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...
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”
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!
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.
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!
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.
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."
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...
