.. from large, randomized trials might support regulatory licensure. Negative results can reveal unforeseen safety issues. In some cases, even negative studies can help identify subgroups of patients" Full paper: www.thelancet.com/journals/ecl...

"Testing more disease-modifying treatments can have major scientific and social value at this time. Positive results from small, proof-of-concept trials can provide the rationale to conduct larger trials and attract much needed private investment in #LongCovid. Positive results..

"Because research budgets are limited, it is ethically imperative to optimize the scientific and social value of funded research. In our view, a pivot to more, well-designed, trials of disease-modifying treatments for #LongCovid follows from this imperative"

"While the pathophysiology of #LongCovid remains incompletely understood, the knowledge gained has helped identify possible disease-modifying treatment targets, including several types of immunomodulatory, neurological, antiviral and other drugs"

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." 🧵

🔥Levinovitz's article is a firestorm of conflation & misrepresentation He tries to reframe the community as toxic gatekeepers, whilst claiming there is a treatment but THEY are keeping it from you. Classic grift It's time to stop blaming patients' fear as being the problem

ok the more I stare at the image of zero studies, the angrier I am. Wired, are you for real? Did you not check for a single study in a reputable journal, first? You're advertising snake oil to desperate people on what? a whim? I assumed a study had come out, at least, even if it was very poor.

Breaking: The FDA appears to have approved the antiviral ensitrelvir (Xocova), which can be used as PEP after being exposed to someone with COVID-19 💊🦠 www.fda.gov/drugs/novel-...

Update: The email of the editor of the Alan Levinovitz Long Covid WIRED article whom letters and concerns can be directed to is available publicly here: jasonkehe.com 💌 [email protected]

Update: The email of the editor of the Alan Levinovitz Long Covid WIRED article whom letters and concerns can be directed to is available publicly here: jasonkehe.com 💌 [email protected]

“When you tell people they aren’t worth protecting, you are telling them they aren’t worthy of love.” Yeah 💔 I encourage currently healthy folks to ask themselves, if my partner doesn’t care about disabling me, can I trust them to care for me after? Is that really a marriage/a world I want?

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.

"A recent preprint study of LDN in children and adolescents with Long COVID that started a treatment regimen at 1.5 mg had a 25% rate of medication discontinuation attributed to side effects" Read full letter: patientresearchcovid19.com/storage/2026...

"We strongly recommend the RECOVER-TLC pediatric LDN trial to use the dose titration regimen recommended by the LDN research trust. We believe this... is the safest and most effective for the pediatric population and will help retain participants through trial completion.

"Many LC patients have described LDN as ‘life-changing’—but there are still too many barriers to getting a prescription, especially for children... However, without careful attention to the medication dosage, the results of this trial may be murky and drop-out rates may be high"

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...

I'm not saying you should go back and read all the statements about SARS-CoV-2 from early 2020. I'm saying public health agencies, virologists, epidemiologists, and health reporters should go back and read their own statements about SARS-CoV-2 from early 2020 and reflect just a little bit.

If all the news about the hantavirus outbreak has you searching for something you can do: wear a mask; and if this passes and it turns out you don’t need it to protect yourself from a hantavirus pandemic, it will still protect you from the ongoing coronavirus pandemic.

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).

The overruling beliefs in the psychosomatic rehabilitation models that have dominated for decades, to widespread disaster, in treating chronic illnesses like this is that we are lazy, unmotivated, forgot that doing normal activities is easy and refuse to try. They even apply this to pro athletes.

"It is clear much of the media has failed to learn important public health messages in discussing viral illnesses that we’ve gleaned from Long COVID and the ongoing COVID-19 pandemic." #CovidIsAirborne #CovidIsNotOver

“I just didn’t want to accept my career was ending… because of COVID… a virus so out of my control… eventually I got to a point where I was like, I’m 15 months in, I’m still housebound, still mostly bedbound, unable to do most basic things.” #LongCovid thesicktimes.org/2026/04/28/p...

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.

We love our community deeply and appreciate the solidarity you’ve shown over 6 years! If you’d like to support our work and research, please see patientresearchcovid19.com/donate/ 3/

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/

In the past year alone, we’ve published 15 papers on #LongCovid topics such as extended use of Paxlovid, access to healthcare in India and outcome measures for clinical trials. We’ve put out an awesome treatment guide, a 2026 fact sheet, and organized international conferences & med ed. 2/

Great news!!! See image 👇 Full 🧵 with list of senators on board: threadreaderapp.com/thread/20452...

Thank you! I just called my Senators @schumer.senate.gov @kirstengillibrand.bsky.social and told them we desperately need #LongCOVID funding 🙏

Thank you @padilla.senate.gov & @schiff.senate.gov for supporting Long COVID & ME patients!

More details about this campaign can be found below /end bsky.app/profile/lcca...

Links again for our free, customizable @lccampaign.bsky.social tools to ask YOUR SENATORS to sign-on to the $210+ million #FundLongCOVID FY27 Appropriations letter: 📞 #FundLongCOVID Senate call tool: tinyurl.com/LongCOVIDCall ☎️ #FundLongCOVID Senate email tool: tinyurl.com/LongCOVIDEmail 5/x

📣📣📣with the deadline extended to Monday, let's keep the emails & calls going! These Senators signed the FY26 #FundLongCOVID letter last year, but haven't yet this year: @kirstengillibrand.bsky.social, @kim.senate.gov , @warnock.senate.gov, @wyden.senate.gov Let's try & grow the list for FY27! 4/x

And these senators have signed on to the #FundLongCOVID letter as well @warren.senate.gov, @welch.senate.gov, & @whitehouse.senate.gov All thanks to your incredible advocacy 👏👏👏3/x

Along with FY27 #FundLongCOVID letter leads @markey.senate.gov @kaine.senate.gov @duckworth.senate.gov, these senators have now signed on too: @alsobrooks.senate.gov, @booker.senate.gov, @klobuchar.senate.gov, @lujan.senate.gov, @padilla.senate.gov, @schiff.senate.gov, @smith.senate.gov …2/x

📣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

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 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

Sending an email took me less than a minute via the link in the thread — if you have the energy, please join me! I’m out of talking spoons today but I’m gonna try to call tomorrow! #FundLongCovid

Re-upping this important advocacy opportunity for Americans because Bluesky was not working yesterday. Deadline is today at end of business day!

#pwLC #pwME #POTS #NEISVoid LAST DAY to call! Easy tool with script that routes to your Senators tinyurl.com/LongCOVIDCall Info in thread about appropriations ask here. Please call, like, and reshare. Email tool in next post (if needed)

Last day!

Study links long COVID in kids to worse grades, attention, and social life www.cidrap.umn.edu/covid-19/stu...

imagine what conscientiously maintained air purifiers and—dare i say—an open window or two could change.

🚨📞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.👇

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.

Why This Campaign Matters 21M+ Americans are living with #LongCOVID — and, right now, there's a critical window to fight for the funding they desperately need. Help us send a powerful message to the Senate that we are still here and we need help NOW. #FundLongCOVID /end