Julia MV

@julialmv.bsky.social

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

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.

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.

Julia MV@julialmv.bsky.social · 3w ago

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

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."

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.

nytimes.com

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." ❤️

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...

thelancet.com

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.

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)

"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

The Sick Times@thesicktimes.org · 2mo ago

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. thesicktimes.org/2026/07/20/a...

A digital illustration shows a woman lying on a bed, an eye mask covering the top half of her face. She is wearing a tank top and has short, tightly curled hair. The illustration is all in grayscale and has a somber air. The text reads, “The Sick Times. Abandoned by our governments, people with severe ME and Long COVID are supported by severely ill peers. Mari, a Black Canadian woman with severe myalgic encephalomyelitis (ME), is supported by fellow people with ME in the absence of institutional care. By Whitney Fox.”

📣 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.