Sign in

Julia MV

@julialmv.bsky.social
2.2K followers 75 following 284 posts

Long COVID patient-researcher @ Scripps Research & Patient-Led Research Collaborative

PostsRepliesMedia
Reposted by Julia MV
Kristian G. Andersen @kgandersen.bsky.social · 14m
This is the worst news I have heard in a very long time - what a tragic loss. @helenbranswell.bsky.social was, unquestionably, _the_ best in the field and just a wonderful person. Condolences to her family and colleagues - she'll be sorely missed. www.statnews.com/2026/10/13/h...
statnews.com
Helen Branswell, whose reporting on infectious diseases and public health drew acclaim, dies at 69
Helen Branswell, STAT's infectious disease reporter who earned the respect of experts and public health officials with her accessible, prescient dispatches, has died at age 69.
1277
Reposted by Julia MV
Kristian G. Andersen @kgandersen.bsky.social · 08/10/2026
"... “We’re not funding Kristian Andersen and that virologist crew,” the [HHS] official was quoted as saying [...] Science has confirmed that Andersen’s team applied for continued CREID funding but did not get a new award." Indeed. With a specific focus on Ebola, Hantaviruses, Mpox, and Lassa.
31921
Reposted by Julia MV
The Sick Times @thesicktimes.org · 07/10/2026
Researchers, clinicians, and advocates gathered for the inaugural conference of the International Society for Long COVID and Post-Acute Infection Syndromes in the Netherlands in late August. Read more from @davetuller1.bsky.social: thesicktimes.org/2026/10/06/b...
Collage graphic featuring a photo of buildings along a canal in Amsterdam, a cluster of tulips, an anatomical diagram showing the human brain and spinal cord, and a diagram of microbes, interspersed with colored blocks in golden and light green. The text reads, “The Sick Times. Biological pathways and mechanistic trials centered at new Long COVID conference in Amsterdam. By David Tuller. Reporting.”Key points you should know:

In late August, the International Society for Long COVID and Post-Acute Infection Syndromes hosted its inaugural gathering in Amsterdam. Hundreds hobnobbed in the H’ART Museum, a major cultural and conference facility in the heart of the city.
 
Presenters acknowledged that a series of clinical trials had produced disappointing results. They focused on seeking lessons from the null findings and called for more smartly designed trials targeting the pathological mechanisms believed to be involved.Some presenters highlighted innovative use of electronic wearables and remote monitoring in an effort to improve research and accurately track biological events, such as the occurrence of post-exertional malaise.
 
PROBE-PASC, a program centering mechanistic trials for Long COVID funded by the U.S. Department of Defense, was revealed during the conference.
13514
Reposted by Julia MV
betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 06/10/2026
Today @thesicktimes.org: @davetuller1.bsky.social recaps the recent ISLC-PAIS conference in Amsterdam, featuring clinical trial updates, talks on PEM, and more. thesicktimes.org/2026/10/06/b...
thesicktimes.org
Biological pathways and mechanistic trials centered at new Long COVID conference in Amsterdam - The Sick Times
Researchers, clinicians, and advocates gathered for the inaugural conference of the International Society for Long COVID and Post-Acute Infection Syndromes in the Netherlands in late August. The four-...
03518
Reposted by Julia MV
Kristian G. Andersen @kgandersen.bsky.social · 05/10/2026
Just a friendly reminder that plague is prevalent, including in the western United States (see, prairie dogs), with multiple cases annually. It is also highly treatable and, yes, lab acquired infections (incl. fatal cases) have happened over the years, including e.g., UChicago.
1725289
Reposted by Julia MV
Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
Screenshot of the header of a published paper: 

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands
1017572
Reposted by Julia MV
betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 01/10/2026
Have you done The Sick Times' reader survey yet? We plan to use the results to inform future stories, updates to our website, and more! www.surveymonkey.com/r/SS6ZH8S
0139
Reposted by Julia MV
Eric Topol @erictopol.bsky.social · 01/10/2026
In the new @science.org special issue on women's health, a 5★ review of menopause hormone therapy to promote healthy aging science.org/doi/10.1126/...
science.org
Reframing menopause and menopause hormone therapy as opportunities for healthy aging
Menopause is an important biological transition with up to 72 symptoms that shapes aging trajectories across organs and encompasses ~40% of the female lifespan. Although menopause awareness is increas...
116663
Julia MV @julialmv.bsky.social · 01/10/2026
The effect would have to be very large to be significant at the sample size (20 intervention, 10 sham). Correction for testing multiple hypotheses considers whether the result could be significant by chance. The method used here (FDR) compares the observed p-value to the expected distribution. 2/2
140
Julia MV @julialmv.bsky.social · 01/10/2026
These results are interesting, and I'm glad the device is moving to a larger trial. For the patients reading this, note that none of the results remained significant after correcting for testing multiple hypotheses. This is not surprising given it was primarily a feasibility study. 1/2
Screenshot of the "neurocognitive outcomes" portion of the manuscript noting "none of these differences remained significant after FDR correction.
161
Reposted by Julia MV
Miles W. Griffis @mileswgriffis.bsky.social · 29/09/2026
"John Richard Green, who is imprisoned in Texas, wrote that, w/ Long COVID, his health is “more messed up than the floor of a New York cab...Now I am bedbound, sick, and all alone." Vital feature by @octoberk.bsky.social about the disease's invisibility in prison. thesicktimes.org/2026/09/29/i...
thesicktimes.org
I interviewed five people with Long COVID in prison. They are invisible in the system. - The Sick Times
While there are no data sources on Long COVID in prison, experts suspect rates of the disease may be higher there than in the general population. They face high reinfection risks and poor access to me...
16836
Julia MV @julialmv.bsky.social · 28/09/2026
Cross-posting from IG, some thoughts on my experience becoming a wheelchair user (more of the story is on IG) www.instagram.com/p/DdwbVp1kbg...
Text on image: I want to share some of my (joyful!) experience becoming a wheelchair user

Image is me (a white woman with a brown hair in a pixie cut wearing glasses, a blazer, and dress pants) sitting in my wheelchair in a hotel room.Text on image: My dad has used a wheelchair my whole life, so I viewed them as normal & even fun.

Photo from the 80s of me and my twin brother (we are maybe 3 years old) on our dad's lap while he's in his wheelchair. We are all white people with dark brown hair.Text on image: This has power assist, which is analogous to an e-bike. Now I can get up ramps without exhausting myself.

Photo of the back of my wheelchair where you can see the smart drive power assist.Text on image: I still miss out on a lot, but I'm grateful for all that my wheelchairs have allowed me to access (purple heart emoji)
I encourage anyone wondering whether they could benefit from a mobility aid to give it a try.

Photo is me in my chair, my husband, and my daughter (with a scientist emoji over her face) at a children's museum. We're taking a photo in a mirror that says "You're looking at FUTURE SCIENTIST". I'm sitting in my wheelchair wearing purple pants and a maroon winter coat, with my snail purse on my lap. My husband and I are wearing N95s.
0141
Reposted by Julia MV
It's ME(Jaime) @exceedhergrasp1.bsky.social · 25/09/2026
Can't believe this wasn't broadcast more broadly, but it looks like #CDC is looking for someone to do... symptom cluster characterization in #MECFS. Deadline is today. 😅 I know who your supervisor would be, and they're legit. PhD required. www.zintellect.com/Opportunity/...
zintellect.com
Zintellect - Centers for Disease Control and Prevention (CDC) - CDC ME/CFS Data Analysis and Symptom Characterization Fellowship - CDC-2026-0028
*Applications will be reviewed on a rolling-basis. CDC Office and Location: A research opportunity is available in the Centers for Disease Control and Prev
12921
Reposted by Julia MV
It's ME(Jaime) @exceedhergrasp1.bsky.social · 21/09/2026
Applications are open for the NextGen IACC Scholarship!Trainees create original research projects using a pre-existing chronic disease dataset in this funded, mentor-led research opportunity. MS, PhD, & MD/PhD trainees in a Canadian uni by the start of 2027 can apply www.meaction.net/scholars-pro...
meaction.net
IACC SCHOLARS PROGRAM | #MEAction
The NextGen IACC Scholars Program is a funded research training and mentorship opportunity for graduate students at Canadian universities. Trainees will develop and lead an original research project u...
01513
Reposted by Julia MV
Ruth Ann Crystal @drruth.bsky.social · 21/09/2026
Whoa! 98% of airport air samples had COVID in them!😷 This week: 🦠 Gut microbiome tracks with Long COVID onset 💊 Bezisterim helps Long COVID subgroups in Phase II 🏛 Kennedy renews vaccine attacks ⏳ HHS delays kids' COVID shots What are we missing? 👉 Read the Dr. Ruth Report buff.ly/Bh6sGTi
An illustrated medical-news graphic titled “COVID isn’t just ‘out there.’ It’s in the air.” An airport with a plane and airborne coronavirus particles appears at the top. Five topics are shown below: 98% of airport air samples detected SARS-CoV-2 RNA; gut dysbiosis tracks with Long COVID; bezisterim shows gains in Long COVID subgroups; Kennedy renews vaccine attacks; and HHS delays kids’ COVID shots. Footer reads “Dr. Ruth Report 9/20/26.”
15719
Reposted by Julia MV
Patient-Led Research Collaborative @patientled.bsky.social · 16/09/2026
“Having the capability to help the community, I feel a moral obligation to use my skills for that purpose, because I feel like there’s reason for hope. And I want other people to know that—to feel that hope.” — @julialmv.bsky.social
smithsonianmag.com
For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief
Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers
0158
Reposted by Julia MV
Ezra S @ezra.zone · 15/09/2026
Big news in the Long COVID world: "In pre-specified subgroup analyses...patients with greater baseline burden on one or more symptoms (approximately 78% of trial participants) demonstrated statistically significant improvements on multiple clinically coherent endpoints."
investors.bioviepharma.com
BioVie Announces Topline Results from Phase 2 ADDRESS‑LC Trial Evaluating Bezisterim for the Treatment of Neurological Symptoms Associated with Long COVID
Statistically significant benefits observed in bezisterim-treated Long COVID patients in pre-specified subgroups with high baseline fatigue, cognitive impairment, and/or post‑exertional malaise Bezist...
34015
Reposted by Julia MV
It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪 Talk 1: bsky.app/profile/exce...
37237
Julia MV @julialmv.bsky.social · 08/09/2026
Thank you for the emotional exertion warning :)
151
Julia MV @julialmv.bsky.social · 08/09/2026
I'm featured alongside colleagues from UCSF in this overview of Long COVID research and reasons for hope for the future: www.smithsonianmag.com/innovation/m... There's an audio version on apple news (behind a paywall unfortunately): apple.news/AxJhSAYZ3Sze...
Julia (a white woman with a mostly brown [some gray] hair in a pixie cut wearing a teal short sleeved shirt, jeans, and glasses) sitting in her wheelchair reaching for raspberries, her mother (a white woman with short gray hair wearing white glassses and a white blouse with yellow flowers on it) stands nearby with a container of blueberries. They are in a (very brightly lit for photography purposes) wood paneled kitchen with white countertops.
1299
Reposted by Julia MV
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 01/09/2026
Three cheers for the incredible @julialmv.bsky.social 👏🏻🥳 And to the wonderful UCSF team featured as well! @michaelpelusomd.bsky.social Gratitude to these Long Covid researchers & to @smithsonianmag.bsky.social for covering them 🙏
02911
Reposted by Julia MV
C.H. Romatowski @chromatowski.bsky.social · 07/09/2026
This Smithsonian magazine piece featuring my friend @julialmv.bsky.social is one of the best popular accounts I’ve read of Long Covid and the current state of science. Highly recommend.
smithsonianmag.com
For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief
Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers
011855
Reposted by Julia MV
Eric Topol @erictopol.bsky.social · 31/08/2026
On #LongCovid and profiling my colleague @julialmv.bsky.social @smithsonianmag.bsky.social www.smithsonianmag.com/innovation/m...
smithsonianmag.com
For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief
Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers
6257128
Reposted by Julia MV
Eric Topol @erictopol.bsky.social · 28/08/2026
Self-directed antibodies are found in people with #LongCovid. A key source of these was identified, and these autoantibodies and cell origin are also seen in lupus. @cp-immunity.bsky.social www.cell.com/immunity/ful...
422391
Reposted by Julia MV
The Sick Times @thesicktimes.org · 25/08/2026
To help us grow our newsletter, we’re trying out a referral program. We think this will make it easier for readers like you to share the newsletter with other community members. But we need your help to test it out!
Original artwork by Heather Hogan sharing the reward options for The Sick Times' newsletter referral campaign. Cartoon-style drawings in small boxes with white borders making them look like stamps show a thank-you note, the reward for one referral; a sticker on a water bottle, as stickers are the reward for five referrals; and a dad hat, the reward for 10 referrals. Below the stamps, there are drawings of The Sick Times' team -- Miles Griffis, Heather, and Betsy Ladyzhets, with Betsy's dog Jacko in between her and Heather. Text above those drawings note that the reward for 20 referrals is a Q&A with the team.
23425
Reposted by Julia MV
Patient-Led Research Collaborative @patientled.bsky.social · 25/08/2026
PLRC member @julialmv.bsky.social published a piece in @thelancetinfdis.bsky.social highlighting how quickly her team completed recruitment for the LoCITT-T clinical trial. They recruited 1,000 people in less than two months — a feat many other trialists doubted was possible. 1/
Screenshot of The Lancet Infectious Disease article titled "Rapid recruitment for a remote long COVID clinical trial" by Julia Moore Vogel.
Graph with text below that reads, "Figure Long COVID Treatment Trial Tirzepatide daily enrolment"
32414
Reposted by Julia MV
C.H. Romatowski @chromatowski.bsky.social · 25/08/2026
“A direct-to-participant, siteless infrastructure can … reach severely affected participants who are routinely excluded by site-based designs.” #LongCovid
1143
Reposted by Julia MV
Ezra S @ezra.zone · 25/08/2026
What's so cool about this to me (disclaimer: I have a small, compensated role on this project) is that it shows how trials don't just need to test innovative treatments – they need to have innovative operations to fully represent the spectrum of people affected.
0103
Julia MV @julialmv.bsky.social · 24/08/2026
For more details - read the preprint or attend a talk by Romina Foster-Bonds on Thursday at the ISLC-PAIS conference in Amsterdam (islc-pais.org). 8/8
islc-pais.org
ISLC-PAIS Conference 2026 in Amsterdam
The ISLC-PAIS Conference brings together reseachers, clinicians and patient leaders working together to improve outcomes for people with Long COVID and other PAIS.
151
Julia MV @julialmv.bsky.social · 24/08/2026
This manuscript is just beginning the peer review process; we wanted to share it at this stage so that others can build on these processes to conduct more inclusive, efficient, cost-effective trials. 7/8
150
Julia MV @julialmv.bsky.social · 24/08/2026
We polled stakeholders on their expected results of the trial. This can provide context when interpreting results. The mean and median predicted changes are near the limit of what we expect to be powered to detect. 6/8
130
Julia MV @julialmv.bsky.social · 24/08/2026
We share operational lessons learned that other LC trials and digital/remote trials in general can build on, with thoughts on ways to decrease participant burden, clarify blinding expectations, and improve regulatory processes. 5/8
150
Julia MV @julialmv.bsky.social · 24/08/2026
We enrolled 2.5x faster than the next fastest LC trial, & our cost per participant was less than 1/10th as NIH-funded LC clinical trials. We recognize trial procedures can have a significant impact on cost, & suggest that centralizing capabilities when possible can improve efficiency. 4/8
152
Julia MV @julialmv.bsky.social · 24/08/2026
We compared LoCITT-T baseline data to other Long COVID (LC) cohorts and found that our trial enrolled a more severely affected cohort. The next most severe trial (on a percentage difference basis) was Yale’s PAX-LC trial, which was also remote. 3/8
140
Julia MV @julialmv.bsky.social · 24/08/2026
The goal of this manuscript is to share how we are conducting the first fully-remote trial of an injectable drug, and to compare the enrollment timeline and cost to other clinical trials. 2/8
130
Julia MV @julialmv.bsky.social · 24/08/2026
New preprint from LoCITT-T describing our protocol and lessons learned. www.medrxiv.org/content/10.6... Thank you to all LoCITT-T participants for their efforts and engagement, and to all caregivers who supported their participation. 1/8
medrxiv.org
Insights from a double-blind, randomized, direct-to-participant intervention trial for Long COVID
Background. Long COVID affects an estimated 400 million people worldwide, and is associated with low quality of life. Nearly all completed Long COVID clinical trials reported no benefit, and most requ...
32210
Reposted by Julia MV
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 24/08/2026
Wow. Just skimming this paper & it’s extremely validating. All the ways we’re pressured & shamed into hiding our reality & apt emotions due to affective injustice. I feel it in almost every interaction I have with anyone who doesn’t have ME. It’s that omnipresent. link.springer.com/article/10.1...
link.springer.com
ME/CFS and the emotional toll of persistent disbelief: from epistemic to affective injustice - Medicine, Health Care and Philosophy
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating chronic illness whose sufferers are frequently met with disbelief, stigmatization, and psychologization in both clinical a...
55620
Reposted by Julia MV
Eric Topol @erictopol.bsky.social · 24/08/2026
Good review on Postural Orthostatic Tachycardia Syndrome (POTS) today @jama.com jamanetwork.com/journals/jam...
616958
Julia MV @julialmv.bsky.social · 21/08/2026
This description of living with severe ME is so spot on: "All you can do is hope to outlast the storm without going under."
0176
Reposted by Julia MV
NPR @npr.org · 14/08/2026
Just like all previous summers since the pandemic began, COVID-19 cases are ticking up again, even while other health threats make more headlines. n.pr/45oln5k
n.pr
Is there a summer COVID-19 surge this year? Yep, it's ramping up again
Just like all previous summers since the pandemic began, COVID-19 cases are ticking up again, even while other health threats make more headlines.
24671363
Julia MV @julialmv.bsky.social · 14/08/2026
So excited for you! My top question was who do I call if it breaks. Make sure they teach you how to transport it. If there's anti-tip, learn how to disengage it in case you need to go over something steep. I hope they ordered you a good cushion! If not they should order another.
110
Julia MV @julialmv.bsky.social · 10/08/2026
On the consequences of de-funding ongoing clinical trials (gift link): www.nytimes.com/2026/08/10/o... "Stopping a study midway doesn’t make the question disappear. It means we may never get the answer, even after taxpayers have paid millions toward finding it."
nytimes.com
Opinion | Medical Breakthroughs Are a Thrill. Then Comes the Hard Part. (Gift Article)
The Trump administration has dismantled the agency that ensures that research makes its way into medical practice.
0104
Reposted by Julia MV
Eric Topol @erictopol.bsky.social · 05/08/2026
Severe Covid leads to persistent viral reactivation, with >10 different viruses noted in the first 40 days after hospital admission. Long Covid was specifically associated with reactivation of latent Anelloviridae virus @nature.com www.nature.com/articles/s41...
nature.com
Virus reactivation in acute and long COVID-19 - Nature
Chronic reactivation of distinct herpesviruses and anelloviruses occur during acute and long COVID-19, and track with disease severity, inflammation and outcomes, revealing immune signatures with prog...
9444210
Reposted by Julia MV
Miles W. Griffis @mileswgriffis.bsky.social · 28/07/2026
"The idea that exercise is the best medicine for all people with POTS still lingers. As Davenport noted, “We need to interrogate who has the fear here. We can’t be afraid of not exercising.” @sweetsciencewriter.bsky.social's write up on the DI conference for TST 🫀 thesicktimes.org/2026/07/28/d...
thesicktimes.org
Dysautonomia conference centers biomarkers and post-exertional malaise - The Sick Times
The 14th annual Dysautonomia International conference outside Houston included presentations on the role of autoimmunity in dysautonomia and a biobank initiative for POTS research.
25117
Julia MV @julialmv.bsky.social · 28/07/2026
I submitted an ER story - and was glad to know that Jamie and the @meactnet.bsky.social team will put the experience to good use. I encourage others with ME and LC to share ER their stories here: surveys.mayoclinic.org/jfe/form/SV_...
surveys.mayoclinic.org
Qualtrics Survey | Qualtrics Experience Management
The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.
1152
Reposted by Julia MV
Ezra S @ezra.zone · 27/07/2026
Hats off to @julialmv.bsky.social and the entire LoCITT-T team for making the impossible possible. www.thelancet.com/journals/lan...
thelancet.com
Rapid recruitment for a remote long COVID clinical trial
There have been few long COVID clinical trials relative to the burden of disease,1 and even fewer have been accessible to people with more severe illness.2 As a person who has had moderate-to-severe l...
2165
Julia MV @julialmv.bsky.social · 27/07/2026
The story of rapid recruitment for our tirzepatide trial is now published in Lancet ID: www.thelancet.com/journals/lan... "Although the large-scale interest in LoCITT-T met my expectations, I had not anticipated the influx of kind words about the trial from the [Long COVID] patient community." ❤️
thelancet.com
Rapid recruitment for a remote long COVID clinical trial
There have been few long COVID clinical trials relative to the burden of disease,1 and even fewer have been accessible to people with more severe illness.2 As a person who has had moderate-to-severe l...
0197
Reposted by Julia MV
victoria @vashetc.blacksky.app · 27/07/2026
Hey folks, I'm a researcher with ME/CFS & I am sharing an opportunity to participate in a research study. The study is open to people with ME/CFS, medical or healthcare providers, and researchers who have had at least one patient/person with ME/CFS. Visit restandmecfs.com for more!
flyer says IRB number 26-6. Questions? Email study co-pi Victoria: empwrtc@protonmail.com.

Are you a researcher or medical provider working with peopel who have ME/CFS? Participate in a patient-led research study! 

TO participate you must be: over the age of 18 AND be a current healthcare provider or researcher who has worked with at least one person with ME/CFS

Learn more at www.restandmecfs.com

The Cal Poly Pomona IRB has reviewed and approved for conduct this research involving human subjects under protocol IRB 26-6.
23939
Reposted by Julia MV
California Department of Public Health @capublichealth.bsky.social · 24/07/2026
Going on a trip? Don’t let COVID-19 crash your summer plans. Wearing an N95 mask protects you from respiratory viruses like COVID-19. Consider wearing a mask in indoor and crowded places like airports and planes. Learn more: go.cdph.ca.gov/respiratory-viruses
424386
Reposted by Julia MV
victoria @vashetc.blacksky.app · 21/07/2026
Looking to speak with any Black folks in New Mexico, Arizona, Missouri, Maryland, Arkansas, Kansas, Oklahoma, Tennessee, Washington, Florida, Georgia, Alabama, or Colorado (whew) who have had their Medicaid or SNAP benefits abruptly canceled! (I’m writing about how AI systems are denying benefits)
5238297