Julia MV
@julialmv.bsky.social
1.9K followers 69 following 150 posts
Long COVID patient-researcher @ Scripps Research & Patient-Led Research Collaborative
Posts Media Videos Starter Packs
julialmv.bsky.social
Absolutely - will share the link once we are ready to recruit.
Reposted by Julia MV
chromatowski.bsky.social
I helped road test this and am so excited for it!

Join the waitlist to be alerted when enrollment starts: longcovid.scripps.edu
julialmv.bsky.social
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
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
julialmv.bsky.social
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
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
julialmv.bsky.social
"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....

2/2
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.
bmcpediatr.biomedcentral.com
julialmv.bsky.social
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....

1/2
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.
bmcpediatr.biomedcentral.com
julialmv.bsky.social
“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.”
Reposted by Julia MV
erictopol.bsky.social
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...
Reposted by Julia MV
sciencevs.bsky.social
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...
julialmv.bsky.social
“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...
Long Covid Risk for Children Doubles After a Second Infection, Study Finds
www.nytimes.com
julialmv.bsky.social
“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...
julialmv.bsky.social
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!
ezra.zone
the lack of recognition and support i've received – from the medical system, from my friends & family, from government, from orgs that purport to support the vulnerable & suffering – is so immense as to be unbelievable.
Reposted by Julia MV
longcovidfam.bsky.social
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.
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...
people.com
julialmv.bsky.social
There's so much exciting work summarized in this post.

I'm particularly excited about the advances in continuous protein monitoring (CPM).
Reposted by Julia MV
Reposted by Julia MV
emilyesfraser.bsky.social
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!
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
julialmv.bsky.social
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
PALM1 Ebola Treatment Trial

August 2018: Ebola outbreak in the DRC
Nov 2018: enrollment starts with Remdesivir, MAb113, Control
Jan 2019: protocol amended to add REGN-EB3
July 2019: protocol amended to increase sample size
Aug 2019: interim analysis led to recommendation to only keep MAb114 and REGN-EB3 arms ACTT COVID-19 treatment trials
Stage 1: Feb 21, 2020 - May 8, 2020
Stage 2: May 8, 2020 - Aug 5, 2020
Stage 3: Aug 5, 2020 - Dec 20, 2020
Stage 4: Dec 20, 2020
julialmv.bsky.social
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...
The title says prioritizing the individual. There's a picture in the center of an unbalanced scale with the left heavier than the right. To the left is text that's says: planning for confounding variables, internal and external validity, and finding constraints. To the right is text that says planning for: well being of trial participants, long term health impact.
julialmv.bsky.social
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.
Reposted by Julia MV