Julia MV

Home - Long COVID Treatment Trial The Long COVID Treatment Trial is a research platform run by scientists at Scripps Research dedicated to accelerating discoveries for the effective treatment of Long COVID.

The link to the waitlist is on our website here: longcovid.scripps.edu

Direct waitlist links are:
English: mydatahelps.org/e/LOCITT/Wai...
Spanish: mydatahelps.org/e/LOCITT/Wai...

Absolutely - will share the link once we are ready to recruit.

I helped road test this and am so excited for it!

Join the waitlist to be alerted when enrollment starts: longcovid.scripps.edu

Screenshot from webinar: Title: one-slide summary [LoCITT logo & thumbnail of me speaking] We are planning a suite of digital trials to treat Long COVID We expect the first one to launch this fall In this first trial half of participants will receive placebo; this is essential for producing data that will be taken up by the medical community. Our goal is to make the trials as accessible & inclusive as possible We will conduct this work with the urgency that the public health crisis of Long COVID deserves And we will include other infection-associated chronic conditions, whenever possible. We will return personalized information to participants Real-time wearable data, information generated from blood samples To be notified when each trial launches, join the waitlist at longcovid.scripps.edu

Overcoming trial design challenges Table with parallel challenges & solutions: Challenge: Heterogeneous presentation Solution: Match eligibility criteria to intervention & Power trial to detect subgroup effects Challenge: Don’t understand cause & effect Solution: Conduct mechanistic trials that can help disentangle Challenge: Lack of biomarker Solution: Utilize sensitive survey outcomes & wearable data Challenge: Many are housebound/bedbound Solution: Bring trials to participants

First trial size and metrics Randomized, double-blind placebo controlled trial in 1,000 participants Table of outcome types and metrics: Primary: Fatigue Severity Scale (FSS) Secondary: FUNCAP27, DSQ-PEM, EQ-5D-5L Exploratory: Wearable data (step count, heart rate, variability, resting heart rate, max heart rate), demographics, medication compliance Biosample (50 participants): 3 clinical labs, proteomics

Ways LoCITT centers on participants You can complete study activities from wherever you are We work to minimize participant burden Secondary outcomes were selected for validation for future trials Our first user testers were 2 people with very severe symptoms Thank you to Catherine Romatowski and a second anonymous tester! Participants choose how they communicate with the study team 24/7 phone line for time-sensitive matters, video calls, emails, etc. We share a letter to help coordinate with your health care provider(s) We welcome caregivers to support you in completing study tasks

We are excited to open enrollment for the Long COVID Treatment Trial (LoCITT) soon!

We designed the first trial to be accessible & inclusive as possible. People across the US can participate from bed!

To sign up for the waitlist and/or watch our webinar recording, visit: longcovid.scripps.edu

Experiences of living with long COVID during childhood and adolescence: a qualitative study from the child’s perspective - BMC Pediatrics Background In February 2023, the World Health Organization (WHO) defined long COVID in children, highlighting limited knowledge about its psychosocial impact. Studies show it as a complex, long-lasting condition affecting multiple systems. WHO and researchers emphasise the need for more understanding, particularly its effect on daily life. The aim of this study was to explore how life is experienced and how it changed whilst living with long COVID during childhood. Methods We present a qualitative study with an inductive and exploratory approach. Between October 2022 and March 2024, 16 children between 9 and 18 years old diagnosed with long COVID were interviewed face-to-face using a semi-structured interview guide. The results were analysed using reflexive thematic analysis by Braun and Clarke. Results The results present the subjective reality of children suffering from long COVID and their struggle in daily life. The findings are presented through three themes: Losing my foothold, Fatigue decides my path, and My way forward, illustrating a temporal and emotional journey, reflecting how children make sense of their experiences, adapt to the persistent impact of long COVID, and gradually move toward acceptance. Conclusions This study addresses the lack of knowledge of long COVID in the society, how it affects children in their struggle to find a new path in life. It also shows that, with knowledge and support, the symptoms and the burden of the condition can decrease or even pass. It is important that people around these children, including health care, school and family, use this knowledge to promote health and avoid educational, health and social problems at a vulnerable time in life.

"I know my dad had a hard time understanding. He thought I was just making it up, like, ‘Oh, she’s making it up, she’s not really feeling bad,’ and so on."

"I don’t really dare to have dreams anymore…my first goal or dream is to get better."

bmcpediatr.biomedcentral.com/articles/10....

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Experiences of living with long COVID during childhood and adolescence: a qualitative study from the child’s perspective - BMC Pediatrics Background In February 2023, the World Health Organization (WHO) defined long COVID in children, highlighting limited knowledge about its psychosocial impact. Studies show it as a complex, long-lasting condition affecting multiple systems. WHO and researchers emphasise the need for more understanding, particularly its effect on daily life. The aim of this study was to explore how life is experienced and how it changed whilst living with long COVID during childhood. Methods We present a qualitative study with an inductive and exploratory approach. Between October 2022 and March 2024, 16 children between 9 and 18 years old diagnosed with long COVID were interviewed face-to-face using a semi-structured interview guide. The results were analysed using reflexive thematic analysis by Braun and Clarke. Results The results present the subjective reality of children suffering from long COVID and their struggle in daily life. The findings are presented through three themes: Losing my foothold, Fatigue decides my path, and My way forward, illustrating a temporal and emotional journey, reflecting how children make sense of their experiences, adapt to the persistent impact of long COVID, and gradually move toward acceptance. Conclusions This study addresses the lack of knowledge of long COVID in the society, how it affects children in their struggle to find a new path in life. It also shows that, with knowledge and support, the symptoms and the burden of the condition can decrease or even pass. It is important that people around these children, including health care, school and family, use this knowledge to promote health and avoid educational, health and social problems at a vulnerable time in life.

This qualitative study of LC in children and adolescents includes heartbreaking quotes like:

"The friends she had before are not there anymore because, as she puts it: 'they got tired of me not being able to do so much anymore.' "

bmcpediatr.biomedcentral.com/articles/10....

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“My termination, unfortunately, shows that the leaders of H.H.S. and the National Institutes of Health do not share my commitment to scientific integrity and public health,” Dr. Marrazzo said. “Congress must act to protect scientific research from those who would serve political interests first.”

Children and teens who had a Covid reinfection had a doubling of #LongCovid risk (PASC) and a significant increase in many other adverse outcomes (Figure) www.thelancet.com/journals/lan...

This moment from our latest episode with science writer @edyong209.bsky.social is 🔥

We asked Ed — how do we talk up the benefits of science in the face of government cuts? He told us that's the wrong approach. 🧪

Listen wherever, or watch on Spotify 👇

open.spotify.com/episode/7Evh...

Long Covid Risk for Children Doubles After a Second Infection, Study Finds

“Just because you got through your first infection & didn’t develop long Covid, it’s not that you are completely out of the woods,”
...
some patients “develop new symptoms after subsequent infections or worsening of their pre-existing long Covid symptoms”

gift link:
www.nytimes.com/2025/09/30/h...

“Being vaccinated decreases your risk of subsequent infections & development of long Covid,” Dr. Yonts said, adding, “It gives your body a leg up on its immune response & preventing this aberrant, overactive immune response...”

gift link:
www.nytimes.com/2025/09/30/h...

This thread is a top notch snapshot of what it's like to live with LC in 2025 🔥

Anyone can help by masking, testing, supporting your community, and raising your voices alongside ours.

Happy three years of surviving LC to @ezra.zone!

Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you. - The Sick Times Some people with Long COVID are receiving potentially unhelpful diagnoses of functional neurological disorder (FND), a condition in which people experience neurological symptoms that cannot be attribu...

Today @thesicktimes.org: in-depth feature by the great @davetuller1.bsky.social about why many Long COVID experts and patients say functional neurological disorder (or FND) is an unhelpful diagnosis, and what to do if you want to push back on this diagnosis yourself.

Violet Affleck, Ben Affleck and Jennifer Garner’s Daughter, Speaks About the Impacts of COVID in U.N. Address Violet Affleck, the daughter of Ben Affleck and Jennifer Garner, delivered an impassioned speech in favor of clean air and masking to prevent the transmission of long COVID-19 in an address at the Uni...

Thank you, Violet Affleck, for using your voice at the United Nations to call for clean air and masking — and especially for naming children with #LongCOVID. Too often, kids are left out of these conversations. Families are grateful to see their children’s realities recognized on the global stage.

Kennedy’s HHS commits to Long COVID, but without clear funding - The Sick Times Following two roundtable discussions with leading researchers and government officials — but limited patient engagement — HHS announced a public awareness campaign and medical resource platform

📣: Today the government committed to prioritizing #LongCOVID, but didn't announce any new funding - a major ask of advocates and researchers.

@betsyladyzhets.bsky.social & I reported on today's Long COVID roundtable for @thesicktimes.org ⬇️

thesicktimes.org/2025/09/18/k...

Invisible Illness: Leading the Way on Long COVID Invisible Illness: Leading the Way on Long COVID -- U.S. Department of Health and Human Services (HHS) | http://www.hhs.gov http://www.Twitter.com/HHSGov | http://www.Facebook.com/HHS http://www.Ins...

Buckle in, folks. #LongCOVID

www.youtube.com/live/-eorSN8...

There's so much exciting work summarized in this post.

I'm particularly excited about the advances in continuous protein monitoring (CPM).

I’d be so grateful if #MedSky would share this—it’s a really quick way to get up to date with a common and debilitating outcome of Covid infection.

Stop looking for a silver bullet. Start mixing the Long COVID cocktail. - The Sick Times Here’s what keeps me up at night: If some people are finding relief, why aren’t we scaling what might work? And why aren’t we trying multiple interventions at the same time?

💊➕: Combination therapies effectively treat a variety of disease & conditions. @atranscendedman.bsky.social writes that a cocktail of drugs is necessary for Long COVID.

"Single-drug approaches feel almost quaint in the face of such biological complexity."

thesicktimes.org/2025/09/12/s...

Chronic Infections and Inflammation in ME/CFS UCSF ME/CFS Study UCSF is completing a study looking at immune markers in patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) If you have been diagnosed with ME/CFS we could use your help! We need volunteers who: Have been diagnosed with ME/CFS Are over 18 years old Are willing to come for an in-person visit at our UCSF If interested, please email CHIME@ucsf.edu to let us know! Include your first name, last name, and preferred contact information

Michael Peluso’s team at UCSF is looking for pre-Covid #pwME in the SF Bay Area. I've heard great things about their Long Covid work and suspect this study will be fruitful!

Slides presented by Jason Liang at RECOVER-TLC day 2 showing the type of timeline I would have hoped to see given the level of funding available

Start to initial results in one year

Highly recommend that anyone planning clinical trials for people with post-exertional malaise review this talk.

The video is linked below & full transcript here: vashetc.com/supporters/p...

With $300M, RECOVER-TLC reported being unsure whether they can fund more than the 4 trials announced today after a year of planning.

This is shockingly inefficient.

They should be able to run a platform with at least 10 trials.

Patients & taxpayers deserve more urgent & effective action.

RECOVER-TLC announces new Long COVID clinical trials, receives mixed reactions from patient community - The Sick Times Some Long COVID advocates and researchers, including those who advised the National Institutes of Health’s initiative, say RECOVER-TLC isn’t living up to its promised ambition.

NEW @thesicktimes.org: RECOVER-TLC announces new clinical trials, responses from the Long COVID community are mixed.

"Overall if [the first] round of trials was D grade, I’d put this in B- territory," said @loscharlos.bsky.social.
thesicktimes.org/2025/09/09/r...

Tweet from Loui (they/them) @louidirect I have tasted chronic illness and I have tasted masking and I recommend masking

Sums it up.

Help needed from LC pals!

The CURE ID survey, where you report meds and supps you’ve tried, is reopening!

If you’ve reported before, they’d love more info on what *didn’t* work for you, and what you’ve tried more recently.

And if you’re new to this, they want you to join in! Overview below:

"Remember that they’ve each developed their own idiosyncratic strategies to cope,
and that they don’t need to be told to do more or to do less or to approach things differently.

Be gentle.

Disease eventually ensnares all of us; when it happens to you, you’ll crave the same."

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"A few months ago, I told a higher-up at The New York Times—we’re talking very high altitude—that I’d been struggling with long COVID.

His reply: “Is that the excuse everyone at The Atlantic uses when they’re unproductive?”

It was a staggeringly insensitive thing to say."

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School year starts with sick days Covid-19 may be nearing peak. Widespread shrimp recall. Scaled back surveillance of foodborne illness.

- We are likely at or near peak summer Covid
- Sore throats are up, too
- No flu or RSV yet, at least.
- Big recall of frozen shrimp
caitlinrivers.substack.com/p/school-yea...

Reminder that I'm working on a story about the upcoming RECOVER-TLC trials for @thesicktimes.org and would love to hear from more Long COVID community members about what they think of the apparent agent selections. Also interested in talking to people with experience on the working groups. (1/2)