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/

Great @thesicktimes.org article on 3 upcoming #LongCovid trials on JAK inhibitors. PLRC did patient engagement and helped shape 1 of the 3 here, REVERSE-LC (baricitinib) led by @weselymd.bsky.social — who also used our scorecards for patient engagement! thesicktimes.org/2025/08/05/t...

So well said.

Really cool news: this study has been expanded to include people whose LC started more than two years ago! Check it out:

This really got me. I think it’s hard to really understand if you haven’t experienced it. Excluding my job, I’ve lost 95% of the awesome life I built. First bit by bit, then suddenly all at once. And I’m better off than many. My path was H1N1-Giardia 🦫-Covid. I pushed thru til it came for my brain.

Today @thesicktimes.org: Takeaways from last week's @keystonesymposia.bsky.social Long COVID & IACC meeting. Danny Altmann said in his closing remarks that the Long COVID field is “coming of age,” and this conference represents an important milestone. By me and @mileswgriffis.bsky.social:

If you struggle with listening or sound, every word Hannah says is printed across the bottom of the video--you can keep the sound off.

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”

In this episode of Still Here: A conversation between @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social comparing and contrasting #LongCOVID and ME clinical trial designs for drugs targeting immune dysregulation and viral persistence. 🎧 Listen now! bit.ly/3JgQFmZ

Incredibly exciting diagnostic tool potential — @immunofever.bsky.social MIT team is doing nailfold capillaroscopies on #LongCovid patients before and after a NASA lean test, and said the results have been incredibly striking compared to controls. My results were very abnormal !

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."

Summaries of presentations made at the recent Patient-Led Research Collaboration (PLRC) @patientled.bsky.social conference solvecfs.org/plrf-event-h... Prepared by Solve ME/CFS Initiative @solveme.bsky.social #LongCovid #MEcfs

Excited to announce that I'll be on the Scientific Committee for the 3rd Long COVID Int’l Conf, Nov 19–21, 2025 in Boston (hybrid). Abstracts due Aug 29! Submit here: virology.eventsair.com/long-covid-i... 🌐 More info: academicmedicaleducation.com/meeting/long...

Excellent article appearing in today's @washingtonpost.com on navigating life with #hiddendisabilities. #LongCOVID #MECFS wapo.st/44OdrdX

1/ "I remember the first meeting [with @patientled.bsky.social] that I went to. I raised my hand on the Zoom call and asked if the speaker could repeat the question. I explained that I was having memory issues": www.healthcentral.com/condition/co...

In this episode of Still Here, we're recapping the Patient-Led Research Fund (@patientled.bsky.social) summer 2025 webinar. Plus, an update about the National Institutes of Health’s RECOVER-Treating Long COVID initiative. bit.ly/4llZFVa

We’ll have a full summary report later this week on key takeaways and highlights. Have questions for researchers? Let us know!

Learn more about the conference her from our interview with co-organizer Hannah Davis. thesicktimes.org/2025/05/09/a...

We’re at the @keystonesymposia.bsky.social on Long COVID and related IACCs! The conference is in Santa Fe, New Mexico and features talks, posters, and workshops from leading researchers 😷🏜️😷

“If this finding holds up with further research, clinicians could use blood tests to screen patients for potential treatment with rapamycin, which ‘would be a huge advance,’ said… trial participant @chromatowski.bsky.social, a member of PLRC” #LongCovid #SevereME thesicktimes.org/2025/07/29/c...

Thank you very much for your efforts to bring about a day when there's no more need to mark Severe ME Day. 10/fin

You can help by supporting—with follows and with dollars—the orgs leading that fight: @meactnet.bsky.social @patientled.bsky.social @openmedf.bsky.social @berlin-buyers-club.bsky.social 9/

On Severe ME Day, my hope is for recognition that this is a humanitarian crisis on a massive scale. I hope everyone aware that this is happening will commit to demanding a commensurate response from government, industry and charitable giving. 8/

Because of decades of neglect by research, there are zero FDA-approved treatments for ME. If you become this ill, you will simply be left this way, for years or decades. 7/

I am close to a worst-case scenario but l am not alone. In the US, some 800,000 people have Severe ME—and climbing, with new Covid-triggered cases every day. 6/

So l am entering my seventh year in a level of isolation the UN defines as torture. 5/

In the early part of the pandemic, there was debate about whether internet contact sufficed to alleviate the harm of solitary confinement. Experts concluded it does not. 4/

The UN defines solitary confinement as torture when it exceeds 22 hours a day for at least 15 days. 3/

This week in August is also the week I became bedbound with Severe ME in 2019. Since then I have spent six years inside four walls. My symptoms allow me about 10 minutes a day of face-to-face contact with another human being. 2/

August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound. 1/

Happening today! Join Dr. Michael Peluso, @ezra.zone & others to hear the latest updates on #LongCovid research & the ADDRESS-LC trial — which will assess the impact of Bezisterim on cognitive impairment/brain fog & fatigue in people with LC. 3PM PT/6PM ET Register: us02web.zoom.us/webinar/regi...

reminder: this is tomorrow! hear me opine on why pharma clinical trials for long covid are good!

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/

1/ My highlights from the very well run webinar of @patientled.bsky.social funded study results on #MEcfs & #LongCovid: bsky.app/profile/pati... Interesting patient directed funding + colab design. But I've focused more on science titbits.

Okay, continuing ... Insulin is also really relevant to norepinephrine in the brain, which the MECFS implications were described by Tamara Carnac in an article the @patientled.bsky.social hypothesis journal. GLP-1 seems to have a big role in lower inflammation, too!

This @patientled.bsky.social webinar was fantastic. If you missed it, I highly recommend checking out the below synopsis (and recordings when they're available). If you are able, please consider donating to PLRC and/or sharing the info with others: plrc.donorsupport.co/page/plrcdon... 1/2

I’ve spent the afternoon watching the @patientled.bsky.social webinar on some of the newest Long Covid & ME research. I lack the technical language to adequately explain what I’m hearing, but fortunately, @thesicktimes.bsky.social has been live blogging!

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 !!!!!

Washington Post: 'What long covid can teach us about future pandemics' 'Experts are worried that despite the hard-won lessons of covid, we are not fully prepared for the next pandemic.' “The reality is that pandemics are going to hit" said Ziyad Al-Aly www.washingtonpost.com/wellness/202...

Starting now !! Join us to hear about the #LongCovid biomedical advances from our $5 million patient-led fund.

This afternoon, @thesicktimes.bsky.social will be live blogging @patientled.bsky.social's Patient-Led Research Fund Webinar. Check back on this article for our takeaways from the research talks: thesicktimes.org/2025/07/09/l...

Join us for our first PLRF Webinar — happening tomorrow at 10:00 am - 2:00 pm PT/1:00 pm - 5:00 pm ET! Hear the latest results and updates from 10 biomedical research projects funded by the Patient-Led Research Fund. Register & agenda: patientresearchcovid19.com/projects/pat... #LongCovid

Register today for our webinar “The ADDRESS-LC Trial: Studying the Impact of Bezisterim on Brain Fog and Fatigue in People with #LongCovid.” Sign up here: us02web.zoom.us/webinar/regi...

@patientled.bsky.social is hosting a free webinar next week, where the results and latest progress from biomedical studies funded by the Patient-Led Research Fund (PLRF) will be presented! When: Thursday July 9th, 2025 | 1PM - 5PM ET Where: Register on Zoom us02web.zoom.us/webinar/regi...

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/

I’m looking to speak with people about their use of metformin for treating COVID. This includes taking metformin during an active infection, or to treat Long COVID. If this sounds like you, please email me at [email protected]

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

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!

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