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.

 

[Mij]

Announcement!!
1. Clinics are shutting down, but patients w/ MECFS & Long Covid need to regain function. Resources are decreasing, while the need grows!

We are thrilled to announce the launch of a full-service coaching and consulting program tailored for patients with ME/LC

 

[Mij]

2. This medical coaching & consulting program will address a needs gap for patients with Complex, Multi-system, Chronic Conditions (CMCCs) like ME/CFS, Long Covid, Chronic Tick Borne conditions, and associated comorbidities.

3. Our Model:Restoring and Optimizing function while helping you uncover YOUR underlying molecular and/or mechanical +dysfunction!!!!!!Guided by our expert team, John Haughton, MD, MS; Isabel Burnett, NBC-HWC & our Science Communicator Kat Boniface.

4. We are launching in 3 phaseshase 1 (Now): A full medical coaching service program for patients. This includes one on one sessions with the team, review of history and tests, meeting with your provider(s).

5. Also, comprehensive reports and ongoing guidance related to your individual situation, based on the biochemical pathways and identified functional needs.We are accepting 10 clients!

6. We will add 1-2 spaces weekly as capacity allows. Fill out this interest form https://forms.gle/EXGMnCAEn4AiSCsq8 to join the waitlist and join us on this webinar https://tinyurl.com/3ezbcwbc, Friday Jul 25, 2025 to hear more details on how the program will function

7. Phase 2 (October): Group sessions with a streamlined analysis and guidance. This format will stratify clients who fit similar profiles based on presentation and test results, and will meet as a group to make this option more affordable than the one on one full service.

8. Phase 3 (January 2026): A scaled model with personalized and automated processes with an affordable membership option. We are currently building the infrastructure to make this a reality.

9. If you are interested in any of the options, please fill out this interest form https://forms.gle/EXGMnCAEn4AiSCsq8. To get on the waiting list for either of the options. You will be invited to apply based on position on this list and capacity.

10. Coaching services are not intended for diagnosis and treatment and do not constitute a doctor-patient relationship. All information is for educational purposes only, and any changes you make should be done in consultation with your own Health Care Provider.

11. Clients are required to have their own qualified, licensed clinician to make diagnosis and/or change treatments.For additional questions, email us at Coaching@renegade-research.org

 

[Trish]

It looks utterly ridiculous. They are only taking on one or 2 patients a week, and the patients need to have their own doctor.

10. Coaching services are not intended for diagnosis and treatment and do not constitute a doctor-patient relationship. All information is for educational purposes only, and any changes you make should be done in consultation with your own Health Care Provider.

I suspect they will talk people into spending money on unevidenced biomed. tests and recommend unevidenced treatments for people to try.

 

[Utsikt]

3. Our Model:Restoring and Optimizing function while helping you uncover YOUR underlying molecular and/or mechanical +dysfunction!!!!!!Guided by our expert team, John Haughton, MD, MS; Isabel Burnett, NBC-HWC & our Science Communicator Kat Boniface.

10. Coaching services are not intended for diagnosis and treatment and do not constitute a doctor-patient relationship. All information is for educational purposes only, and any changes you make should be done in consultation with your own Health Care Provider.

11. Clients are required to have their own qualified, licensed clinician to make diagnosis and/or change treatments.