1/ 🚨 Big news: @solveme.bsky.social has awarded @renegaderesearch.bsky.social a Catalyst Award to launch SIGNAL - a decentralized platform to test promising therapeutic devices for ME/CFS and Long COVID. Here's what it means for patients 🧵

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

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 🧵 1/

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... 2/

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!

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!

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!

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. 🧵

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!

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...

Very excited to say that @crunchme.bsky.social's first report is out and about 🙌 The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions Our goal here is to bring together the key info needed to make the case for taking action *now*! drive.google.com/file/d/17fgU...

Imagine scientist-patients getting together for a week to run an experiment. Gathering tons of data and biological samples. It's happening. My house. April or May 2025. @RenegadeRes #RenegadeResearch #InnovationInn #ResearchRetreat 🔬🏡

It's so exciting to see an #MEspine related paper published! Good timing before the #MEspine24 (or I guess now #MEspine25) research roundtable tomorrow! www.frontiersin.org/journals/neu...

Looking forward to the part about "possible treatments in ME/CFS" Jan 24, 2025 1p Eastern US Hosts include @renegaderesearch.bsky.social @tessfalor.bsky.social @isabelrb.bsky.social @richellesepulveda.bsky.social Robert Naviaux, MD. Q. Can NextGen Metabolomics be used to help diagnose CFS? A: Yes!

I've been obsessed with Bob Naviaux's work for a few years now. He takes an evolutionary perspective, which I've been interested in for over a decade. Next Friday he will bring in another of my favorite topics - #MEspine (mechanical spine issues leading to #MECFS Sx) tinyurl.com/4c34kety

We had a great @remissionbiome.bsky.social primary Preliminary results meeting today! Watch the recording: youtu.be/Y4Un2rQLKTw

Let's start the new year with a few people really worth following if you're interested in #MECFS and #LongCovid: @scheibenbogen.bsky.social @putrinolab.bsky.social @sunsopeningband.bsky.social @exceedhergrasp1.bsky.social @isabelrb.bsky.social @tessfalor.bsky.social More ⬇️ go.bsky.app/42cuLif

To prep for @renegaderesearch.bsky.social @tessfalor.bsky.social talk on 1/24/2025, you might scan Dr. Naviaux and his lab's ME/CFS page. (This talk is part 3 in series exploring mechanical, brainstem, and molecular basis hypotheses of ME/CFS.) naviauxlab.ucsd.edu/science-item...

Together, we can lead the way toward understanding, treatment, and ultimately, long-term remission. Help us keep up the momentum! 👉 Donate today: zeffy.com/en-US/fundra... (To make a larger donation or donate crypto DM @tessfalor.bsky.social) 6/8

Exciting news this Giving Tuesday! We’re excited to announce that our nonprofit, Renegade Research, has been awarded a grant from Vitalik Buterin's Kanro Filantropic Fund to kickstart 8 innovative patient-led research projects focused on #MECFS & #LongCOVID. 1/8

Since the COVID-19 pandemic washed over the world, institutions have utterly failed to reckon with the grim reality of Long COVID. In response, patients and citizen scientists have stepped up to do the science NIH won't. #Science #LongCOVID #SciComm, synergies.substack.com/p/doing-the-...

We're all so different with how we respond to medications & other supplements. What works for one person could make another significantly worse. We really need precision personalized plans for complex, chronic illness.

Started a Renegade Research list. bsky.app/profile/did:...

Hi everyone! I'm back. :) Will try to be more active in here.

And Tess Falor and Isabel Ramirez-Burnett presented a mind-blowing expected 1 billion (!) #LongCovid sufferers by 2033 in their #UniteToFight2024 talk: youtu.be/vypEPfWlHCU?... @tessfalor.bsky.social @isabelrb.bsky.social

We're in @ScienceNews! www.sciencenews.org/article/pati... "Patient-led research “moves orders of magnitude faster than traditional modes of research,” @PutrinoLab says, because it focuses on the questions that are of greatest concern to patients, leading more quickly to impactful results."

Exciting news! We got my single-cell immune profiling data back from ImYoo Health. There's a clear signature of gene expression changes in CD14 monocytes during the AmoxiClav & for months afterwards! Here's one example, but there are many more genes affected.

@remissionbiome.bsky.social @tessfalor.bsky.social have been talking about these issues. Here’s a recent talk by Peter Rowe on the subject. I’m wishing you good treatment and support youtu.be/WaM2mPzR64w?...

Close to a year ago, @tessfalor.bsky.social messaged me and randomly said she was making me a “my intent” bracelet. She asked me if there was a word that defined me. My answer was #COMMUNITY ! A week later the bracelet showed up at my door and I have not taken it off since 🧵 1/3

Targeting exponential decay of suffering around the world. The conditions brought us together, but we have built a community that is focused on what we can accomplish together. We laugh, cry, celebrate, comfort and hold onto each other as a beautiful biome!

The @remissionbiome.bsky.social #Renegade50 are spread around the US, Canada, Mexico, EU, and UK. For Biome2 we have people lined up in Australia, Finland, Iceland, & Bali + others in the running in India, Lithuania, Trinidad & Tobago, South Africa, Indonesia, Japan, Brazil, & many more.

During my 2009 @remissionbiome.bsky.social event, I was shocked to realize how sick I had really been. I had gotten so used to it that I didn't even know how bad it was until it went away. I started to think that EVERYONE was probably actually sick, but was just used to it.

Telling @drt.bsky.social that I also had a @remissionbiome.bsky.social event. :)

@remissionbiome.bsky.social @drt.bsky.social @tessfalor.bsky.social This neuroinflammation study with PET scans is still recruiting. Might be worth seeing if we could get some before and after images for local participants?

The 1st of the @remissionbiome.bsky.social #Renegade50 will be starting AmoxiClav this weekend!! I just ordered this gong to be delivered to him from Amazon Germany to kick off the party. I❤️our rogue band of pirates 🏴‍☠️.

We're almost up to the anniversary of @remissionbiome.bsky.social starting to take off! The hashtag #RemissionBiome didn't even exist this time last year.

If you are an individual WITHOUT #MECFS #LongCovid or any other #postinfectious condition, generally relatively healthy and have a Biomesight result in the last 6 months that you’d be willing to share with @remissionbiome.bsky.social please contact me.

Yay! I can't wait to try Visible Health Plus.

Oh, we realize. 😁

Y'all need to follow Elly Bailey on Tiktok. She's making some awesome videos about her @remissionbiome.bsky.social #Renegade50 experience! www.tiktok.com/@toerabbit/v...