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:

hey folks, its your neighborhood cripple :( i have to see an urgent specialist friday for a possible infection. bc its so last min but not the ER i cant get medicaid to cover transport. if you'd like to donate to help me pay for a $440 gurney transport i'd REALLY appreciate it. venmo: itssvee or gfm

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!

If you are a provider or recipient of IHSS in California and want to be interviewed via email or text-based communications please PM me or comment below! I’m looking to talk to 2-3 people who would be impacted by the budget cuts proposed by Newsom!

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/...

Can’t make it to our Long COVID meeting this August? 🧠🌍 No problem — stream it LIVE from anywhere! 🎥 Join top global experts diving deep into Long COVID + related conditions. 🔗 Register: keysym.us/KSLongCOVID26 #KSLongCOVID26 #LongCOVID @virusesimmunity.bsky.social @ahandvanish.bsky.social

Today @thesicktimes.bsky.social: I talked to @ahandvanish.bsky.social about the upcoming @keystonesymposia.bsky.social Long COVID & post-acute infection syndromes conference this summer, of which she's one of the co-organizers! thesicktimes.org/2025/05/09/a...

The Sick Times: '“A morale boost”: Looking ahead to the 2025 Keystone Symposia Long COVID conference with Hannah Davis' 'Leading Long COVID researchers will gather in Santa Fe, NM for a major conference on Long COVID & other post-acute infection syndromes' thesicktimes.org/2025/05/09/a...

The Sick Times managing editor @betsyladyzhets.bsky.social talked to @ahandvanish.bsky.social about the upcoming @keystonesymposia.bsky.social Long COVID and post-acute infection syndromes conference. It will take place in Santa Fe, New Mexico from August 10 to 13. bit.ly/3GNmulP

Last chance to shine at #KSLongCOVID26! Submit your abstract/scholarship application by May 13, 11:59 PM MST to join top experts in infectious disease, immunology, & Long COVID research. Submit/apply now: keysym.us/KSLongCOVID26 #KSLongCOVID26 @virusesimmunity.bsky.social @ahandvanish.bsky.social

3.5 years ago I landed my dream job the summer before getting my PhD. I uprooted my life & moved to DC. In 2022 I became ill & disabled after a Covid infection. I never recovered. I worked until January 2024 then went on disability after my 5th infection & hospitalization. Today was my last day 🧵

If you’re in LA and know someone who sublets their place please lmk!

Being a part of @patientled.bsky.social since the beginning has been such an important part of my life over the past 5 years. The work we do has huge impact - please support it with a donation if you are able to.

Dr. Wes Ely: "Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID." 6/

Dr. Michael Peluso: "Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research." 5/

Dr. Ziyad Al-Aly: "PLRC has been a transformational force in Long Covid. These people are my heroes & I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the PLRC survey...made us pursue Long Covid research and advocacy." 4/

Without ongoing funding, PLRC will have to scale back our work after August. Please consider donating if you're able, or send to folks who would like to support us. We feel indebted to our community and are grateful to you all! 💓 bit.ly/plrc-donate 9/