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/

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/

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/

#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...

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).

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.

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?...

Curious new study shows more than double the prevalence of small intestinal bacterial overgrowth (SIBO) in people with hypothyroidism compared to those without - 33% vs 15%. academic.oup.com/jcem/article... #LongCovid #neisvoid

The @nationalacademies.org Awards for Excellence in #scicomm have honored some of the best thinkers & creatives I know, like @chanda.blacksky.app @neillewisjr.bsky.social @cbo.bsky.social Top award: $40,000. Deadline: April 3. Explore & apply www.nationalacademies.org/programs/NAE...

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

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

Now at 2 million downloads and the 4th highest @altmetric.com rated peer-reviewed paper in the past 3+ years Thanks to @ahandvanish.bsky.social @lisamccorkell.bsky.social @julialmv.bsky.social www.nature.com/articles/s41...

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!

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.“

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

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!

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 ❤️‍🩹

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

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👇

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.”

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 🎢

3 years ago @ahandvanish.bsky.social, @lisamccorkell.bsky.social, @julialmv.bsky.social and I published a review on #LongCovid. Since then it has been downloaded nearly 2 million times and is #4 of >500,000 papers published since by @altmetric.com www.nature.com/articles/s41...

"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...

Monoclonal antibody Lu AG09222 decreased monthly migraine days: www.nejm.org/doi/full/10.... #LongCovid

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

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

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

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!

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

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!

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/

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/

Fascinating research on issues with blood flow in the brain in MDD (Major Depressive Disorder). Low blood volume and low blood flow are issues in #MECFS as well.

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:

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”

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."

🚨🧵 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...

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...

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...

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/

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/

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 !!!!!

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/

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!

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!

Please consider joining the @patientled.bsky.social registry whether you have Long COVID or not. We are excited to begin longitudinal data collection (which has been lacking) & let interested folks know about additional research & clinical trial opportunities: mydatahelps.org/e/PLRCRG/Wel... 1/2

PLRC have transformed the meaning of 'patient expertise' or 'community-led research'. Not only do they lead crucial research, they fund innovative new lines og inquiry - catch up with their webinar next week!

Excited to join the SPEAR study group, working with @Invivyd as well as exceptional scientists like @MichaelPelusoMD and @microbeminded2 to bring mAB clinical trials to people with #LongCOVID and post-vaccination syndrome. These trials are LONG overdue. LFG! 💪🏼 investors.adagiotx.com/news-release...

Now dreaming of a conversation (and/or interview for us to also watch/participate) between @hankgreen.bsky.social and @virusesimmunity.bsky.social @putrinolab.bsky.social @ahandvanish.bsky.social @exceedhergrasp1.bsky.social Amy Proal from @polybiorf.bsky.social and other stellar researchers