Julia MV

Dark blue textured background with white text that says: “our hearts are with you for long covid awareness month, in love in rage in fear in hope in solidarity. keep loving, keep fighting.” There are teal illustrations of a heart with an awareness ribbon, and a raised fist in front of blooming flowers. Along the bottom edge are the logos for Long COVID Justice and The Sick Times.

Keep loving, keep fighting! #LongCOVIDAwarenessMonth

Background is purple and aqua gradient. Large blue text says: “Using existing medications off-label for Long COVID.” Below this are 4 purple circles with illustrations of brightly colored pills and capsules, a person receiving a vagus nerve stimulus treatment, a syringe, and an oxygen molecule. The footer reads, "Long COVID Essentials, tiny.cc/LCE. A series by The Sick Times x Long COVID Justice."

Have you tried "off-label" meds for Long COVID and associated conditions (LCAC)?

Learn more in this resource from our Long COVID Essentials series, created in partnership w/
@thesicktimes.org: longcovidjustice.org/off-label-meds

An illustration from Long COVID Transformed My Mommy shows two kids in bed with their mother. She wraps them both up in a hug.

An illustration from Long COVID Transformed My Sister Into a Turtle shows a turtle wearing sunglasses and headphones. The text reads, "My mommy is like a turtle that doesn't want to come out of her shell. She avoids loud noises and bright lights. She prefers cozy, quiet places."

We haven’t seen many narratives about — or for — kids whose family members have #LongCOVID. Author and educator Sara Robitaille seeks to change that with her two new children’s books, Long COVID Transformed My Mommy and Long COVID Transformed My Sister into a Turtle. bit.ly/4csWXfE

❤️‍🩹

This is a flyer for the Rest & ME/CFS research study, IRB number 26-6. It says "participate in a survey about rest, energy, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". In the upper right corner it says Questions? Email Study Co-PI Victoria: empwrtc@protonmail.com Below the header is interwoven circles, one is black with text that says Fully Virtual, low- energy version included. The circle behind is an image of white silk wrinkled. Next to it text says To participate you must be: Over the age of 18 AND EITHER Have ME/CFS (self or professionally diagnosed) or be A medical/healthcare provider who has worked with at least one person with ME/CFS, currently practicing or conducting research. Below this it says learn more at www.restandmecfs.com. There are two icons on the bottom left corner. One says ETC and above it are six icon-stick figure people holding hands in a circle. Next to it is Cal Poly Pomona's logo, a diamond with an orangey yellow background and palm trees and a building inside. The Cal Poly Pomona Institutional Review Board has reviewed and approved for conduct this research involving human subjects under protocol IRB 26-6

Hi everyone, I wanted to share a research study I just launched on rest, energy, & ME/CFS, open to people with ME/CFS & medical or healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS. Visit restandmecfs.com for more.

The Long Covid Innovation bill will be heard next in the Maryland Senate! 🥳

If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!

And if you needed a little more time, here it is!

Instructions:

This study is so well done and I can't wait to see the results.

Highly encourage people with ME and those who provide health care for them to participat:
restandmecfs.com

Inflammation, cell and mitochondria damage biomarkers, and links to cognitive dysfunction in #LongCovid relative to recovered controls
www.nature.com/articles/s41...

Long COVID Treatment Trial-Tirzepatide (LoCITT-T): Nutrition and GLP-1s YouTube video by Scripps Research

Nutrition can be highly individual, especially for those with restricted diets, so we encourage you to reach out to your medical team with any individual questions.

And if you are a LoCITT-T participant, you can contact the study team with your questions.

Webinar:
youtu.be/0nVY7cALW2U?...

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Long COVID Treatment Trial-Tirzepatide (LoCITT-T): Nutrition and GLP-1s YouTube video by Scripps Research

Wondering how to meet your nutritional needs while taking a GLP-1 for chronic illness?

Here is the recording of a webinar on this topic:
youtu.be/0nVY7cALW2U?...

This is an educational resource (not medical advice) & if any of the information is not up your alley - feel free to leave it.

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Altered brain connection found in people with ME/CFS and Long COVID - Griffith News People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID experience a disruption to their brain connectivity during a

New research from Griffith University shows people with ME/CFS and Long COVID have altered brain connectivity during cognitively demanding tasks, offering insight into brain fog, memory challenges, and mental fatigue.
🔗 news.griffith.edu.au/2026/01/28/a...

This is simply insane - demanding the removal of a perfectly safe preservative will require changing the entire production and distribution pipeline. For no reason whatsoever.

While the money is held up, tens of thousands of children are at risk of dying from preventable diseases.

Good!

2 million! The scale of people that this review reached is incredible

I can only imagine what the next 3 years of researching and publishing on Long COVID has in store for us 🎢

Postdoctoral Fellow - St. Louis, MO 63106 - Indeed.com Veterans Research and Education Foundation of St. Louis

Please help us spread the word.

We are hiring postdoctoral fellows in Clinical Epidemiology and Pharmacoepidemiology.

Details and application via Indeed.

This has implications for energy limiting conditions, which force folks to increase sedentary time & decrease physical activity:
www.thelancet.com/journals/lan...

"...increases in moderate-to-vigorous intensity physical activity of 5 min/day might prevent up to...10% of all deaths..."

“In genetics and complex disease research, scientists often apply what is known as the extreme phenotype strategy … Studying those at the farthest ends of the spectrum amplifies biological signals and accelerates the discovery of causal pathways and potential drug targets.”

"This inclusion must become the standard, built into how studies are designed, reviewed, and funded. The most severely affected are not on the margins of Long COVID; they represent its truest and most revealing form."

Appreciate Sevda including our work on LoCITT-T as an example ❤️

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"If we truly want to understand this disease, it is these patients, the ones most severely affected, whom we cannot afford to leave behind.

They are not beyond the reach of science; they are where real progress begins."

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Bookshop.org screenshot $44,429,603.55 Raised For Local Bookstores Shows the yellow cover of YEAR OF THE TIGER: AN ACTIVIST’S LIFE by Alice Wong, with a red tiger drawing. A blurb reads: "Alice Wong provides deep truths. Required reading."-Selma Blair, bestselling author of Mean Baby And below text notes Alice is editor of Disability Visibility. Year of the Tiger Alice Wong Ebook $1.99 Red BUY NOW button

If you haven’t read Alice Wong’s memoir yet, the ebook is on sale for $1.99 today at @bookshop.org !

Link: bookshop.org/p/books/year...

Estimated Burden of COVID-19 Illnesses, Medical Visits, Hospitalizations, and Deaths This cross-sectional study estimates the age group-specific burden of COVID-19–associated illnesses, outpatient visits, hospitalizations, and deaths in the US from October 2022 to September 2024.

"the COVID-19 burden continued to have a large impact in the US,
particularly among adults 65 years and older,
underscoring the ongoing importance of prevention measures."

jamanetwork.com/journals/jam...

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Estimated Burden of COVID-19 Illnesses, Medical Visits, Hospitalizations, and Deaths This cross-sectional study estimates the age group-specific burden of COVID-19–associated illnesses, outpatient visits, hospitalizations, and deaths in the US from October 2022 to September 2024.

This post is dedicated to anyone who is considering re-starting masking in public:

"from October 2022 to September 2023, there were an estimated ... 101,300 deaths.
From October 2023 to September 2024, there were an estimated ... 100,800 deaths."

jamanetwork.com/journals/jam...

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Podcasters & social media folks - take a look at this opportunity to do important work with amazing humans!

The expanding landscape of GLP-1 medicines - Nature Medicine This Review discusses the expansion of glucagon-like peptide-1 (GLP-1) medicines beyond type 2 diabetes and obesity, outlining opportunities for new indications, key questions around benefits and long...

Important safety update among the info synthesized here:

"...these analyses do not demonstrate an increased risk of suicidal ideation with use of GLP-1 medicines, with the majority of analyses revealing a similar or lower risk for incident or recurrent suicidal ideation..."

doi.org/10.1038/s415...

Meighan fights SO hard for the Long Covid community—please share/boost/donate if you’re able 🩵

Excellent paper. I really hope #LongCovid researchers implement these recommendations.

This was a labor of love with incredibly knowledgable & thoughtful coauthors:
@leticiasaurus.bsky.social, @ahandvanish.bsky.social, @ezra.zone, Tiffany Walker, @sunsopeningband.bsky.social, @putrinolab.bsky.social, & @michaelpelusomd.bsky.social

cc @patientled.bsky.social

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2) collection of longitudinal data
3) design of a placebo arm to enable comparison of treatment effect relative to disease natural history
4) accounting for, & when feasible, measuring PEM
5) balancing severity, duration, & relevant phenotypes across trial arms & within subgroups to be analysed

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Recommended long COVID outcome measures and their implications for clinical trial design, with a focus on post-exertional malaise Long COVID has created a worldwide public health crisis and has no approved treatments or validated biomarkers. We summarize the current challenges an…

Out today - our recommendations for Long COVID clinical trial design, focusing on currently available outcome measures:
www.sciencedirect.com/science/arti...

We make 5 overarching recommendations for Long COVID clinical trials:
1) thorough characterisation of baseline disease

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