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
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
0129
Reposted by Julia MV
Eric Topol @erictopol.bsky.social · 23h
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...
215057
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...
16435
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.”
15519
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
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
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...
616858
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 · 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
Julia MV @julialmv.bsky.social · 21/07/2026
"Like Mari, many disabled people rely on others to meet their most basic survival needs. When adequate support from governments and medical systems is not available, this level of dependency places disabled people at high risk of neglect, exploitation, and abuse." 1/3
13016
Reposted by Julia MV
#MEAction Network @meactnet.bsky.social · 20/07/2026
Are you someone with myalgic encephalomyelitis/chronic fatigue syndrome #MECFS or #LongCOVID who’s been to the emergency room at least once over the past 10 years for your symptoms? Clinical care needs your voice! Take the Emergency Department research survey: surveys.mayoclinic.org/jfe/form/SV_...
04940
Reposted by Julia MV
betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 16/07/2026
This is a delay from estimates shared earlier in the year -- at the January RECOVER-TLC webinar, speakers said that the LDN and GLP-1 trials would potentially start this summer. thesicktimes.org/2026/01/23/n...
thesicktimes.org
New RECOVER-TLC trials won’t enroll until summer. Nearly two years after the program’s launch. - The Sick Times
The RECOVER-Treating Long COVID initiative is set to begin enrolling participants in new clinical trials this summer, which will mark nearly two years after the National of Institutes of Health (NIH) ...
163
Reposted by Julia MV
Felicity Nelson @frogsandstars.bsky.social · 17/07/2026
📣 I’m writing a story with The Sick Times focusing on why there are no clinical guidelines for treating children with #LongCOVID and how this affects families. If you're a family affected by Long COVID, feel free to get in touch - felicity.nelson@frogsandstars.com.
06442
Reposted by Julia MV
The Sick Times @thesicktimes.org · 15/07/2026
Today’s the final day of our summer sustainability fundraiser and we could really use your help! Sign up to become a monthly donor at any amount, and keep our Long COVID journalism going.
03422
Julia MV @julialmv.bsky.social · 14/07/2026
"'I don’t think it’s wise for people with Long COVID, or anyone for that matter,' to take the risk of trying unapproved peptides, @erictopol.bsky.social said. Research on peptides & Long COVID is in progress, including some conducted by Topol. But at the moment, marketing hype is outpacing science."
1239
Reposted by Julia MV
Oni Blackstock, MD MHS @oniblackstock.bsky.social · 13/07/2026
"This program gives Black single moms $1,000 a month for a year. The results are undeniable. The Magnolia Mother’s Trust is the first to target low-income families led by Black mothers in Jackson, Mississippi" www.theguardian.com/us-news/2026...
theguardian.com
This program gives Black single moms $1,000 a month for a year. The results are undeniable
The Magnolia Mother’s Trust is the first to target low-income families led by Black mothers in Jackson, Mississippi
6364156
Reposted by Julia MV
betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 10/07/2026
If you appreciate our independent journalism at The Sick Times, please consider starting a monthly donation to help us keep this work going! And as a bonus, we'll mail you these incredible stickers --
0178
Reposted by Julia MV
Ardem Patapoutian @ardemp.bskyverified.social · 08/07/2026
I did this. Took 5 minutes.
094
Julia MV @julialmv.bsky.social · 08/07/2026
It's the last week to comment on this disastrous proposal. I commented & encourage everyone to add your voice to the 49K others here by end of day July 13th: www.regulations.gov/commenton/OM... If you're not sure what to write, this post has helpful guidance: drruth.substack.com/p/a-guide-to...
regulations.gov
Regulations.gov
1108
Reposted by Julia MV
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 04/07/2026
Their work really is invaluable! Please share & support if you can 🩵
02117
Reposted by Julia MV
The Sick Times @thesicktimes.org · 06/07/2026
Who else is investigating pandemic-fueled injustices, challenging powerful government and medical institutions, combing through the latest Long COVID research, and translating COVID-19 data into weekly updates? Will you support our vital work? the-sick-times.fundjournalism.org/donate/
A fundraiser tracker with heart containers over a sky over an illustrated field of flowers. The trackers is 25% full.
03125
Reposted by Julia MV
The Lancet @thelancet.com · 24/06/2026
On May 29, a new rule was proposed by the US Government that would fundamentally reshape federal research funding. In a letter, Nancy Krieger calls for the global public health & medical community who share concerns about the rule to act before the 45-day comment window closes: spkl.io/633257ECmd
Quote from a Correspondence published in The Lancet. Quote reads: "This new rule seeks to establish, as regulations, practices involving political censorship of research and political micromanagement of federal funding that the administration has already tried to impose..."
0106
Reposted by Julia MV
Patient-Led Research Collaborative @patientled.bsky.social · 23/06/2026
Our asks for future phenotyping work: ✅ report sensitivity to algorithm choice & subsampling, not just internal scores ✅ capture the full breadth of symptoms, including severity and trajectory ✅ integrate biomarkers to define real endotypes, not just symptom boundaries 14/
1104
Reposted by Julia MV
Patient-Led Research Collaborative @patientled.bsky.social · 23/06/2026
Even when two methods both found a "high symptom burden" cluster, they didn't contain the same patients. A patient could land in a high-burden neurocognitive cluster under one algorithm and a generic multi-system cluster under another. 5/
131
Julia MV @julialmv.bsky.social · 23/06/2026
New paper analyzing wearable data in RECOVER: www.sciencedirect.com/science/arti... We found statistically significant differences indicative of worse cardiopulmonary fitness in those with high Long COVID Research Index scores across step count, heart rate, heart rate variability, & activity. 1/3
sciencedirect.com
250