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Julia MV

@julialmv.bsky.social

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

268 Posts2151 Follower74 Folgt
Eric Topol@erictopol.bsky.social · 2d ago

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...

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...

nature.com

Miles W. Griffis@mileswgriffis.bsky.social · last wk.

"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...

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.

thesicktimes.org

Julia MV@julialmv.bsky.social · last wk.

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_...

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.

surveys.mayoclinic.org

It's ME(Jaime)@exceedhergrasp1.bsky.social · 2w ago

The survey has 100+ unique emergency room narrative responses already! But we're aiming for 150 before we close. If you have a diagnosis of #MECFS or #LongCOVID and have been to the emergency room in the past 10 yrs for your symptoms, I hope you'll take the survey. And if you don't, please share!

Julia MV@julialmv.bsky.social · 2w ago

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

victoria@vashetc.blacksky.app · 2w ago

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.
victoria@vashetc.blacksky.app · 2w ago

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)

Julia MV@julialmv.bsky.social · 2w ago

"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 · 2w 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.”
betsy ladyzhets 😷@betsyladyzhets.bsky.social · 3w ago

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...

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) ...

thesicktimes.org

Felicity Nelson@frogsandstars.bsky.social · 3w ago

📣 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.

The Sick Times@thesicktimes.org · 3w ago

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.

The Sick Times@thesicktimes.org · 3w ago

🚨🙀‼️: Our summer fundraiser ends tomorrow at midnight and we need your help to cross the finish line! We’re aiming to gain 88 more Supporters. Monthly donors, even at $1 a month, help us in our mission in becoming a more sustainable newsroom.

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

"'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."

betsy ladyzhets 😷@betsyladyzhets.bsky.social · 3w ago

Today @thesicktimes.org: Experimental peptides are being advertised for Long COVID, but there's very limited evidence behind them. Jamie Ducharme explores what peptides are and why experts recommend caution:

Oni Blackstock, MD MHS@oniblackstock.bsky.social · 4w ago

"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...

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

theguardian.com

betsy ladyzhets 😷@betsyladyzhets.bsky.social · 4w ago

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 --

The Sick Times@thesicktimes.org · 4w ago

There's less than a week left to snag this exclusive sticker pack — designed by designed by Dimitrea Tokunbo and Grae Salisbury — when you become a Sick Times Supporter! Join today and help us keep our vital Long COVID journalism going! the-sick-times.fundjournalism.org/donate/

Thermometer graphic in which The Sick Times' fundraising goal is represented by a row of pixelated hearts, as you might see in an old-school video game. The hearts are all black outlines, and the first one on the left is filled in with a little bit of red. Text above the hearts reads: "The Sick Times - Goal: 200 new monthly supporters." Underneath the hearts, there is a cartoon drawing of a field with flowers.
Julia MV@julialmv.bsky.social · 4w ago

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

The Lancet@thelancet.com · last mo.

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..."
The Lancet@thelancet.com · last mo.

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..."
Patient-Led Research Collaborative@patientled.bsky.social · last mo.

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/

Julia MV@julialmv.bsky.social · 2mo ago

My unfiltered comments: “It’s easier in a lot of cases to get the right to die approval than it is to get the disability support...what are we even doing as a society?” ... The cumulative number of LC cases is also increasing, according to the study, which Vogel said is “exactly what we expect.” 1/2

Billy Hanlon@bhanlon15.bsky.social · 2mo ago

Bloomberg Law: 'Long Covid Underdiagnosis Poses Broader Care, Coverage Hurdles' news.bloomberglaw.com/health-law-a...