iiinova — where your digital self keeps evolving

Reposted by Renegade Research

Solve M.E. @solveme.bsky.social · 03/09/2026

Sign up for our Nov. 10 webinar on the Renegade Research SIGNAL study. We’ll discuss how people with #MECFS and #LongCovid can join and borrow therapeutic devices for home use at no cost & contribute data to the BIC unhide® platform for research. Register: ow.ly/LGx250ZIvx7

Portraits of four Renegade Research reps who are panelists for the Nov. 10 Solve M.E. webinar on the SIGNAL study. The study lends therapeutic devices to people with ME/CFS and Long COVID at no cost for home use and collects their data for research.

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Renegade Research @renegaderesearch.bsky.social · 04/09/2026

Watch our Aug. 21 Research Roundtable "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS & Long Covid Research" here: www.youtube.com/watch?v=_ku1... Thanks to our wonderful panelists and attendees for insightful questions, experiences and info! #LongCovid #MECFS #pwME #VagusNerve

youtube.com

Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid Research Roundtable

YouTube video by Renegade Research

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Renegade Research @renegaderesearch.bsky.social · 04/09/2026

Please vote at the link below ⬇️ in this research preprint competition! We are so proud of our researchers and their preprint "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of #MECFS and #LongCovid" You can read the preprint here: www.preprints.org/manuscript/2...

preprints.org

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Thomas F. Varley @thosvarley.bsky.social · 01/09/2026

A pre-print that I worked on w/ other members of @renegaderesearch.bsky.social formalizing the mechanical basis hypothesis of ME/CFS has been shortlisted for a "Popular preprint of the decade" award. If you feel so moved, a vote for us would mean a lot. www.preprints.org/activity/awa...

preprints.org

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ME/CFS San Diego @mecfssd.bsky.social · 04/09/2026

Vagus Nerve Stimulation: @renegaderesearch.bsky.social reports on its informal ME/CFS/LC VNS project, including patient experiences and immune findings, as its @solveme.bsky.social -funded SIGNAL project gets underway. youtu.be/_ku1beUOdZc

youtu.be

Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid Research Roundtable

YouTube video by Renegade Research

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Renegade Research @renegaderesearch.bsky.social · 21/08/2026

Last chance to register for our webinar, which begins in one hour! Hear from top clinicians, researchers and patients involved in Vagus Nerve Stimulation for #MECFS and #LongCovid:

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Solve M.E. @solveme.bsky.social · 21/08/2026

Starting soon! Today @ 11 am PT / 2 pm ET, Solve VP of Scientific Programs Dr. Jessica Maya joins Renegade Research for the webinar "Vagus Nerve Stimulation (VNS) Informal Tracking Project for #MECFS & Long Covid.” Register here: ow.ly/4YSg50ZyhnC

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Renegade Research @renegaderesearch.bsky.social · 20/08/2026

Don't forget to register for our Research Roundtable tomorrow! Registration link in the post below ⬇️

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Tom Kindlon @tomkindlon.bsky.social · 15/08/2026

(US only I believe) Borrow a Device & Report How It Works for You - @renegaderesearch.bsky.social & @solveme.bsky.social www.renegade-research.org/signal From @massmecfs.bsky.social Newsletter #LongCovid #MEcfs @mayalongcovid.bsky.social @tessfalor.bsky.social @sunsopeningband.bsky.social

Borrow a Device and Report How It Works for You

Solve M.E. has announced a Catalyst Award to Renegade Research to set up a lending program for therapeutic devices that may help manage the symptoms of ME/CFS or Long COVID. The first devices in the study are the Truvaga vagus nerve stimulation device and the Vielight red light therapy device. Participants will contribute data on the impact of the devices. Learn more and register here.

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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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Renegade Research @renegaderesearch.bsky.social · 14/08/2026

We're excited to share one of our project's results in this upcoming Research Roundtable: "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid" Friday August 21, 2026 at 11 am PT US, 2 pm ET US and 7 pm UK Register: us06web.zoom.us/webinar/regi... 1/3 #LongCovid #MECFS

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Renegade Research @renegaderesearch.bsky.social · 14/08/2026

Last call for researchers who want to hear from patients! DM @tessfalor.bsky.social if you want to attend this webinar and be able to ask the patients questions (if you have any).

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Elly Brosius, MS @ellybrosius.bsky.social · 11/08/2026

#capillariscopy from @renegaderesearch.bsky.social #InnovationInn nail capillariscope from my PEM day (Sat). Less perfused then before day was my impression. Similar odd shapes. Weird horizontal vessels. @immunofever.bsky.social Good thing had 2 vein repair procedures or could have been worse.

Fingernail bed close up with tortuous capillaries

Instruction card of important features of Healthy Capillaries with examples of problems as observed in the MAESTRO study. Examples include leaking, swelling/inflammation, irregular shape, and low perfusion.

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Renegade Research @renegaderesearch.bsky.social · 13/08/2026

Join us tomorrow! #LongCovid & #pwME patients will share triggers, treatments, remission events, symptom profiles, etc. Over 30 researchers will join including @drmaureenhanson.bsky.social, @sunsopeningband.bsky.social, @resiapretorius.bsky.social, @dbkell.bsky.social, @michaelpelusomd.bsky.social

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Elly Brosius, MS @ellybrosius.bsky.social · 13/08/2026

When to patients get to really share deep stuff that could speak new research or improve current research with researchers like this? ⁉️❔❓❗️❕‼️❣️ 💛 #MECFS I hope you can join us or catch the recording in @renegaderesearch.bsky.social YouTube Live channel.

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Renegade Research @renegaderesearch.bsky.social · 10/08/2026

Join us for a Research Roundtable this week, "Patients to Researchers: Lived Experience" Friday, August 14 at 1 pm ET US #MECFS and #LongCovid patients will discuss their experiences to help researchers improve research projects and trials Register: us06web.zoom.us/webinar/regi... 1/2 🧵

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Elly Brosius, MS @ellybrosius.bsky.social · 04/08/2026

We are being cautious with foods that are known sensitivities at @renegaderesearch.bsky.social #InnovationInn as best we can. Gluten free for all. Dairy free for some. High salt, potassium as needed. Organic when available. Garden stuff, too. Also ordering clean prepared meals to save energy/time.

Pretty dinner plate with yellow and blue teapot design with eggs, quinoa bread with ghee and sautéed zucchini.

Prepared meal packaged with labels in French. Dish of produce behind.

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Renegade Research @renegaderesearch.bsky.social · 10/08/2026

Our #InnovationInn team has been hard at work testing ME/CFS and Long Covid patients before, during and after PEM to try to better identify and quantify specific issues! 🧪 Check in with @tessfalor.bsky.social, @ellybrosius.bsky.social, @isabelrb.bsky.social and others team researchers we repost!

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Elly Brosius, MS @ellybrosius.bsky.social · 10/08/2026

Here are my RightEye test Pursuits before exertion score of 81, next day in hyper-time post-exertion before PEM score of 73 (PESE), in PEM score is 28! Left eye sliding down, less circular, less consistent, more wiggly with each time around the circle. #InnovationInn @renegaderesearch.bsky.social

RightEye test. Traces of Circles followed by each eye. Even vertically and wiggle size. On target. A little wobbly around each circle.

RightEye test. Traces of Circles followed by each eye. Left eye dropping bellow the target circle a little, wiggle size more, especially on left. A little wobbly around each circle. Day after induce PEM.

RightEye test.Traces of Circles followed by each eye. Left eye dropping well below the target circle, wiggle size larger both eyes, especially on left. Very wobbly around each circle, more on left. 2 Day after induce PEM. Left eye now a diagonal oval.

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Reposted by Renegade Research

Elly Brosius, MS @ellybrosius.bsky.social · 08/08/2026

Quick pose bcI don’t want to stand still when don’t have to! #OrthostaticIntolerance Superman stance 4 @renegaderesearch.bsky.social #InnovationInn with muscle @MoxyMonitor. Hoping 4 good PEM data SOS bc #millionsmissing need more help, mild- #severeME @meactnet.bsky.social #severeMEday #MECFS

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

3 days until our patient-researchers gathers at #InnovationInn to measure before, during & after PEM as much as we can! 🧪 We're reaching limits to add new test kits or devices in time, so this is likely close to our final list Tell us about other online or app tests we can check out! 🧵 1/3

A colorful spreadsheet list of full research devices and tests and how Renegade Research plans to use them during their August 2026 Innovation Inn.

Tests include: RNA seq (Amatica) + biobanking for later proteomics & Alden analysis blood test, Cytokines (ELISA) blood test, Acetylcholine (ELISA) blood test, Mitochondrial testing (ME Screen) for 1 person blood test, Ketones (Keto Mojo) saliva test, Cortisol (Eli) urine test, Ketones (strips) urine test, general urinalysis (Urinox) urine test, Minerals and Vitamin C (Vivoo) wearable test, EEG (WAVi and Muse) wearable test,
Oura and Garmin and Apple watch etc. wearable tests, Continuos 02 (Wellue ring) wearable test, Blood flow to brain (Lumia) with stand tests wearable tests, Glucose (Stelo CGM) wearable test, Autonomic function (Vagis ring, Reflex band, Polar H10) with stand tests wearable test, Muscle oxygen (Moxy rental) device test, Forehead Thermometer device test, Flir IR camera device test, CPAP to capture any UARS and apneas device test, EKG (Kardia) device test, Hand grip (dynamometer) device test, Blood pressure cuff device test, Metabolilsm (Lumen) device test, Ketones (breath) device test, SpO2 Oximeter device test, Capilleroscopy device test, Lactate (finger prick) device test, Capnography (ETCO2) device test, Eye tracking (Right Eye) device test, Gait analysis app test, Balance testing (2/Single leg, eyes open/shut) online and app test, Pupilometry (Reflex) online and app test, PEM questionnaires online and app test, Symptom tracking (Bearable) online and app test, Remote cognitive testing (Braincheck) online and app test, Cognitive (Lumosity games) online and app test

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

Miss out on our Research Roundtable with Drs. Avram Gold and Joe Borelli today? Watch the recording here, and subscribe to our YouTube channel to get updates on future recorded events: www.youtube.com/live/VcYQL8z...

youtube.com

Renegade Research Part 2: Sleep Disorders, Breathing Mechanics & Fatigue w/ Drs. Gold & Borelli MD

YouTube video by Renegade Research

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Renegade Research @renegaderesearch.bsky.social · 27/07/2026

Our recording of this event is now available on our YouTube channel! Watch and subscribe for updates here: www.youtube.com/live/NvnlySq...

youtube.com

Renegade Research Community Meeting: Clinicians and Patients Discuss Post-Exertional Worsening (PEM)

YouTube video by Renegade Research

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Renegade Research @renegaderesearch.bsky.social · 25/07/2026

It's not too late to register for our Community Meeting webinar tomorrow! It will be an insightful followup on these complex topics we discussed in a recent webinar with @openmedf.bsky.social Subscribe to our YouTube channel to get notified when the recording drops: www.youtube.com/@renegaderes...

youtube.com

Renegade Research

Decentralized patient-led research and clinical education. Focused on ME/CFS, Long Covid, and co-morbidities.

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Renegade Research @renegaderesearch.bsky.social · 24/07/2026

We've had a lot going on! If you missed out: 7/15 - Our webinar on PEM vs crashes in #MECFS #LongCovid with @openmedf.bsky.social (recording on our YouTube) 7/20 - We won a @solveme.bsky.social Catalyst award! www.renegade-research.org/signal-launch & launched a new project, LUMINA 🧵 1/7

renegade-research.org

SIGNAL Launch | Renegade Research

Big news: Solve M.E. has awarded Renegade Research a Catalyst Award to launch SIGNAL - a decentralized platform to test promising therapeutic devices for ME/CFS and Long COVID.

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Renegade Research @renegaderesearch.bsky.social · 23/07/2026

Join us today at 12 PM ET US for a Research Roundtable on @amaticahealth.bsky.social's RNA Sequencing Research with Nick Boyd-Gibbins! Amatica has one of the largest patient-driven RNA datasets of #MECFS #pwME & #LongCovid patients Registration link below ⬇️ Recording to drop on our YouTube channel

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Renegade Research @renegaderesearch.bsky.social · 22/07/2026

Please join us Sat. July 25 at 12 pm ET US for a Community Meeting: "Clinicians with Patients: Clinical Management Focus on Crashes and PEM, PESE & PENE" with Drs @doc4care.bsky.social & Brayden Yellman discussing care issues for #MECFS & #LongCovid Register: us06web.zoom.us/webinar/regi...

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#MEAction NC @meactionnc.bsky.social · 20/07/2026

Fantastic new platform to help ME/CFS & Long COVID pts try t herapeuticdevices, return the devices so others may use them, and then share their data and stories about what they liked and didn't like. Try before you buy is awesome and not usually available. May this new platform grow.

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Reposted by Renegade Research

Solve M.E. @solveme.bsky.social · 20/07/2026

📢Big news! Solve has selected @renegaderesearch.bsky.social for our ME/CFS Catalyst Award. We’ll fund their study “SIGNAL: A Decentralized Discovery Platform for Emerging Therapeutic Devices in ME/CFS and Long Covid.” 🧵

Banner for the Renegade Research Study on SIGNAL, a platform for discovering therapeutic devices in ME/CFS and Long Covid, with photos of six researchers from the SIGNAL team.

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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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Renegade Research @renegaderesearch.bsky.social · 19/07/2026

Please join us on Friday, July 31, 2026 at 12 pm ET US for a Clinician’s Roundtable webinar: “Part 2: Sleep Disorders and Breathing Mechanics” with Avram Gold, MD and Joe Borelli, MD on sleep and breathing issues in #MCFS and #LongCovid patients Register: us06web.zoom.us/webinar/regi... 🧵 1/7

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Renegade Research @renegaderesearch.bsky.social · 18/07/2026

We received another $10K from a private donor for our Innovation Inn! Due to popular request, we will use these funds with @amaticahealth.bsky.social! 🎉 They're giving us a deal on testing and will also biobank for us, and Amatica will also biobank 20 additional samples for later proteomics 1/3

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Renegade Research @renegaderesearch.bsky.social · 16/07/2026

Our project "Innovation Inn - Quantifying PEM" is happening soon!! 5 people of our team are gathering in one place. We'll test before & after inducing PEM. More donations lead to more testing we can do to help the cause. See our donation page for our wish list: www.zeffy.com/en-US/donati...

zeffy.com

Innovation Inn - Quantifying PEM

Five patient-researchers from our team will be coming together to induce Post Exertional Malaise (PEM) and track and measure as much as we can before, during,…

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Emily Johnson @emilyrj.bsky.social · 15/07/2026

Happening now! You won’t want to miss this webinar

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Renegade Research @renegaderesearch.bsky.social · 15/07/2026

Please join us today at 5 pm ET for a webinar we're hosting with @openmedf.bsky.social! Discuss PEM, PESE and PENE with @isabelrb.bsky.social, @tessfalor.bsky.social, @sunsopeningband.bsky.social, Danielle Meadows, Chris Armstrong Register: us02web.zoom.us/webinar/regi... #LongCovid #MECFS #pwME

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Renegade Research @renegaderesearch.bsky.social · 13/07/2026

We'll host a Research Roundtable on August 14 to help researchers learn from patients with complex, multi-system, chronic conditions! Applications are due July 24. Speakers will be notified by July 31. Caregivers welcome to apply. Apply: docs.google.com/forms/d/e/1F... #MECFS #LongCOVID #hEDS

docs.google.com

"Patients to Researchers: Lived Experience Research Roundtable" Application

Renegade Research will be hosting a live Zoom webinar on August 14. 6-8 patients with ME/CFS, Long COVID, or related conditions will present 5 minute medical histories (such as diagnoses, onset, prog...

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Elly Brosius, MS @ellybrosius.bsky.social · 23/04/2026

The project organizer, Adrienne Andres, is a textile artist from Manitoba, Canada whose narrative practice sits at the intersection of traditional craft and contemporary art. I feel blessed to have met Adrienne and her awesome Mom via @renegaderesearch.bsky.social.

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Renegade Research @renegaderesearch.bsky.social · 06/05/2026

We're are considering this meds, symptoms, other stuff tracking app in some upcoming research projects!

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Elly Brosius, MS @ellybrosius.bsky.social · 23/04/2026

The Forget-M.E.-Not collective quilt is a venue to highlight the art, lives, and stories of people living with M.E. so they may be more seen and heard. The project enables participants to represent their story of how their lives have been impacted. forgetmenotquilt.ca/participate

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The Zebra Alliance Community @thezebraalliance.bsky.social · 27/03/2026

So many TZA Community members live w gut disorders, often comorbid, so we really appreciate that there are docs specializing in the neuro and gut connection (treatment). DYK: GERD, IBS, Functional Dyspepsia, and Gastroparesis are common comorbidities for folks w #EDS and #HSD 🩵🦓🩵 #chronicillness

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Renegade Research @renegaderesearch.bsky.social · 27/03/2026

Join us today, Friday March 27 at 1 pm ET! Let's get ready to rumbllle! Or un-rumble, if that's what your stomach needs 😅 Registration link: us06web.zoom.us/webinar/regi... We'll talk all things brain and gut in #LongCovid and #MECFS with neurogastroenterologist Dr. Zac Spiritos!

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Renegade Research @renegaderesearch.bsky.social · 26/03/2026

If you haven't registered for our event with Dr. Zac Spiritos on Friday, do it now! ✨ us06web.zoom.us/webinar/regi... Mast cells, POTS & other dysautonomias, the vagus nerve, visceral hypersensitivity, celiac, IBS, mold, inflammation reduction & more

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