iiinova — where your digital self keeps evolving

Reposted by Hannah Davis

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.

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Hannah Davis @ahandvanish.bsky.social · 06/08/2026

Neuromuscular dysfunction in #LongCovid shows changes between 1.2 - 2.6 yrs from infection: Muscle disease dropped from 78% (1.2 yrs) to 18% (2.6 yrs). But SFEMG (junction where nerve meets muscle) stayed abnormal: 54% (1.2 yrs) to 56% (2.6 yrs). www.sciencedirect.com/science/arti...

sciencedirect.com

Persistent neuromuscular dysfunction in long COVID: A quantitative and single fiber EMG follow-up study

Persistent symptoms after SARS CoV-2 infection, often designated as "long COVID”, continue to be an ongoing health issue. Previously, we reported elec…

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Reposted by Hannah Davis

Eric Topol @erictopol.bsky.social · 05/08/2026

Severe Covid leads to persistent viral reactivation, with >10 different viruses noted in the first 40 days after hospital admission. Long Covid was specifically associated with reactivation of latent Anelloviridae virus @nature.com www.nature.com/articles/s41...

nature.com

Virus reactivation in acute and long COVID-19 - Nature

Chronic reactivation of distinct herpesviruses and anelloviruses occur during acute and long COVID-19, and track with disease severity, inflammation and outcomes, revealing immune signatures with prog...

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Reposted by Hannah Davis

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/

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Reposted by Hannah Davis

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/

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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

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

#LongCovid has not decreased from 2020-2024. Prevalence is 13-23% of US population, increasing 0.4%-1.5% every 3 months. Incidence was 10-29%, but began increasing in 2023. "These findings indicate an accumulating rather than resolving disease burden." jamanetwork.com/journals/jam...

2 line graphs showing cumulative prevalence and quarterly incidence rates of Long Covid across 4 US regions

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Reposted by Hannah Davis

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).

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Reposted by Hannah Davis

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.

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Hannah Davis @ahandvanish.bsky.social · 20/05/2026

My keystone talk on #LongCovid from last year is now online, basically 2 short talks: From 6:00-16:20: Craniocervical instability & related issues in LC: youtu.be/53ESiGehdKY?... 16:20-21:00: Illness duration (changes & progression we see in LC over time) youtu.be/53ESiGehdKY?...

youtu.be

Hannah Davis Keystone talk - Craniocervical instability, Illness duration

YouTube video by Patient-Led Research Collaborative

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Reposted by Hannah Davis

Billy Hanlon @bhanlon15.bsky.social · 19/03/2026

Long COVID Clinical Podcast: “Hematology / Oncology Aspects with Dr. Nikhil Kamath” open.spotify.com/episode/1Uwk...

open.spotify.com

Episode 10 - Hematology/Oncology Aspects with Dr. Nikhil Kamath

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Reposted by Hannah Davis

Tom Kindlon @tomkindlon.bsky.social · 19/03/2026

I saw this posted elsewhere: -- This is pretty great. There are zines too. POSTERS/FLYERS (DOWNLOAD): ME/CFS and Masking Awareness - saltydyke's Ko-fi Shop ko-fi.com/s/f0919c480c #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LongCovid

Poster download in the link.
White background, black letters & a QR code.

It says: “WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY?
YOUR WEEK? YOUR YEAR?
ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone.
Practice self care & protect your community: Wear A Mask”

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Reposted by Hannah Davis

Chloé de Canson @chloedecanson.bsky.social · 15/03/2026

Today is Long COVID awareness day. What does the data show about Long COVID in 2026? How common is it, how bad is it, what does it consist in? The Patient-Led Research Collaborative has put together a fact sheet based on the most recent data. Cannot recommend highly enough!

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Reposted by Hannah Davis

loscharlos @loscharlos.bsky.social · 15/03/2026

On #LongCovidAwarenessDay — I think the most important thing to understand is that it’s still happening: “I got COVID for a 3rd time in 2025 (I'm vaxed, boosted & took paxlovid)... Boom #LongCovid. Can't climb due to PEM. I haven't climbed in almost a year.” “COVID… is still causing disability.“

Reddit post on Climber Girls sub:

—-
I've never posted here but I'm a lady climber and climbing is/was my life.

Endless trips, endless training. My friends. Impacted the jobs I took... My whole world. My whole world.

I was chipping away, trying to get to V12. Going through a rough life patch because I had to move away from a city I liked for a job. But climbing my hardest yet.

I got COVID for a third time in 2025 (I'm vaxed and boosted and took paxlovid)..... Boom long COVID. Can't climb due to PEM. I haven't climbed in almost a year. I even learned I was having some remnants of long COVID from prior infections (things like hives, or some sleep stuff, and deficiencies which I learned COVID can cause).

But this last one really did it. I'm not as severe as other people but I'll crash for a week if I go to the gym.

It is.... Really sad. I'm not used to it and don't know when I'll be used to it. I don't know if it goes away.

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Reposted by Hannah Davis

Long Covid Advocacy @longcovidadvoc.com · 12/03/2026

Fantastic release for #longcovidawarenessweek 🔥 Pragmatic 🔥 Insightful 🔥 Hopeful Well done & thank you to all involved 💙

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Reposted by Hannah Davis

jencurtinmd.bsky.social @jencurtinmd.bsky.social · 11/03/2026

So excited the #LongCOVID Treatment Guide is live! This has been over a year in the making working with the incredible team at @patientled.bsky.social! Thanks to everyone who reviewed & gave feedback on the guide! We really hope it helps the #IACC community!

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Reposted by Hannah Davis

Julia MV @julialmv.bsky.social · 11/03/2026

We collated the latest data to enable conversations between people with Long COVID and their providers about what interventions to try. I hope this helps folks make thoughtful decisions about what is right for them & decreases some suffering ❤️‍🩹

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Reposted by Hannah Davis

Patient-Led Research Collaborative @patientled.bsky.social · 11/03/2026

We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @rthm.bsky.social to help patients & providers explore treatment options together. The guide focuses on 24 medications, but includes a few other interventions for breadth /1

rthm.com

Long COVID Treatment Guide

An evidence-supported guide covering treatments addressing multiple Long COVID symptoms & mechanisms — focused on prescription medication, with a limited set of supplements, OTC medications, procedure...

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Reposted by Hannah Davis

Delthia Ricks @dricks.bsky.social · 16/02/2026

The Trump regime can't rescind $600 million in public health grants to 4 Democratic-led states, an Illinois federal judge ruled late last wk. Calif, Colorado, Illinois & Minnesota sued to block cuts to programs that track disease outbreaks & study health in LGBTQ communities & among people of color👇

apnews.com

Judge temporarily blocks Trump officials from rescinding health grants to some Democratic-led states

A federal judge has ruled that President Donald Trump’s administration cannot pull back $600 million in public health grants allocated to four Democratic-led states, for now.

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Reposted by Hannah Davis

PolyBio Research Foundation @polybiorf.bsky.social · 31/01/2025

In a recent RCT of Larazotide for GI symptoms in Long Covid, “the clearance in the Larazotide group of the Spike clearance was much faster,” Dr. Fasano says. “About 30% of placebo group tested positive for spike, while eventually none of them had Spike in Larazotide group.”

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Reposted by Hannah Davis

Julia MV @julialmv.bsky.social · 20/01/2026

2 million! The scale of people that this review reached is incredible I can only imagine what the next 3 years of researching and publishing on Long COVID has in store for us 🎢

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Hannah Davis @ahandvanish.bsky.social · 08/01/2026

"We believe that internal tremors [in #LongCovid] represent... dysautonomia & small fiber neuropathy... caused by hypovolemia, cerebral hypoperfusion, hyperadrenergic state, mast cell hyperactivation, & neuropathic processes affecting small nerve fibers." www.mdpi.com/2035-8377/17...

mdpi.com

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Hannah Davis @ahandvanish.bsky.social · 08/01/2026

A database of cancer + COVID connections (it's a little clunky, caveating I haven't dived into it yet): www.co-19pdb.habdsk.org #LongCovid

co-19pdb.habdsk.org

Covid-19 Pendemic DataBase (CO-19PDB)

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Reposted by Hannah Davis

Julia MV @julialmv.bsky.social · 19/12/2025

Out today - our recommendations for Long COVID clinical trial design, focusing on currently available outcome measures: www.sciencedirect.com/science/arti... We make 5 overarching recommendations for Long COVID clinical trials: 1) thorough characterisation of baseline disease 1/3

sciencedirect.com

Long COVID has created a worldwide public health crisis and has no approved treatments or validated biomarkers. We summarize the current challenges an…

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Reposted by Hannah Davis

C.H. Romatowski @romatowski.bsky.social · 03/12/2025

If you’re not familiar with @patientled.bsky.social’s uniquely successful model, here’s a nice write-up. “I’ll admit that I was skeptical…Given the complexity of the science, wouldn’t the N.I.H. be better suited to this role than the patients, some of whom are very ill? “I was wrong.” #LongCovid

nytimes.com

Opinion | A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves (Published 2024)

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Reposted by Hannah Davis

C.H. Romatowski @romatowski.bsky.social · 02/12/2025

So grateful to the community that sustains PLRC’s pathbreaking work on Long Covid and related conditions like ME/CFS. Living with an illness that has zero FDA-approved treatments, the first-class research PLRC leads is such a source of hope to me. Gifts are doubled through the end of the year!

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Reposted by Hannah Davis

C.H. Romatowski @chromatowski.bsky.social · 02/12/2025

Your impact 🤍 To give: patientresearchcovid19.com/donate/

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Reposted by Hannah Davis

C.H. Romatowski @chromatowski.bsky.social · 02/12/2025

So grateful to friends and family who sustain PLRC’s critical work. When so much Long Covid and IACC research misses the mark because it leaves out what we know from actually living w/these conditions, PLRC performs a critical function in bridging that disconnect. Please help keep that work going!

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Reposted by Hannah Davis

Patient-Led Research Collaborative @patientled.bsky.social · 02/12/2025

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! Support our work: patientresearchcovid19.com/donate/

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Reposted by Hannah Davis

Patient-Led Research Collaborative @patientled.bsky.social · 19/09/2025

Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with #LongCovid for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input! Find a trial site near you: addresslongcovid.com/sites/

addresslongcovid.com

Study Sites | Address: Long COVID Clinical Study | BioVie Pharma

Study Sites near you! Learn more about participating in a clinical study of a Trial Drug to treat neurological symptoms of Long COVID.

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Hannah Davis @ahandvanish.bsky.social · 25/09/2025

Please consider donating if you’re financially able! Vee is an incredible #longcovid and disability advocate and needs to raise funding for urgent transportation that Medicaid won’t cover:

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Reposted by Hannah Davis

Patient-Led Research Collaborative @patientled.bsky.social · 19/08/2025

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”

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Reposted by Hannah Davis

Brian Vastag @brianvastag.mas.to.ap.brid.gy · 18/08/2025

Re: my last boost of @patientled Really loved Hannah's point that #LongCovid is not mysterious & unknown....whenever you read or hear that, replace it with "complex, devastating and increasingly well-understood as an incurable neuro-immune disorder."

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Reposted by Hannah Davis

Christophe Veltsos @drinfosec.bsky.social · 03/08/2025

🚨🧵 by @ahandvanish.bsky.social on Twitter: "Study finds brainstem reduction & deformation in #LongCovid patients aged 20-50... They found cerebrospinal fluid (CSF) flow velocity is significantly reduced..." Full thread: threadreaderapp.com/thread/19513...

Study finds brainstem reduction & deformation in #LongCovid patients aged 20-50.

They found cerebrospinal fluid (CSF) flow velocity is significantly reduced, & deformities in the 4th ventricle & cerebellar peduncles, suggesting impaired CSF dynamics.

https://medrxiv.org/content/10.1101/2025.04.08.25325108v1 1/

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Reposted by Hannah Davis

Eric Topol @erictopol.bsky.social · 06/08/2025

How does Epstein- Barr virus induce multiple sclerosis? The infection leads to B cells that get into the brain, attracting pro-inflammatory T cells (mouse model) www.nature.com/articles/s41...

nature.com

EBV induces CNS homing of B cells attracting inflammatory T cells - Nature

Epstein–Barr virus infection generates a neuroinvasive B cell subset, which recruits activated T cells to the central nervous system, promoting multiple sclerosis.

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Reposted by Hannah Davis

Dr. Sandra Steingraber 🏳️‍🌈 @ssteingraber1.bsky.social · 25/07/2025

NEW RESEARCH: breathing polluted air in midlife (45-60 yo) can accelerate cognitive aging decades later. Even low levels of pollutants harm memory and processing speed. Your reminder that dementia is projected to triple by midcentury. Also we’re cutting Medicaid. www.newsweek.com/this-age-ran...

newsweek.com

This is the age range when air pollution starts damaging your brain

Air pollution damages the brain. Here's when it starts.

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Reposted by Hannah Davis

Patient-Led Research Collaborative @patientled.bsky.social · 14/07/2025

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

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Reposted by Hannah Davis

Patient-Led Research Collaborative @patientled.bsky.social · 14/07/2025

The ADDRESS-LC #LongCovid clinical trial is still enrolling! The trial looks at bezisterim, an investigational anti-inflammatory drug that crosses the blood–brain barrier. 1/

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Reposted by Hannah Davis

betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 09/07/2025

The live blog is now updated with all of today's talks, plus an interactive table of contents at the top. Thank you for the great webinar @patientled.bsky.social !!!!!

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Reposted by Hannah Davis

Patient-Led Research Collaborative @patientled.bsky.social · 03/07/2025

ADDRESS-LC, the #LongCovid clinical trial for Bezisterim, is still enrolling! Bezisterim is an investigational drug that has been studied as a potential treatment for neurological and neurodegenerative disorders. Visit addresslongcovid.com to see if you're eligible! 1/

addresslongcovid.com

ADDRESS: Long COVID Clinical Study | BioVie Pharma

ADDRESS: Long COVID- Clinical study evaluating anti-inflammatory drug for underlying the neurological symptoms of Long COVID.

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Myra Batchelder @myrabatchelder.bsky.social · 03/07/2025

Thank you to everyone calling their Republican Reps and urging them to vote NO on this horrible budget bill! This bill is a matter of life or death for so many people, Thank you to everyone taking action and trying to prevent it from passing!

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Reposted by Hannah Davis

Ezra S @ezra.zone · 26/06/2025

Super excited to participate in this webinar on the ADDRESS-LC trial – please use the link below to sign up and join in. It will be recorded if you can't make it!

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