Julia MV
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julialmv.bsky.social
Julia MV
@julialmv.bsky.social
2K followers 71 following 210 posts
Long COVID patient-researcher
@ Scripps Research & Patient-Led Research Collaborative
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julialmv.bsky.social
There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.

There's time for new folks to join!

We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
Map of the US with states colored by the number of LoCITT participants per state: States with 20+ are WA, OR, CA, CO, TX, MD, MO, IL, MI, OH, PA, NY, MA, MD, VA, NC, FL States with 0 are ND, MS, HI The rest have between 1 and 19 participants
November 26, 2025 at 6:40 PM
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
October 7, 2025 at 5:32 PM
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
September 10, 2025 at 4:45 PM
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.
September 10, 2025 at 1:25 PM
julialmv.bsky.social
Today is the day of our Long COVID Treatment Trial (LoCITT) webinar. Hope to see you there!

Register here:
scrippsresearch.zoom.us/webinar/regi...
Same image as the quoted post below - a woman reading on a tablet leaning back on a couch with text noting we are hosting a webinar for LoCITT
August 26, 2025 at 3:11 PM
julialmv.bsky.social
You're invited to a webinar introducing the Long COVID Treatment Trial (LoCITT) on August 26th at 2pm eastern / 11 am pacific:

scrippsresearch.zoom.us/webinar/regi...

We'll talk our remote study design & how you can contribute from wherever you are. There will be lots of time to discuss.
Text: Long COVID Treatment Trial Join Scripps Research for a live webinar introducing the Long COVID Treatment Trial (LoCITT). Register today! [image of a person with dark skin and long dark hair leaning against a couch and looking at a tablet]
August 20, 2025 at 7:11 PM
julialmv.bsky.social
[5 years of LC descriptors continued]

* Worsening health
* Fear of reinfection
* Word-finding mishaps
* No exercise
* Fighting internalized ableism
* Sensory overload
* Internet friends ❤️‍🩹

2/2
Five years of Long COVID means five years of worsening health Five years of Long COVID means five years of fear of reinfection Five years of Long COVID means five years of fighting internalized ableism Five years of Long COVID means five years of internet friends [heart]
July 8, 2025 at 2:58 PM
julialmv.bsky.social
Summarizing 5 years of Long COVID with a mix of devastating & lighthearted descriptors.

Five years of Long COVID means
Five years of…
* Ruthless prioritization
* Failed treatments
* Humility
* Long COVID denialism
* Missing out
* Muscle necrosis
* Naps
* Asking for help
* Dressing for comfort

1/2
Five years of Long COVID means five years of ruthless prioritization Five years of Long COVID means five years of failed treatments Five years of Long COVID means five years of muscle necrosis Five years of Long COVID means five years of Long COVID denialism
July 8, 2025 at 2:58 PM
julialmv.bsky.social
As a bonus - we included an optional survey that grew out of my attempt to visualize how people with ME (which about half of people with Long COVID have) spend their time, and how that varies with illness severity.

Soon, instead of a cartoon, we'll be able to use real data!

2/2
A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.
June 23, 2025 at 4:05 PM
julialmv.bsky.social
Here is the final version of our research demonstrating that providing at-home COVID-19 tests, along with on-demand telemedicine and rapid prescription delivery can reduce COVID ICU stays in immunocompromised people:

authors.elsevier.com/sd/article/S...

Thank you to all study participants!

1/4
Screenshot of the linked publication page: Mayo Clinic Proceedings: Innovations, Quality & Outcomes Volume 9, Issue 3, June 2025, 100627 Original article A Randomized Trial of At-Home COVID-19 Tests, Telemedicine, and Rapid Prescription Delivery for Immunocompromised Individuals Authors: Julia Moore Vogel PhD, Ting-Yang Hung BS, Erin Coughlin BS, Felipe Delgado BS, Vik Kheterpal MD, Giorgio Quer PhD, Eric Topol MD
May 27, 2025 at 3:21 PM
julialmv.bsky.social
It's always a joy to listen to a lecture by @erictopol.bsky.social

He is discussing preventing aging-related diseases rather than attempting to reverse aging.

He also interviewed a 98-year old patient who discussed her hobbies & that others in her family did not experience the longevity she has.
Screenshot from zoom of a slide saying "Science of Aging" with arrows to "Reversing Aging" and "Preventing Age-Related Diseases", to the right of the slide is the video feed of Eric Topol speaking on stage, wearing a navy blazer (suit?) and light shirt
May 21, 2025 at 11:33 PM
julialmv.bsky.social
I've been thinking about how to explain the challenge of living with ME/CFS and created this cartoon visualization.

Imagine the life of someone without ME is a rainbow of activities that each take a certain amount of energy.

ME limits your energy, and thereby the vibrancy of your life.
A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.
February 23, 2025 at 7:35 PM
julialmv.bsky.social
They were fairly consistently positive, although the intensity varied. I found this relatively reassuring.

Quidel produced a nearly false negative that would lead me to re-test.

Binax seems the most sensitive, which I’ve long suspected since it has the highest concentration of sample.

2/2
Zoomed in image of OHC rapid test (these are the ones we received from the US government) Zoomed in view of four more tests - two of which also include flu A and B Zoomed in view of Binax tests Zoomed in view of Quidel tests - labeled as Walgreens store brand in this case
February 4, 2025 at 6:58 PM
julialmv.bsky.social
Have you ever wondered whether you’d test positive on one COVID rapid test but not another brand?

My little one & I used our recent reinfection to investigate.

Top row is me on day 4 of symptoms, day 2 of testing positive.

Bottom row is her on day 9 of symptoms, day 7 of testing positive.

1/2
An image of 9 COVID-19 rapid tests on a blue hydrangea print table cloth. All tests are clearly positive with the exception of the one in the lower right hand corner.
February 4, 2025 at 6:58 PM
julialmv.bsky.social
COVID wastewater levels are on the rise.

The national average is high & the midwest is very high.

If you're not already, now is the time to re-start wearing high quality masks in public places & testing before you visit high risk individuals.

Image from @cmyeaton.bsky.social's newsletter.
A graph of COVID wastewater levels from October 2024 to January 2025, showing the national average as well as regional data for the northeast, west, midwest, and south. All lines are trending upward in the last week, with the west lagging the others remaining in low, northeast and south moderate, national high, and midwest very high.
January 6, 2025 at 3:31 PM
julialmv.bsky.social
Great to see tips for applying for disability benefits from @thesicktimes.bsky.social

This is a notoriously difficult process to navigate and I hope to see it reformed

thesicktimes.org/2024/12/03/w...
Comerford’s tips for disability benefit applications: Comerford recommends that people applying for benefits extensively document their symptoms. Medical tests such as neuropsychiatric testing and cardiopulmonary exercise testing are her recommended method for documentation, though she acknowledges that these tests can be expensive. Comerford suggests that applicants should be careful to find lawyers and medical providers who have experience with these cases and won’t dismiss their symptoms. During the appeals process, Comerford recommends requesting a company’s administrative record and combing through it for any evidence that they abused judgement, cherry-picked evidence, or made other errors in assessing the case. Make sure to follow deadlines for filing appeals, as cases are closed if documents are not submitted on time.
December 3, 2024 at 7:22 PM
julialmv.bsky.social
Excellent figure summarizing LC PharmD's TREATME survey's 3,925 people w/ LC &/or ME

Largely aligns with anecdotal reports

Most helpful are fluids/electrolytes, pacing, compression stockings, antihistamines, etc

Most harmful is graded exercise therapy (GET)

www.medrxiv.org/content/10.1...
Figure 2. Patient-Reported Outcomes of Treatments in ME/CFS and Long COVID. A. The leading treatments and categories that contributed to improving patients' overall conditions as reported in self-assessments. The data within parentheses next to each treatment indicate the number of responses provided on the treatment, the false discovery rate adjusted p-value compared to the reference treatment, and the Net Assessment Score (NAS). The stacked bar plots show the percentages of patient responses related to the perceived treatment effect of each treatment, spanning from "much worse" to "much better". Orange shading denotes the percentage of patients who reported a positive treatment effect—with darker orange indicating a stronger positive effect—whereas blue shading indicates adverse side effects, with darker blue representing more significant negative effects. Vitamin C (oral, non-liposomal) was used as the reference treatment. Of all the treatments investigated, Graded exercise therapy (GET) received the lowest NAS score. B. Impact of treatments on patient symptoms as reported in self-assessments. For each of the core symptoms, shown in a gradient scale is the proportion of respondents of a treatment who also reported the impact of the treatment improving the specific symptom.
December 3, 2024 at 2:22 PM
julialmv.bsky.social
Inspired by: www.pewresearch.org/short-reads/...
Bar graph from the linked story re: reasons people are not getting updated COVID vaccines
November 25, 2024 at 4:43 PM
julialmv.bsky.social
Our new preprint:

"In immunocompromised individuals & those at least aged 65 years, access to at-home COVID tests, telemedicine, & rapid Paxlovid delivery reduced the ... need for ICU care;

this has the potential to reduce the cost of COVID care."

www.researchsquare.com/article/rs-5...
Article A randomized trial of at-home COVID-19 tests, telemedicine, and rapid prescription delivery for immunocompromised individuals Julia Moore Vogel, Ting-Yang Hung, Erin Coughlin, Felipe Delgado, Vik Kheterpal, Giorgio Quer, Eric Topol Scripps Research Institute & CareEvolution
October 28, 2024 at 12:46 PM
julialmv.bsky.social
This #LongCovidAwarenessDay, the Long COVID Moonshot team created graphics to share stories of people with #LongCOVID.

Mine is below with a July 2020 photo of me with ice on my forehead, two weeks into my acute infection.

Over 100 people shared their stories at: longcovidmoonshot.com
Text on image: Pre-COVID me wouldn't recognize 2024 me. I don't have the energy to be fun, helpful, or active. You know it's a good day if I have the energy to make a joke. My life revolves around when I can go back to laying down in silent darkness. For 3.5 years I've been saying we're 3 to 5 years away from solid treatments. I hope this year is different. Julia Moore Vogel longcovidmoonshot.com Text is overlayed on a black and white image of me laying in bed with ice on my forehead. My wavy brown hair is a mess behind my head :) The photo was taken 2 weeks into my acute infection in July 2020.
March 15, 2024 at 3:43 PM
julialmv.bsky.social
A beautiful, visual description of living with Long COVID including hundreds of hopes for the future, collected from the community.

"It is a constant deluge of pain that slowly strips you of everything you used to be by taking away everything you used to do..."

www.nytimes.com/interactive/...
The author Giorgia Lupi's Long COVID symptoms in 2022 and 2023 summarized with a colorful array vertical brushstrokes. Each day has a thin black horizontal line with vertical brushstrokes showing the symptoms from that day. Each color represents a symptom type. The second half of 2022 is dominated by blue, symbolizing pain. A visualization of the hopes from individuals with Long COVID with each individual's hope, name, and how long they have been sick in a rectangle that looks like a sticky note. Our hopes include being able to date, dance, work, think, help others, and live.
December 14, 2023 at 4:34 PM