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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.
15.02.2026 22:56 — 👍 47 🔁 27 💬 1 📌 1
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...
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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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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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.
23.01.2026 14:40 —
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Good!
20.01.2026 22:04 — 👍 182 🔁 28 💬 5 📌 3
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 🎢
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.”
13.01.2026 19:01 — 👍 33 🔁 13 💬 2 📌 0
"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...
"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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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!
07.01.2026 17:11 — 👍 29 🔁 20 💬 0 📌 0
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 🩵
05.01.2026 16:39 — 👍 12 🔁 13 💬 0 📌 0Excellent paper. I really hope #LongCovid researchers implement these recommendations.
20.12.2025 02:18 — 👍 23 🔁 8 💬 0 📌 0
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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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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Holiday gathering reminder 🎁
If your guests test w/rapids twice before the event, 48 hours apart, it’ll catch 63% of Covid cases even if they have no symptoms. Testing 3x improves that to 79%!
This is how we curb the annual January surge that gave me Long Covid—thanks for protecting yr community 🤍
Great piece by Eric Topol!! A must read.
15.12.2025 06:21 — 👍 3 🔁 2 💬 0 📌 0