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As promised last week, welcome to the Renegade Research Fall 2024 Update — Part 02!
If you didn't have the chance to read our previous email, we created a 3 email series focused on the developments we had within Renegade Research and Remission Biome over the past few months.
In this newsletter, we'll talk about our initiatives around awareness and education, and next week, we'll be talking about Remission Biome, our biggest project to date and probably the reason why you know us.
A quick reminder that we will present all of these updates and answer questions from participants in our Fall 2024 Community Meeting on Friday, October 09. We hope to see you there!
Going back to this week's topic, we believe that awareness and education are key to raise the level of knowledge on ME/CFS, Long COVID and many other Infection-Associated Chronic Illnesses, while fighting the misinformation and stigma associated with them.
And it's not enough to discover new potential diagnostics and treatments, it's important that everyone can learn they exist so they can access them — patients, clinicians, researchers, caregivers, academia, health institutions, and society in general.
Because of this, we've been working on different formats to share these insights, supporting and speaking at other organizations' initiatives and being featured in media.
In the coming months, we're planning to create more educational content, develop resources and organize initiatives to connect our community, so that we can better support patients and equip professionals.
It's important not only to normalize MECFS, Long COVID and IACI as biological illnesses, but also as illnesses that just like any other, we can research, develop diagnostics and find treatments for.
To the long haulers, the ones who just started developing symptoms and all those in between: we see you and we're committed to share any knowledge that can help you have positive health breakthroughs.
Thank you for being here and trusting in us.
Have a great Wednesday!
The Renegade Research Team
P.S.: We'd love to hear from you! If we were to launch a periodical newsletter, what topics would you like to read about?
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As we kickstart new research projects and create more educational content and resources, please check our new subscription options to make sure you won't miss any new updates!
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Upcoming Events
Research Roundtable
UPDATE: we now have 3 speakers!
In this Research Roundtable Jeff Wood, Michael VanElzakker and Dr. Brayden P Yellman will discuss The Mechanical Basis Model, specifically the Brain Stem Deformation and its potential to understanding ME/CFS.
Jeff Wood is on the Neuro Research Team at Mt. Sinai. He solved his own case of post-viral ME/CFS and then built a new model of the pathophysiology of ME/CFS, which he calls “Mechanical Basis”.
Michael VanElzakker, PhD, is an Assistant Professor in the Division of Neurotherapeutics at Harvard University and a neuroimmunologist with expertise in persistent central nervous system consequences.
Brayden P Yellman, MD, is a board-certified physician in internal medicine and rheumatology at Bateman Horne Center.
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RR Community Meeting
Join us in this webinar as we walk you through all of the new breakthroughs, achievements, changes and lessons learned along the past few months.
We'll discuss next steps and where we're headed with Renegade Research.
Questions welcomed — send us your questions in advance by replying to this email or join us live!
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Research and Clinician's Roundtables
Research Roundtables started as an informal invite-only science meeting to discuss Remission Biome hypotheses with subject matter experts from diverse fields, including immunology, microbiome science, biological systems, etc.
We found that the meetings were so fun and valuable that we have now opened them to the public. We bring together researchers, clinicians, patients, and caregivers to discuss hypotheses and results. Everyone is welcome!
Our next Research Roundtable will discuss the mechanical/brainstem basis of ME/CFS. Join us October 4, 2024 at 1pm EDT. Register here and we'll see you there!
Clinician's Roundtables are also open to everyone, but are targeted towards clinicians. The goal of these roundtables is to increase the pool of knowledgeable clinicians who can help our patient population.
We’ve hosted experts (including Dr. Lawrence Afrin, Dr. Peter Rowe, Dr. David Kauffman, Dr. Ilene Ruhoy, Dr. Rebecca Ryan, Dr. Todd Davenport, and Dr. John Haughton) speaking about topics like MCAS, structural neurological conditions, GI issues, and more.
If you’re unable to attend live, you can watch the recorded Roundtables on our YouTube Channel.
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Renegade Research in the Press
This year, Remission Biome had the honor to be featured in the Cover Story of Science News. This is another important step to create more awareness not only within the public in general, but also for professionals who work in the research and medical fields.
You can read the Science News article online here.
To check our previous press references, click in this link to go to our Media & PR page.
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Talks & Speaking Engagements
In the past year we have been invited to present about our project and research insights to specific groups and at conferences. The community has so generously supported us, so we want to give back by sharing our hypotheses and results real-time as they become available.
Here are some of the presentations we have given:
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Unite To Fight 2024
Tess and Isabel had the pleasure to speak at Unite To Fight 2024, where they spoke about the history of patient led initiatives, IACI and Remission Biome.
Here's the recording of the Unite to Fight presentation.
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Ron Davis's Working Group (#MECFS24)
Ron Davis has an annual working group meeting, which is focused on the molecular basis of ME/CFS. You can read more about the meeting in this great blog post by Rivka Solomon.
The meeting is not recorded, so that researchers can share unpublished results. Our team shared the slides we presented at the meeting with the community on Twitter.
We will also record our talks and post them on our YouTube channel — subscribe to be notified when they are posted.
Kat Boniface, who our team affectionately calls, "The Glutamate Boss", gave a summary of how glutamate could be involved in ME/CFS. Kat's Twitter post.
Jeff Wood discussed his mechanical basis model of ME/CFS. He shared that the brainstem is a central regulator that controls many systems which are affected by ME/CFS, how this might lead to downstream effects in many systems, and how people with mechanical issues might be a large subset. Thomas Varley wrote a great summary of these ideas.
(Jeff, Thomas, and Michael VanElzakker, and Dr. Brayden Yellman will continue the conversation at the Research Roundtable Oct 4 at 1pm EDT. Register here!)
Thomas Varley wasn't able to present at the meeting, so he shared the slide he planned to present along with an explanation of it on Twitter. This analysis was done using daily symptom tracking data collected by the Remission Biome "Renegade50" cohort, which you will learn more about next week.
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