative

C.H. Romatowski @chromatowski.bsky.social · 20/07/2026

Check out this thread for a peek at PLRC’s upcoming projects! Very grateful for everyone who supports this work.

084

Patient-Led Research Collaborative @patientled.bsky.social · 20/07/2026

12017

Patient-Led Research Collaborative @patientled.bsky.social · 14/07/2026

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

healthrising.org

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.

1268

Reposted by Patient-Led Research Collaborative

ME/CFS San Diego @mecfssd.bsky.social · 03/07/2026

ME/CFS Newsletters: @patientled.bsky.social : 4xde2.r.sp1-brevo.net/mk/mr/sh/1t6... AMMES: berrima.eomail5.com/web-version?...

4xde2.r.sp1-brevo.net

Quarterly Newsletter: Three New Papers led by PLRC, Long COVID Treatment Guide Webinar, and Two New Papers Co-Authored by PLRC

011

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 23/06/2026

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/

1104

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 23/06/2026

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/

1113

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 23/06/2026

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/

12413

Patient-Led Research Collaborative @patientled.bsky.social · 23/06/2026

12413

Reposted by Patient-Led Research Collaborative

Andrea Is Sick of Long Covid @andreastudiescovid.bsky.social · 06/06/2026

Yes. Yes yes yes yes yes yes yes.

02510

Reposted by Patient-Led Research Collaborative

BioVie Inc @biovie.bsky.social · 26/05/2026

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.

042

Reposted by Patient-Led Research Collaborative

BioVie Inc @biovie.bsky.social · 26/05/2026

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...

LONG COVID UPDATE
BioVie Announces Full Enrollment of the ADDRESS-LC Trial of Bezisterim for the Treatment of Neurological Symptoms Associated with Long COVID

1115

Patient-Led Research Collaborative @patientled.bsky.social · 18/05/2026

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.

1188

Reposted by Patient-Led Research Collaborative

Alexis M. 🎃 @turnoftheshrew.bsky.social · 17/05/2026

#BlueSunday2026 #TeaPartyForME2026 (My tea is iced this year. 🥵) supporting Open Medicine Foundation @openmedf.bsky.social + monthly support to Patient Led @patientled.bsky.social

A white person’s hand holding a glass of iced tea outside; it is sunny and there are various green bushes, one with pink flowers, and a green lawn in the background

1186

Reposted by Patient-Led Research Collaborative

Shannon Knight @shannonknight.bsky.social · 14/05/2026

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...

0103

Patient-Led Research Collaborative @patientled.bsky.social · 14/05/2026

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

1155

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 05/05/2026

Watch the full presentation "Long COVID Web: Patient Perspectives on #LongCovid in Primary Care and Clinical Trials" here: www.youtube.com/watch?v=vYGa...

youtube.com

Long COVID Web: Patient Perspectives on Long COVID in Primary Care and Clinical Trials

YouTube video by Long COVID Web

0174

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 05/05/2026

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...

thelancet.com

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...

1104

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 05/05/2026

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).

2259

Patient-Led Research Collaborative @patientled.bsky.social · 05/05/2026

2259

Reposted by Patient-Led Research Collaborative

Patient-Led Research Collaborative @patientled.bsky.social · 02/05/2026

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.

1104

Patient-Led Research Collaborative @patientled.bsky.social · 02/05/2026

1104

Reposted by Patient-Led Research Collaborative

Flora Cornish @floracornish.bsky.social · 23/04/2026

PLRC has revolutionised patient-led research and generated ground-breaking long cocid research, in just 6 years. It is just an amazing, inspiring organisation.

082

Patient-Led Research Collaborative @patientled.bsky.social · 23/04/2026

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/

13315

Reposted by Patient-Led Research Collaborative

#ApresJ20 - Association Covid Long France @apresj20.bsky.social · 22/04/2026

🧵📄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

PATIENT-LED RESEARCH
COLLABORATIVE
2026 LONG COVID
FACT SHEET
now available in multiple languages
Access the latest data reflecting today's
Long COVID risks—now translated to reach more communities worldwide.
Available languages:
Portuguese • French • Korean • Japanese

174

Reposted by Patient-Led Research Collaborative

Billy Hanlon @bhanlon15.bsky.social · 22/04/2026

Long COVID Web: 'Long COVID Web: Patient Perspectives on Long COVID in Primary Care and Clinical Trials' - Dr. Tiffany Walker, Emory Univ. - Dr. Letícia Soares, PLRC www.youtube.com/watch?v=vYGa...

youtube.com

Long COVID Web: Patient Perspectives on Long COVID in Primary Care and Clinical Trials

YouTube video by Long COVID Web

196