iiinova — where your digital self keeps evolving

Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 15/08/2026

Thank you to everyone who attended our August 14, 2026 webinar ""Patients to Researchers: Lived Experience"! Such great and informative discussions If you couldn't make it, here's the recording on our YouTube channel: www.youtube.com/watch?v=kxlU...

youtube.com

Patients To Researchers: Lived Experience Roundtable

YouTube video by Renegade Research

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Tess Falor, Ph.D. @tessfalor.bsky.social · 15/08/2026

#InnovationInn update. 9 days after over-exertion. My personal update: I'm still not 100%, but I also wasn't able to properly rest after the exertion, so it's hard to say if it's still from what I did 9 days ago. My timeline Thrs: exertion (dance) Fri: Exertion (jog) ...

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Tess Falor, Ph.D. @tessfalor.bsky.social · 02/08/2026

Headed to our @renegaderesearch.bsky.social Innovation Inn research project in Montreal. Packing was intense, but we were able to fit everything. Our team will be sharing real-time over the next week about what we're doing and any interesting findings. Follow along with the hashtag #InnovationInn

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Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 01/08/2026

More exciting news! @isabelrb.bsky.social & @tessfalor.bsky.social met with someone who recommended TokuKits teiko-labs.com/tokukit They need them by Monday to take to Montreal for #InnovationInn Tess reached out to @hereisramji.bsky.social & his team at Seiko Labs, they will ship them on time! 🎉

teiko-labs.com

TokuKit — Teiko

Preserve immune cells and functional markers for up to 24 months. A three-step, centrifuge-free process for any global trial site.

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Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 01/08/2026

We have exciting news! Two members of @immunofever.bsky.social's research group will join us at Innovation Inn next week to demo testing they use in their MAESTRO project: RightEye eye tracking, WAVi EEG, Nailfold capillaroscopy, @wearlumia.bsky.social blood flow to the brain Thanks to Mikki 🙏

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Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 20/07/2026

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 🧵

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Reposted by Tess Falor, Ph.D.

WeiterBisHolkig @schoenegene.bsky.social · 20/01/2026

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

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Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 08/03/2026

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

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Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 15/11/2025

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/

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Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 15/11/2025

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/

youtube.com

Renegade Research Volunteer Information Session

YouTube video by Renegade Research

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Tess Falor, Ph.D. @tessfalor.bsky.social · 12/11/2025

This is coming up this Saturday at noon ET. Join us to meet our awesome team and learn out how you can get involved!

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Tess Falor, Ph.D. @tessfalor.bsky.social · 12/11/2025

The Amatica team is doing amazing patient-led decentralized work. Can't wait to hear more on the 21st!

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Tess Falor, Ph.D. @tessfalor.bsky.social · 11/04/2025

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! 🙌

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Reposted by Tess Falor, Ph.D.

Elly Brosius, MS @ellybrosius.bsky.social · 05/04/2025

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

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Reposted by Tess Falor, Ph.D.

KimK @kimk-research.bsky.social · 05/04/2025

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!

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Reposted by Tess Falor, Ph.D.

KimK @kimk-research.bsky.social · 04/04/2025

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!

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Tess Falor, Ph.D. @tessfalor.bsky.social · 04/04/2025

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.

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Reposted by Tess Falor, Ph.D.

C.H. Romatowski @chromatowski.bsky.social · 03/04/2025

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!

zeffy.com

Support David Esteban's study on Microbial Metabolites in Long COVID

* Heads up: Zeffy has a default "tip" of 17% that goes to them, but it's not required. When you go to donate, you can select the dropdown under "Help keep Zeffy free for Renegade Research" and put in ...

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Tess Falor, Ph.D. @tessfalor.bsky.social · 04/04/2025

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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Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 29/03/2025

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...

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

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Reposted by Tess Falor, Ph.D.

Ror Preston @rorpreston.bsky.social · 27/01/2025

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...

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Tess Falor, Ph.D. @tessfalor.bsky.social · 08/03/2025

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 🔬🏡

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Tess Falor, Ph.D. @tessfalor.bsky.social · 24/01/2025

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...

frontiersin.org

Frontiers | Comorbidities and neurosurgical interventions in a cohort with connective tissue disorders

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Reposted by Tess Falor, Ph.D.

#MEAction NC @meactionnc.bsky.social · 20/01/2025

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!

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Tess Falor, Ph.D. @tessfalor.bsky.social · 17/01/2025

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

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Tess Falor, Ph.D. @tessfalor.bsky.social · 17/01/2025

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

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Reposted by Tess Falor, Ph.D.

Katharina 🦋🍋🍀 @katha1970.bsky.social · 01/01/2025

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

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Reposted by Tess Falor, Ph.D.

Elly Brosius, MS @ellybrosius.bsky.social · 16/01/2025

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...

naviauxlab.ucsd.edu

Chronic Fatigue Syndrome research – Naviaux Lab

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Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 03/12/2024

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

zeffy.com

Accelerate research and care for ME/CFS & Long COVID

Renegade Research (RR) is a non-profit, 501c3 decentralized organization pioneering patient and caregiver-led research with a focus on ME/CFS, Long COVID (LC) and other infection associated chronic il...

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Reposted by Tess Falor, Ph.D.

Renegade Research @renegaderesearch.bsky.social · 03/12/2024

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

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Thomas F. Varley @thosvarley.bsky.social · 15/11/2024

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-...

synergies.substack.com

Doing the science ourselves

Facing a void of institutional research and clinical interventions, long COVID and other chronic illness sufferers are doing something remarkable: they're doing the science themselves.

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Tess Falor, Ph.D. @tessfalor.bsky.social · 15/11/2024

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.

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Tess Falor, Ph.D. @tessfalor.bsky.social · 15/11/2024

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

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Tess Falor, Ph.D. @tessfalor.bsky.social · 15/11/2024

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

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Reposted by Tess Falor, Ph.D.

Katharina 🦋🍋🍀 @katha1970.bsky.social · 14/11/2024

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

youtu.be

T. Falor & I. Ramirez-Burnett: Catalyzing change with patient/caregiver led research (Day 1,Block 5)

YouTube video by UniteToFight

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Tess Falor, Ph.D. @tessfalor.bsky.social · 28/03/2024

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."

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Tess Falor, Ph.D. @tessfalor.bsky.social · 28/03/2024

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.

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Reposted by Tess Falor, Ph.D.

María Richardson @diatoma.bsky.social · 23/02/2024

@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?...

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Reposted by Tess Falor, Ph.D.

Isabel Ramirez-Burnett @isabelrb.bsky.social · 30/11/2023

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

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Isabel Ramirez-Burnett @isabelrb.bsky.social · 11/11/2023

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!

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Tess Falor, Ph.D. @tessfalor.bsky.social · 11/11/2023

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.

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Tess Falor, Ph.D. @tessfalor.bsky.social · 11/11/2023

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.

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Long Covid Lad @longcovidlad.bsky.social · 28/10/2023

@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?

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Tess Falor, Ph.D. @tessfalor.bsky.social · 28/10/2023

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 🏴‍☠️.

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Tess Falor, Ph.D. @tessfalor.bsky.social · 15/10/2023

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.

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