Great article on a PLRC-funded project! "Her idea has, over time, become a familiar one: an infection which the body failed to clear or deal with properly has left one of the big guns of the immune system–the cytotoxic T-cells–in a state of chronic activation." @cortjohnson.bsky.social #LongCovid

ME/CFS Newsletters: @patientled.bsky.social : 4xde2.r.sp1-brevo.net/mk/mr/sh/1t6... AMMES: berrima.eomail5.com/web-version?...

Our asks for future phenotyping work: ✅ report sensitivity to algorithm choice & subsampling, not just internal scores ✅ capture the full breadth of symptoms, including severity and trajectory ✅ integrate biomarkers to define real endotypes, not just symptom boundaries 14/

Takeaways: 1) Symptoms alone are likely not the best way to define #LongCovid phenotypes. We need more phenotyping by biomarkers! 2) Studies using fewer symptoms, fewer patients, or a single clustering method are likely detecting phenotypes that aren't robust or repeatable. 7/

We have a new paper out! We asked a simple question about Long COVID “phenotypes": if you take the same patients and the same symptoms but run different clustering algorithms, do you get the same patient subgroups? Short answer: no. 🧵 #LongCovid 1/

We have a new paper out! We asked a simple question about Long COVID “phenotypes": if you take the same patients and the same symptoms but run different clustering algorithms, do you get the same patient subgroups? Short answer: no. 🧵 #LongCovid 1/

New paper in @thelancet.com ft. PLRC member Dr. Megan Fitzgerald (@themegascope.bsky.social): "In this paper, a group of bioethicists, clinician-scientists and people.. with #LongCovid argue that it is ethically imperative to conduct trials of disease-modifying treatments for LC now." 🧵

Yes. Yes yes yes yes yes yes yes.

New paper in @thelancet.com ft. PLRC member Dr. Megan Fitzgerald (@themegascope.bsky.social): "In this paper, a group of bioethicists, clinician-scientists and people.. with #LongCovid argue that it is ethically imperative to conduct trials of disease-modifying treatments for LC now." 🧵

Thank you to all the participants, investigators & site staff for their commitment. We are especially grateful to our advisors living with #LongCOVID, and advocacy partners @solveme.bsky.social and @patientled.bsky.social who supported enrollment & participation in the study.

Enrollment is complete in our Phase 2 ADDRESS-LC clinical trial evaluating bezisterim for the treatment of neurological symptoms of Long COVID, with topline data expected in late summer 2026. Learn more: investors.bioviepharma.com/news/news-de...

In this Project ECHO Long Covid Webinar Series, PLRC co-lead @loscharlos.bsky.social talks to Dr. Alba Azola about the evidence suggesting some #LongCovid patients may have undiagnosed vascular compression. Dr. Azola estimates about 15% of LC patients may have some form of vascular compression.

#BlueSunday2026 #TeaPartyForME2026 (My tea is iced this year. 🥵) supporting Open Medicine Foundation @openmedf.bsky.social + monthly support to Patient Led @patientled.bsky.social

I found LDN life-changing. I'm an adult, and they started me at 1.5 mg, and I wanted to die. It was so terrible. I endured, but I wouldn't wish it on anyone. Medical people scoffed that it couldn't be so awful since it's a micro-dose, but the horror...

PLRC has released a letter in response to RECOVER-TLC's decision to retain their proposed dosage & titration schedule for LDN. This decision ignores public feedback, including concerns about slower titration approaches for children with #LongCovid. Read: patientresearchcovid19.com/storage/2026...

Watch the full presentation "Long COVID Web: Patient Perspectives on #LongCovid in Primary Care and Clinical Trials" here: www.youtube.com/watch?v=vYGa...

2. She also shared how PLRC’s work is helping to address these limitations — by incorporating patient expertise to strengthen trial design. Two of our latest papers below aim to address the current limitations in the field 👇 • www.thelancet.com/journals/ebi... • www.thelancet.com/article/S147...

PLRC co-lead @leticiasaurus.bsky.social recently presented on the state of #LongCovid clinical trials — and shared that findings from many trials remain inconclusive due to limitations in study design, most notably the widespread failure to account for post-exertional malaise (PEM).

PLRC co-lead @leticiasaurus.bsky.social recently presented on the state of #LongCovid clinical trials — and shared that findings from many trials remain inconclusive due to limitations in study design, most notably the widespread failure to account for post-exertional malaise (PEM).

This ep of “A Friend for the Long Haul” features PLRC member @kpbanks.bsky.social (DrPH) She describes a study where non-English speakers reported new health symptoms but hadn’t realized they were connected to their COVID infection, largely because information wasn’t available in their language.

This ep of “A Friend for the Long Haul” features PLRC member @kpbanks.bsky.social (DrPH) She describes a study where non-English speakers reported new health symptoms but hadn’t realized they were connected to their COVID infection, largely because information wasn’t available in their language.

PLRC has revolutionised patient-led research and generated ground-breaking long cocid research, in just 6 years. It is just an amazing, inspiring organisation.

This month marks PLRC’s 6 year anniversary!! 6 years ago, we released the survey that would become the first report about #LongCovid - the first data that showed the world its severity. While it always bewilders us how much time has passed, we’re proud of our work. 1/

🧵📄Nouvelle ressource sur le #CovidLong ! Maintenant disponible en français 🇫🇷 Patient-Led Research Collaborative publie sa fiche d'information 2026 sur #LongCovid , basée sur les données scientifiques les plus récentes 👇 @patientled.bsky.social

Long COVID Web: 'Long COVID Web: Patient Perspectives on Long COVID in Primary Care and Clinical Trials' - Dr. Tiffany Walker, Emory Univ. - Dr. Letícia Soares, PLRC www.youtube.com/watch?v=vYGa...

Exciting update! The drive to ask Senators to sign a request for Long Covid funding is going so well that the deadline has been extended to Monday—calls and shares this weekend will continue to help! And 13 Senators have already signed on! Ask yours to join: tinyurl.com/LongCOVIDCall

Please call your senators today! win.newmode.net/longcovidcam... This funding would benefit Long Covid, Dysautonomia, AND ME patients 🩵 Calls help the most but if you can’t call, please email: win.newmode.net/longcovidcam...

📣GREAT NEWS📣 Just spoke to Hill champions: your hundreds of calls & emails are making such a difference, they've extended deadline for Senator sign-on to #FundLongCOVID Dear Colleague letter to MONDAY APRIL 20 10am ET! More @lccampaign.bsky.social details incoming, senators now signed: 1/x

If you're outside the U.S., please share this thread & tag community members/allies so that we get the farthest reach. EVERY CALL matters--regardless of which state someone is in! We need to let Congress know WE ARE STILL HERE and need to #FundLongCOVID in 2027. /end

Calls make the biggest impact...but if you require email, here is a tool that allows you to email✉️ your Senators with the same ask to your two Senators tinyurl.com/LongCOVIDEmail asking them to sign on to the Dear Colleague Letter and #FundLongCOVID in 2027 Appropriations. 7/x

The letter also directs NIH to focus on drug trials, biomarkers, diagnostics, & therapeutics AND to examine/target common LC-related conditions such as dysautonomia, #POTS, & #MEcfs in research that is funded. 6/x

@markey.senate.gov (D-MA), @kaine.senate.gov (D-VA), @duckworth.senate.gov (D-IL) are championing this FY27 "Dear Colleague" letter calling for for $10 million to AHRQ #LongCOVID care Centers of Excellence and $200m to the NIH for LC research. 5/x

Asking your Senators to sign #FundLongCOVID "Dear Colleague" letter is one of most important ways to ask for care & research funding for FY27. While at the same time, we keep up calling for a multi-year authorizing #LongCOVID bill (ie The Ryan White CARE Act for HIV/AIDS) 4/x

As part of "Approps" process, Senators send each other "Dear Colleague" letters to sign on to, which then submitted to relevant Approps committees, asking for that funding & "report language" for the Approps bills that guides spending & accountability for next fiscal year. 3/x

Funding #LongCOVID is a multiple-front fight! As we continue to call for multiyear "authorizing legislation"—a big Long COVID bill—we also must work each year on "Appropriations" or annual funds the US govt spends. The Friday deadline is for Fiscal Year 2027 or "FY27" 2/x

🚨📞CALLS needed TODAY! Final push to get Senators to sign on to $210M to fund LC & related conditions in FY27 budget appropriations. This call tool routes to Senators with a script: tinyurl.com/LongCOVIDCall Leave a msg., if needed. More in 🧵on this #FundLongCOVID campaign.👇

1/ @SenMarkey, @SenTimKaine, and @SenDuckworth are championing a FY27 “Dear Colleague” letter for $210M+ in #LongCOVID research — and it includes #MECFS, #POTS, and #dysautonomia by name. Deadline is FRIDAY. 🧵

US friends ⬇️

If you have the time/energy to make a call by Friday, this is one the best bets for new research funding for #LongCovid. Led by hill wiz @meighanstone.bsky.social — asking your Senators to sign on to this "Dear Colleague" letter is one of most important ways to ask for new funding for FY27.

Please take a few minutes to contact your senators. We need to #FundLongCOVID #LongCovidKids

Please call or email your Senators by close of business Friday 4/17 & ask them to sign on to the “Dear Colleague” letter for Long Covid funding: Call tool: win.newmode.net/longcovidcam... Email tool: win.newmode.net/longcovidcam...

Deadline for this is tomorrow! Make a pair of quick calls to ask your Senators to support funding for Long Covid in FY27 Appropriations! Call tool: tinyurl.com/LongCOVIDCall #LongCovid #NEISvoid

📣U.S. Action Item: #pwLC #POTS #pwME #NEISVoid we need your help! Will you contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations using our EASY low-spoons call/email tool?🧵

"The Guide explains how each treatment may be helpful.. type of LC patient it may help, provides dosages.. study evidence, citations, and in a helpful twist, a list of other ME/CFS and #LongCovid guides which support using the treatment. All of that in a compact, attractive format."

From @cortjohnson.bsky.social: “The free @rthm.bsky.social & @patientled.bsky.social #LongCovid Treatment Guide is one of those publications that makes you wonder, ‘Why hasn’t this been done before?’ A succinct, evidence-based guide drs can quickly turn to learn about LC treatments.”

New paper in @thelancetinfdis.bsky.social from PLRC by @chloedecanson.bsky.social, @leticiasaurus.bsky.social, @chromatowski.bsky.social / @romatowski.bsky.social and Gina Assaf: "The case for routine patient review in #LongCovid research.” 🧵1/11

"Long COVID received 14% of its disability commensurate funding... ME/CFS is the most under-funded condition, receiving <1% of its YLD [years lived with disability] proportionate funding." Plus the LC disability weight of 0.21 likely underestimates its burden. www.nature.com/articles/s43...

🧵⬇️

Those researchers who routinely do patient involvement know the value of the insights of the people who actually have the disease To enable involvement of pwLC at all stages of research @longcovidsupport.bsky.social offer a Research Involvement Consultancy service. www.longcovid.org/research/res...

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