Patient-led 501(c)(3) nonprofit working on #MECFS & #LongCovidđ Runs project @remissionbiome ⢠https://xitter.cf/t.co/W0iQqqSYY2
Joined December 2022
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You can watch/listen to our Aug. 21 Research Roundtable "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS & Long Covid Research" on our YouTube channel here: youtube.com/watch?v=_ku1beUOâŚ
Thanks to our wonderful panelists and attendees for insightful and detailed questions, experiences and information!
#LongCovid #MECFS #pwME #VagusNerve
We're excited to share one of our project's results during 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
@tessfalor and @Rivkatweets will be joined by Dr. Peter Staats of @ElectroCoreVNS, Dr. Liisa Selin of @SelinLab, and project participants Malcolm Brooks and Giovanni Clarke. @PlzSolveCFS VP of Scientific Programs Dr. Jessica Maya will also be joining us!
Register at the link in the next post
1/3
Renegade Research retweeted
Comparison between a run causing mild PEM and a run not causing mild PEM (not yet anyway). Figures are run comparison data, post run vascular tone gradual return to baseline, and sleep analysis pre run. This is just a first look at the data. @RenegadeRes
Renegade Research retweeted
I cried at my desk today.
I was reviewing applications for one of our @RenegadeRes projects, SIGNAL, which will lend therapeutic devices to people with ME/CFS and Long COVID.
I was working in a spreadsheet and it hit me that each row is a real person with the columns giving me hints of how much their lives have been affected. Many are in their 80s. Some are just starting their adult lives and are bedbound. One got sick when they were 6 years old ⌠in 1955! So many are âvery severeâ, dependent on care. Triggered by infections, car accidents, environmental toxins, and more. All over the US.
I imagined my own story there: 42 years old ⢠ME/CFS ⢠multiple triggers ⢠symptoms since 2006
I scrolled down⌠100 rows⌠200 rows⌠so many people⌠and there are tens of millions more out there.
Ugh. This work is heavy.
But then I felt a hint of hope. In a month I might be hearing from people in this spreadsheet telling me that the device is helping them. đ¤ I know that the devices wonât work for everyone and wonât be a cure, but even if it just works for a few in this group, even just one, even just a little, it matters. đ¤
Well deserved! We are so excited about working with @ChronicleBioAI Everyone has been helpful, curious, collaborative and working hard to move this field forward. @tessfalor and I (Isabel) have been so impressed by the responsiveness and care through #innovationinn & beyond.
Thanks @Forbes for featuring the great work weâre doing @ChronicleBioAI.
There are exactly 0 FDA-approved therapies for the hundreds of millions of people suffering from diseases like POTS, Long COVID, MECFS or hEDS. We created ChronicleBio to change this.
By building the deepest dataset on these conditions and leveraging AI, we will understand what the biology behind the symptoms is. From there, we can map the right drugs to the right patients.
Renegade Research retweeted
PEM Post 3) in Load modality of Vagis ring app an obvious elevated heart rate post run/exertion. Sep27 is pre, 53% mod/high motion, 7% above HR ceiling. Sep30 is post, 49% mod/high motion, 85% above HR ceiling, 85% !!!!! Thatâs PEM. HR just wonât come down. @RenegadeRes
Renegade Research retweeted
PEM Post 1) went for a run Sep30 and gave myself PEM that I can see in Vagis ring data. Here is the run from Exertion mode (slide 1/2). Avg HR the same, Vagis Avg METS and Vagis peak METS similar to Apple Watch. Vagis uses different algorithms. More posts comingâŚ
Renegade Research retweeted
Over 100 votes now. Please give the mechanical basis hypothesis preprint a vote if you have a spoon to set up an account.
Please vote for our preprint, which was shortlisted in this research competition for the "Popular preprint of the decade" award! đĽł
Vote here: preprints.org/activity/awardâŚ
We are so proud of our researchers and their preprint "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long Covid"
Renegade Research retweeted
Join our Nov. 10 webinar on the @RenegadeRes SIGNAL study. Weâll discuss how people w/ #MECFS & #LongCovid can join and borrow therapeutic devices for home use at no cost & contribute data to the @BrainInflCollab unhideÂŽ platform for research.
Register:
ow.ly/bnIN50ZIvxa
ALT 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.
Renegade Research retweeted
Built a new mode for Vagis ring called âLoadâ specially designed for the MECFS and Long Covid communities. Metrics are all derived from heart rate and motion data. @RenegadeRes @LongCOVIDWebCA
Renegade Research retweeted
Reminder, vote daily. You can stop by every day for 1 min until Nov 30, or linger & read the abstracts for many papers, categories.
In Medicine & Pharmacology, the Mechanical Basis paper by @RenegadeRes is in 3rd place.
Can vote for more ME/CFS/LC entries, too.
Please vote for our preprint, which was shortlisted in this research competition for the "Popular preprint of the decade" award! đĽł
Vote here: preprints.org/activity/awardâŚ
We are so proud of our researchers and their preprint "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long Covid"
Haha. I (Isabel) was more reassured after seeing the team at the lab pack it like it was a fortresses. We used a lot more ice than necessary in case of delays.
The Fedex lady who told me on Tuesday that they were in temp control sounded very confident.
I was more than on the edge of my seat.
I felt like I was going to throw up for over 48 hours while obsessively checking the FedEx tracking to see if the samples were still stuck in customs. đ
I had visions of @ChronicleBioAI opening the cooler and finding the priceless samples thawed.
I watched the hours continue to tick forward, calculating how little dry ice was probably left in the cooler. 24 hours, 48 hours ... 60 hours ... And then a break, the package had cleared customs! Was there any way they could still make it?
I couldn't fall asleep last night thinking that there was no way that there was still dry ice left and that even if there was there was no way it would last while being out on the delivery truck today.
My husband told me that I needed to stop worrying, because there was nothing that I could do. But I was like, "There must be something ! I can call FedEx! I can tell them to add dry ice! I should really get up and text @rohit0logy that they are in the bay area and that maybe someone could drive to the FedEx hub to pick them up!" He talked me out of it and I finally fell asleep.
I woke up this morning and continued to refresh the FedEx tracking site with my phone nearby to text Rohit if I saw that it had been delivered.
Around noon Isabel and I were heads down in another project and 70+ hours had passed since the package was picked up at Alain's lab in Montreal, so I finally gave up. I was sure there was no way they had survived. There really was nothing I could do.
An hour later we got an email from Chronicle that they had arrived and there was still dry ice in the cooler! A miracle! Party time.
Renegade Research retweeted
Feels like a necessity to do own research and self-experiments, share findings, find patterns, using all that has come before by anybody. Been diagnosed 34 years, sick longer. Can't wait 34 more. My learning + finding stuff that helps has accelerated with @RenegadeRes community.
I've spent years being open about being a patient in the same disease space I research. Being a patient-scientist with hEDS got a lot of attention, sometimes framed as if I was the only one doing it.
As my work has expanded into ME/CFS, one of the things I've loved most is that patient-led research isn't unusual there. It's everywhere. Patients designing studies, running advocacy organizations, pushing back on flawed trials, building research programs from scratch.
But it has me wondering...are patients stepping up because we want to, or because we have to?
ME/CFS has been neglected for decades, underfunded relative to its burden, dismissed clinically, and continues to be incredibly misunderstood. If patients hadn't stepped up, it's not clear who would have. Much of this work is being done by people with limited energy, often unpaid and from their beds.
I believe deeply in the sentiment of ânothing about us without us." Patients bring expertise that no one else has and it's a scientific asset to any research approach.
But patient-led research can be both a strength and a sign of systemic failure. Patient leadership should be how research is designed from the start, not the backup plan when no one else shows up to move the field forward.
I'm curious, does your involvement in research feel like choice, necessity, or both?
US BP Med recall: eatingwell.com/blood-pressurâŚ
Renegade Research retweeted
I was more than on the edge of my seat.
I felt like I was going to throw up for over 48 hours while obsessively checking the FedEx tracking to see if the samples were still stuck in customs. đ
I had visions of @ChronicleBioAI opening the cooler and finding the priceless samples thawed.
I watched the hours continue to tick forward, calculating how little dry ice was probably left in the cooler. 24 hours, 48 hours ... 60 hours ... And then a break, the package had cleared customs! Was there any way they could still make it?
I couldn't fall asleep last night thinking that there was no way that there was still dry ice left and that even if there was there was no way it would last while being out on the delivery truck today.
My husband told me that I needed to stop worrying, because there was nothing that I could do. But I was like, "There must be something ! I can call FedEx! I can tell them to add dry ice! I should really get up and text @rohit0logy that they are in the bay area and that maybe someone could drive to the FedEx hub to pick them up!" He talked me out of it and I finally fell asleep.
I woke up this morning and continued to refresh the FedEx tracking site with my phone nearby to text Rohit if I saw that it had been delivered.
Around noon Isabel and I were heads down in another project and 70+ hours had passed since the package was picked up at Alain's lab in Montreal, so I finally gave up. I was sure there was no way they had survived. There really was nothing I could do.
An hour later we got an email from Chronicle that they had arrived and there was still dry ice in the cooler! A miracle! Party time.
We have shipped #innovationinn samples from Canada to @ChronicleBioAI
There was a delayed in customs that had us at the edge of our seat, but they made it safely.
Thanks @rohit0logy and team for staying on top of it with us
We have shipped #innovationinn samples from Canada to @ChronicleBioAI
There was a delayed in customs that had us at the edge of our seat, but they made it safely.
Thanks @rohit0logy and team for staying on top of it with us
I have always suspected that behavioral regulation is biochemically driven (by many factors).
Situational stressors are inputs (Isabel)
jneurosci.org/content/early/âŚ
1/ @tessfalor and I (Isabel) are headed to Boston for a couple of days, then Montreal.
We just had a couple of days in NYC for C3 Davos healthcare with @doc4care
As a nonprofit looking to maximize our resources, we often save by staying with others as much as possible
5/ We will also meet with other clinician/researchers with whom we have early discussions.
In montreal, we will ship the rest of the #innovationinn samples to be analyzed, which Alainâs lab has been bio banking