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👇
16.02.2026 19:18 — 👍 46 🔁 18 💬 1 📌 0In 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.”
31.01.2025 20:02 — 👍 26 🔁 7 💬 2 📌 1
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...
18.01.2026 17:07 — 👍 260 🔁 83 💬 10 📌 4
"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
08.01.2026 20:04 — 👍 11 🔁 2 💬 0 📌 0
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
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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!
PLRC logo on the top left, large decorative PLRC logo on the white background, text in the middle on a purple background that reads, "YOUR GIFT GOES TWICE AS FAR (in white font), We're thrilled to announce that thanks to two generous donors, all donations made to PLRC will be matched up to $100K through January 1. (in black font with gold highlight), patientresearchcovid19.com/donate (at the bottom in blue)
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.
24.09.2025 22:27 — 👍 21 🔁 6 💬 1 📌 0Please 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:
24.09.2025 23:13 — 👍 18 🔁 14 💬 0 📌 1
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."
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/
🚨🧵 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...
site map with sites located in Silver Spring, MD — DMV area, Jacksonville, Florida, Farmington, MI, Dallas TX, and Columbus, GA
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/
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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 !!!!!
09.07.2025 21:55 — 👍 21 🔁 13 💬 1 📌 0
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!
26.06.2025 18:21 — 👍 12 🔁 5 💬 0 📌 0
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...
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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!
