We just got published! 🥳
"Brainstem dysfunction as a potential etiology of #MECFS and #LongCovid: A mechanical basis” by Jeff Wood, @thosvarley.bsky.social @hiimjakekthx.bsky.social @artasemita.bsky.social @tessfalor.bsky.social @kaufmanmd.bsky.social
www.sciencedirect.com/science/arti...
1/6 🧵
A so-called shitstorm led me to study the extensive protocols of Joshua Leisk a bit further. It will still take time until people understand how important his scientific work is.
Chapter 2.2.6: Welcome to my glycogen dump 😂👇🏼.
@tessfalor.bsky.social
#mecfs
A purple and blue graphic with bubbles, depicting a QR code in the upper left hand corner and the Renegade Research logo in the upper right hand corner. Center and lower left depicts photos of Drs. Douglas Kell, Resia Pretorius, Jill Schofield and Jordan Vaughn. White text reads: Research Roundtable: Hypercoaguability, Clotting and Microclotting, and Blood Issues in ME/CFS and Long Covid. Friday, March 13, 2026, 1 pm ET US. Register: tinyurl.com/renres-03-13-2026. Renegade-Research.org.
Join us March 13 at 1 pm ET (US) for a Research Roundtable with @resiapretorius.bsky.social of @suhealthsci.bsky.social @liverpooluni.bsky.social, @dbkell.bsky.social of @liverpooluni.bsky.social, Jordan Vaughn of MedHelp, Jill Schofield of @cuanschutz.bsky.social
🧵Registration link, research below
We held a Volunteer Info Session today for people wanting to volunteer for Renegade Research!
Resources below include the volunteer session recording and slideshow, past recordings and research presentations, volunteer application, newsletter signup, published research, YouTube channel, more
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Volunteer Info Session recording: www.youtube.com/watch?v=H40w...
@tessfalor.bsky.social, @isabelrb.bsky.social, @ellybrosius.bsky.social, @katboniface.bsky.social, @mayalongcovid.bsky.social with org overview, volunteer work, current/future projects
Slideshow: docs.google.com/presentation...
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This is coming up this Saturday at noon ET.
Join us to meet our awesome team and learn out how you can get involved!
The Amatica team is doing amazing patient-led decentralized work.
Can't wait to hear more on the 21st!
Andrew works in the Zhu lab, which develops technologies using mass spectrometry-based metabolomics, in combination with advanced chemometrics, for the sensitive, reliable and non-invasive detection and monitoring of human diseases.
Andrew Gold, a PhD student at Ohio State, saw the fundraiser posts, thanks to everyone sharing them, and reached out to me to offer lower cost metabolomics testing.
Exciting news! The community raised enough money to cover all of the samples for David Esteban's study. We don’t have to raise the full $7k, because a lab has offered to run them for lower cost! 🙌
Total so far is $4,356 of $7,000 goal raised! Pls donate if possible - every $5 matters - more than double the impact of this PASC (Long Covid) metabolites study (lab closed that was to process the samples). This research will likely help people with ME/CFS as well and other populations. #medsky
Wow! Making good progress on this fundraiser @tessfalor.bsky.social 😊 Just a little more to go folks... donations of any size will help complete this very important #longCovid study!
The majority of the work has been completed on this #longCovid research project... just needs a little push to button-up. Read more and donate if possible as below per @tessfalor.bsky.social who is one of the participants in the study!
This is just a pilot/feasibility study, but maybe we will find some clues to follow up on with larger N & more controlled testing. Even if we don't, we will come out with new skills & a more connected team. It's going to be so fun!
We pride ourselves on decentralized studies, but this one will save a lot of money by coming together for it & analyzing our own samples, rather than mailing in samples.
Dates are set! May 13-19. #InnovationInn
5 patient-scientist team members will come to my house to run self-experiments related to Post Exertional Malaise (PEM)/Post Exertional Symptom Exacerbation (PESE) & do real-time analysis of our samples.
Hey y’all—David Esteban’s @patientled.bsky.social funded Long Covid study has hit a snag just before the finish line—the cost to process samples went up. They’ve collected 43 but now can only run 20. $7000 would cover the rest!
Thanks so much for giving or boosting!
Yay! Thanks for sharing and donating!
The $7k would amplify the study's impact on understanding Long COVID!
Read more about the study and donate here: www.zeffy.com/en-US/fundra...
A new company can analyze the samples, but it’s double the cost, so doesn’t fit into the budget.
He has funding for only 20 of the 43 collected samples. If we can raise $7k more we can run the additional 23 samples, though!
The hardest part of the study has been completed. 43 samples are at Vassar, collected from Long COVID patients all around the US.
... and then we found out that the planned metabolomics company can no longer run the samples.
The proposal was funded & I was fortunate to become a patient rep for it, along with @themegascope.bsky.social 🥳
Side note: this was another cool aspect of the Patient Led process. Each project that was funded was given 2 patient reps to give input at all stages.
My favorite proposal was by David Esteban at Vassar, a cost-effective study of microbial metabolites in Long COVID using decentralized at-home sample collection. The possible impact/cost ratio was huge!
3 years ago I joined a panel of patients to determine how to allocate $4.8 million to Long COVID, ME/CFS, & dysautonomia research (the @patientled.bsky.social research fund).
It was an amazing experience working with patients like @ahandvanish.bsky.social @themegascope.bsky.social & many more.
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Round Table on lactate levels in #MECFS and #LongCovid! 👇
Thank you @sunsopeningband.bsky.social @ciarawrightphd.bsky.social @tessfalor.bsky.social @isabelrb.bsky.social @katboniface.bsky.social @doc4care.bsky.social and everyone else from @renegaderesearch.bsky.social for your great efforts!
Bio photo of Steve Smith, MD You are invited to attend our next Renegade Research #Clinician Roundtable on April 11, 2025 ✅️ Dr. Smith will discuss his hypotheses about how venous disorders may underlie some cases of POTS, fibromyalgia, ME/CFS, migraine, brain fog, IBS, vulvodynia, ADHD + more. https://us06web.zoom.us/webinar/register/3817419991507/WN_stWTJAMYRse9wUGUsDwm-Q#/registration
You are invited to attend our next Renegade Research #Clinician Roundtable on April 11, 2025
✅️ Dr. Smith will discuss his hypotheses about how venous disorders may underlie some cases of POTS, fibromyalgia, ME/CFS, migraine, brain fog, IBS, vulvodynia, ADHD + more.
us06web.zoom.us/webinar/regi...
Near Ann Arbor, Michigan
Nice. This is great! Thanks for putting together
