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

Data we definitely need more funding for: 1) ImYoo single cell immune profiling 2) the rest of the Amatica samples Team, what am I forgetting?

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

4) @ChronicleBioAI after we're able to go back in a few weeks and mail the samples 5) other blood tests after we ship samples in a few weeks (have to confirm funding situation with companies)

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

Data we will be getting for sure, some soon: 1) WAVi EEG from MIT @ImmunoFever 2) Some @amaticahealth samples analyzed (still need more funding to run the rest) 3) ME Screen mitochondrial testing for 2

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

6) Symptom tracking/subjective notes 7) All Vagis data, including stand tests 8) All other wearable data, like Oura 9) Device data, like lactate, HR, bp 10) a lot more that's not coming to mind. I'm having trouble opening my tracking spreadsheet.

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

Data we have on hand, but haven't gotten to dive into yet: 1) Moxy muscle oxygen 2) Urinalysis 3) Everyone's Brainchecks 4) Capillaroscopy 5) Lumia, including stand tests, for some

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

6) One of Isabel's cognitive tests during the WAVi EEG testing was way slower during PEM

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

3) We all had flat cortisol throughout the day (not higher in morning). This wasn't unique to PEM, though. 4) Interesting N=1 results popped up in Vagis ring data 5) My Braincheck cognitive score was WAY lower than normal during PEM

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

2) My sleep got classified as rest the night of my worst PEM in Garmin, compared to pretty much every other night the past few years being classified as stress. This is the opposite of what I expected, so I'm super interested to learn more.

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

A few possible signals that have popped up already that we're looking further into 1) Right Eye eye tracking circular pursuits (we all had worse scores during PEM vs the day before)

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

Fri: 2 hour research roundtable where I had to pay attention the whole time. Sat: I slept 11 hours last night and am going to try to rest as much as possible this weekend. Science update in thread ...

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

Sat: still had to do a full day of sample processing and testing Sun: rest, but did some driving Mon: full day of shipping and packing and then drove 2 hours Tues: drove 7.5 hours Wed: some rest but also catching up on a lot that had happened while I was gone Thrs: same ...

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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

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.

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

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.

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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

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!

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

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.

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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

Yay! Thanks for sharing and donating!

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

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!

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

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.

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

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.

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

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!

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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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Tess Falor, Ph.D. @tessfalor.bsky.social · 11/03/2025

Nice. This is great! Thanks for putting together

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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 · 15/02/2025

I do have the Aspen Vista and like it. I just go by feel for adjusting fit, though. Maybe @isabelrb.bsky.social has some tips?

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