Renegade Research

[Dolphin]

I thought I would set up a thread for this 501(c)(3) non-profit.

https://www.renegade-research.org/

 

[Dolphin]

Renegade Research hosts a series of Research Roundtables and Clinician's Roundtables.

Upcoming events in February are:



Research Roundtable: Johns Hopkins ME/CFS Clinic Update Part 2
Peter Rowe, MD, & Alba Azola, MD will discuss the latest research on ME/CFS and Long COVID from their clinic.

Friday Feb 14, 2025 - 1:00 PM ET (10:00 AM PT). Register here.



Clinician’s Roundtable: John Haughton MD, MS - The Remission Biome Protocol. Clinicians and patients are invited to learn the protocol in detail.
Friday Feb 21, 2025 - 1:00 PM ET (10:00 AM PT). Register here.

 

[Jaybee00]

Renegade Research is the same as Remission Biome.


RemissionBiome
RemissionBiome is a project that uses antibiotics, probiotics, and other supplements to try to trigger remission events and lead to long term baseline increase in function.

 

[Utsikt]

https://www.remissionbiome.org/about/protocol-overview
This so-called self-experimenting is being labeled as patient-led research.

I can understand why someone would go down that rabbit hole, but it seems quite unsafe and unethical.

 

[Trish]

We have a thread about Remission Biome here:
https://www.s4me.info/threads/the-o...ent-led-research-group-remission-biome.34076/

 

[Mij]

Have you registered? Join us tomorrow at our Clinician's Roundtable where our Medical Director John Haughton, MD at
@doc4care
will share how clinicians can guide patients through the @RemissionBiome
protocol for ME/CFS and Long Covid. Invite your provider! Registration link below
LINK

 

[Mij]

April 11, '25: "Orthostatic Flow Syndromes"
Clinician's Roundtable zoom by Interventional Radiologist Steve Smith, MD. Relevant for POTS, fibromyalgia, ME/CFS, migraine, brain fog, IBS, vulvodynia, ADHD, and more.

Register:
LINK

 

[Utsikt]

Orthostatic Flow Syndromes

Description
Presenter Steven J. Smith, MD, will speak for a short time with a few slides and then there will a long Q&A/discussion session. Dr. Smith is now retired and publishing research, but in his long career as an interventional radiologist, he noticed that many of his Pelvic Congestion Syndrome patients had POTS and related syndromes, which often improved after treating the bad veins. Could poor blood flow be at the heart of some of these syndromes and symptoms? Dr. Smith makes the case. His studies show improvement in patients across 5 different centers, at 3-, 6-, and 12-month follow-ups, and across numerous symptoms. 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, and more.

His published studies include

«Imaging findings of pelvic venous insufficiency in patients with postural orthostatic tachycardia syndrome"

"An online survey of pelvic congestion support group members regarding comorbid symptoms and syndromes"

"Improvement in chronic pelvic pain, orthostatic intolerance, and interstitial cystitis symptoms after treatment of pelvic vein insufficiency"

Standing Up to POTS Podcast with transcript featuring Steve Smith from November 2024 https://www.standinguptopots.org/po...s-disorders-improves-pots-and-other-syndromes

 

[forestglip]

Post on Bluesky:

1/ March 28, 2025 - Research Roundtable: The Acid Test - a Patient-led Study of Lactate in ME/CFS and Long COVID

Todd Davenport, PhD, and Ciara Wright, PhD.

A patient-led study, called The Acid Test", formed on Twitter based on reports of abnormal lactate in ME/CFS and Long COVID.

2/ Hundreds of patients around the world collected lactate measurements using at-home finger prick devices and then submitted their results for analysis. Ciara Wright, one of the patients who initiated the study, will give the background and history of the project...

https://us06web.zoom.us/webinar/register/8317405199821/WN_K9oQDarhTPeaZAE9Aa3pGw

 

[ahimsa]

Maya Lindemann posted on Bluesky asking for input on the design of a study.

PwME (preCovid): I need your input on a study design.

Please fill out this quick survey gformsapp.com/f/1elUnYTbc-...

I’ve been working on this project for over a year and am so excited to share it with you

Spoiler: Image attached to Bluesky post

I don't plan to fill out this form myself but I wanted to post it here for folks who know more about how to design a good study.

Here's a link to the google docs form:
(the link in the first post didn't work for me, asked me to download an app)

Study Design Input-ME pts only

Renegade Research is planning a study on people with ME using Vielight Gamma (red light with intranasal applicator) We currently have preliminary funds from Kanro to develop a study, but no funds for participant compensation. As a patient led research project, we need YOUR input to determine...

docs.google.com

There was no deadline mentioned in her post so I don't know how quickly this input is needed.

 

[Utsikt]

This is the device they want to test:

Spoiler: Image

 

[Trish]

She refers to 'per protocol' for what patients would have to do with the device, but doesn't say what the device is. The survey is just a quick one about whether people would participate and how much money they would need to be paid to participate.
How can you know if you would participate without knowing how arduous the protocol is. It looks like a very uncomfortable device, and impossible to use while lying in bed.

 

[Mij]

That clip/plug in the nose would give me anxiety. Does it go inside the nose?

 

[Utsikt]

That clip/plug in the nose would give me anxiety. Does it go inside the nose?

They say it’s intranasal, so I would assume it goes in.