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

Just a few suggestions for a start if you don’t follow them already @virusesimmunity.bsky.social @putrinolab.bsky.social @patientled.bsky.social @polybiorf.bsky.social @exceedhergrasp1.bsky.social @openmedf.bsky.social

Hello…doing some research now on the increasing viral impact on people as we went super global as a potential driver of immune disregulation. I’ve got some good leads on the current state of research but if there’s anyone who knows anything they think I should know, please let me know!!

Does anyone know of providers treating CCI non-surgically in or near NYC/Brooklyn? PT, PRP injections, etc all very welcome. #LongCovid #mespine

This is gonna be great!

We're hosting a webinar on the results of our Patient-Led Research Fund - 10 biomedical studies all selected by patients! Please join! us02web.zoom.us/webinar/regi...

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

I'm a patient rep on this trial – I think it's super interesting. Take a look and sign up if you meet the criteria!

I'm excited about this #LongCovid trial! If you meet the eligibility criteria, please consider enrolling - more sites nationwide to be added:

My team is very much looking forward to join the @keystonesymposia.bsky.social on #LongCovid and other PAIS (2 talks, 3 posters). Organized by @virusesimmunity.bsky.social @ahandvanish.bsky.social on Aug 10-13 2025 in Santa Fe: www.keystonesymposia.org/conferences/...

Fascinating article about how an invasive species of Italian lizard in Cincinnati might be tolerant to heavy metals and Lyme bacterium #pwME #pwLC #NEISVoid www.cincinnati.com/story/news/2...

I urge everyone to read Unbreaking’s new page on everything the govt is doing to destroy & diminish medical research funding. It’s the best thing I’ve read on this topic: @lizneeley.bsky.social & co have such done an incredible job. unbreaking.org/issues/medic...

You can phonebank for Zohran from anywhere, and it’s going to be consequential for people everywhere to have a socialist mayor in NYC!

COVID is surging in Taiwan, meaning it's going to surge here shortly. Wear a mask indoors guys, and get vaccinated if/while you still can.

Does anyone have recommendations for YouTube videos on EDS-literate neck and back exercises to strengthen the cervical spine, for someone with mild CCI? #longcovid #mespine #neisvoid

Does anyone have recommendations for YouTube videos on EDS-literate neck and back exercises to strengthen the cervical spine, for someone with mild CCI? #longcovid #mespine #neisvoid

#pwME #pwLC #NEISVoid this is an awesome opportunity for several people (non-lawyers) to write a piece addressing how the law could better serve our community; more details in post. Deadline to apply June 30, 2025

Very cool event this Wednesday hosted by Theater of War reenacting Rebecca Nagle’s Atlantic piece on #LongCovid. This is a hybrid event happening in person in NYC (masks required) and virtually! towpwnyc5.eventbrite.com/ @rebeccanagle.bsky.social @wnyc.org

Patients with severe #MECFS need hope in the form of evidence-based interventions, not opinions @binitakane.bsky.social @daltmann.bsky.social @putrinolab.bsky.social @sunny-rae1.bsky.social @davidjoffe64.bsky.social @ahandvanish.bsky.social www.bmj.com/content/389/...