Julia MV

@julialmv.bsky.social

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

@kgandersen.bsky.social Oct 8, 2026, 6:41 PMReposted by @julialmv.bsky.social

"... “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.

@thesicktimes.org Oct 7, 2026, 4:08 PMReposted by @julialmv.bsky.social

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.

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.

@betsyladyzhets.bsky.social Oct 6, 2026, 4:53 PMReposted by @julialmv.bsky.social

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...

@kgandersen.bsky.social Oct 5, 2026, 5:43 PMReposted by @julialmv.bsky.social

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.

@chloedecanson.bsky.social Oct 5, 2026, 1:54 PMReposted by @julialmv.bsky.social

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

@betsyladyzhets.bsky.social Oct 1, 2026, 5:29 PMReposted by @julialmv.bsky.social

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

@erictopol.bsky.social Oct 1, 2026, 6:45 PMReposted by @julialmv.bsky.social

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/...

@julialmv.bsky.social Oct 1, 2026, 3:50 PM

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

@julialmv.bsky.social Oct 1, 2026, 3:50 PM

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.

@mileswgriffis.bsky.social Sep 29, 2026, 6:31 PMReposted by @julialmv.bsky.social

"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...

@julialmv.bsky.social Sep 28, 2026, 5:07 PM

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.

@exceedhergrasp1.bsky.social Sep 25, 2026, 2:57 PMReposted by @julialmv.bsky.social

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/...

@exceedhergrasp1.bsky.social Sep 21, 2026, 4:05 PMReposted by @julialmv.bsky.social

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...

@drruth.bsky.social Sep 21, 2026, 8:15 PMReposted by @julialmv.bsky.social

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.”

@patientled.bsky.social Sep 16, 2026, 8:04 PMReposted by @julialmv.bsky.social

“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

@ezra.zone Sep 15, 2026, 11:51 AMReposted by @julialmv.bsky.social

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."

@exceedhergrasp1.bsky.social Sep 11, 2026, 5:32 PMReposted by @julialmv.bsky.social

Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪

Talk 1: bsky.app/profile/exce...

@julialmv.bsky.social Sep 8, 2026, 7:02 PM

Thank you for the emotional exertion warning :)

@julialmv.bsky.social Sep 8, 2026, 6:50 PM

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.

@emilyesfraser.bsky.social Sep 1, 2026, 12:14 AMReposted by @julialmv.bsky.social

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 🙏

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