USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

Thank you for posting a better image of that graph, @LarsSG

@Hutan, the image posted by X/twitter user "ME/CFS News" had the bottom part cut off. But I posted it any way hoping it would still be useful. I'm glad someone found a better image!
 
FMMM1 said:
Anyone know when/if this will be available to view again --- do NIH upload these onto YouTube or similar?
EDIT - I emailed "InformationOffice4@mail.nih.gov" to ask - I'll update when I get a reply.
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Response from NIH -
"You asked whether the ME/CFS Research Roadmap webinar that took place on August 25th, 2023, would be available to view in the future. An email will be sent via the ME/CFS Trans-NIH Working Group listserv when the recording and transcript are available.

We hope this information is helpful.

Office of Neuroscience Communications and Engagement
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group"
 
From an NIH MECFS Information List email.

"Registration now open for ME/CFS researchers: Symposium For Promoting The Advancement Of Research Knowledge In ME/CFS

Registration is open for the upcoming Symposium For Promoting The Advancement Of Research Knowledge In ME/CFS (SPARK ME) on December 11, 2023 on the campus of the National Institutes of Health. This symposium is open for investigators doing research on ME/CFS who are currently undergraduates, graduate students, postdoctoral and clinical fellows, and early career investigators (individuals who are in the first years of a faculty position). Please go to: https://event.roseliassociates.com/me-cfs-symposium/ for more information about the symposium.

Travel support will be available for individuals whose submitted abstracts are selected for presentation at the symposium and/or either as oral or poster presentations at the NIH ME/CFS Research Conference on December 12-13, 2023. Travel support will provide funding for hotel (Hyatt Bethesda Hotel), travel (airfare, train, etc.) and per diem.

Please distribute this announcement to individuals who may be interested in attending. Questions should be directed to sofia.jones@roseliassociates.com

The NIH ME/CFS Research Conference on December 12-13 will be open to the public. Meeting and registration information about the conference coming soon!"
 
From: NIH MECFS Information
Sent: Friday, September 29, 2023 9:30 PM
Subject: News from NIH: ME/CFS Research Roadmap Webinar Series-- Immune system, October 19


The next ME/CFS Research Roadmap webinar will take place on October 19, 2023, starting at 11am ET. Focusing on how ME/CFS impacts the immune system, presenters will describe current research, knowledge gaps, and future research opportunities in this area. There will be Q&A sessions during which attendees can ask questions and contribute ideas. Researchers, clinicians, advocates, those living with ME/CFS, and anyone invested in or impacted by ME/CFS are encouraged to attend. The webinar will be recorded. The video recording and transcript will be posted online after the event for future viewing.


Please visit the webinar series event page for details about the agenda and speakers, and upcoming webinars. To register for the immune system webinar, please visit: https://roseliassociates.zoomgov.com/webinar/register/WN_7VLhZg0USom5C1SFKOnl4A#/registration.


Learn about the overall roadmap process, including information on how you can provide input, on the NANDSC Research Roadmap Working Group page. The final research roadmap will be presented at the NANDS Council meeting on May 15-16, 2024.

https://twitter.com/user/status/1707865120854982858
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The recording and transcript of the NIH ME/CFS Research Roadmap: Nervous System Webinar are now available here.


As a reminder, the next webinar in the series, focusing on the immune system, will be on October 19. To register for the webinar, please visit the registration page

---
Time Topic Speakers/Moderators
10:00 AM ET Introduction
Vicky Whittemore, PhD NIH/NINDS

Webinar Moderator: Jarred Younger, PhD

10:05 AM ET Lived Experience Trisha Fisher
10:10 AM ET Talk 1: Cognition Gudrun Lange, PhD
Pain & Fatigue Study Center
10:35 AM ET Talk 2: Dysautonomia Peter Rowe, MD
Johns Hopkins Medicine
11:00 AM ET Talk 3: Cerebral Spinal Fluid Studies Jonas Bergquist, MD, PhD
ME/CFS Collaborative Research Center at Uppsala University
11:20 AM ET Break
11:35 AM ET Talk 4: Neuroimaging Jarred Younger, PhD
University of Alabama at Birmingham
12:00 PM ET Talk 5: Sleep Janet Mullington, PhD
Harvard Medical School
12:25 PM ET Break
12:40 PM ET Talk 6: Peripheral Nervous System Peter Novak, MD, PhD
Brigham and Women’s Hospital
1:05 PM ET Panel Discussion Moderators: Jarred Younger, PhD and
Vicky Whittemore, PhD
1:55 PM ET Conclusion Vicky Whittemore, PhD
2:00 PM ET Adjourn
https://twitter.com/user/status/1709289997843464538
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Email: News from NIH: Registration now open for upcoming ME/CFS Research Roadmap webinars

Registration is now open for upcoming ME/CFS Research Roadmap webinars:


Metabolism—October 26, 2023, 11:00AM ET

Genomics/Genetic Susceptibilities—November 1, 2023, 11:00AM ET

Chronic Infections—November 30, 2023, 11:00AM ET

Physiology—December 8, 2023, 11:00AM ET

Less Studied Pathologies—January 5, 2024, 11:00AM ET

Circulation—January 11, 2024, 11:00AM ET


Agendas are available for the Metabolism and Genomics/Genetic Susceptibilities webinars. Agendas for the other webinars will be posted soon.


Learn about the overall roadmap process, including information on how you can provide input, on the NANDSC Research Roadmap Working Group page. The final research roadmap will be presented at the NANDS Council meeting on May 15-16, 2024.
 
FMMM1 said:
Looks like some of the DecodeME GWAS data will be presented at the webinar on 1st November.

https://www.s4me.info/threads/genet...analysis-2023-taylor-et-al.34243/#post-499699
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As I just posted in response to your other post.
Andy said:
Not publicly they won't. In the public webinar Chris plans to talk about the study in general and provide an overview of our published analysis of questionnaire answers. In the private session after the webinar has finished, he will talk in more detail, which will include any initial results that we might have by then.
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Registration now open for NIH ME/CFS Research Conference, Dec 12-13

"Registration is now open for the upcoming research conference, “Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID,” which will take place on December 12-13, 2023 at NIH Campus in Bethesda, MD. This will be a hybrid meeting where you may attend in-person, or virtually via your browser by joining the NIH Videocast, a live-streaming video platform. For more information about the conference, click here."
 
I note for the future seminars in the ME/CFS Research Roadmap webinars that these are 4 hours long. I woke up 30 minutes late and thought I wouldn't bother thinking it was just an hour, but then had a look 2 hours in and realised there was still plenty to hear.

These are good seminars I think, and nice to put faces to the names of researchers.

I listened to Wenzhong Xiao who comes across as a safe pair of hands. I think he said that he feels confident that, with the tools available including the metabolomics that he concentrates on, they are unravelling the causes of ME/CFS. Praise be! - he was sensible about cortisol, noting the changes in lifestyle including sleep problems that of course will flatten the morning cortisol peak. He also notes other issues that metabolomics researchers need to be aware of, including how different techniques can produce different results. He says that there needs to be more work done on techniques in order to get better data.

He comments that blood may not tell us everything we need to know, that we need to look at tissue (specifically muscle tissue) and cerebral spinal fluid. He mentioned the Systrom study with a 2 day CPET and both blood sampling and muscle biopsy - it's recruiting now. That sounds like an extremely useful study. There was quite a bit of mention of serotonin, I think that must have been a big thing in the earlier talks that I missed. I have expressed my skepticism about the quality of that finding.

If you want to feel that progress is being made and sensible people are working on the problem, Wenzhong's talk is a good one to listen to.

Next was Brent Williams of Columbia University who talked about microbiome. I didn't give this talk the attention it probably deserved. Butyrate was mentioned a lot.

Next up Chris Armstrong at the University of Melbourne.
 
Chris Armstrong
Chris had a bar across the bottom of his slides with the 'chapters' of his talk. And the appropriate chapter title highlighted when he was speaking to it. I thought that was a very nice innovation.

Anyway. The Introduction section covered what metabolomics is and can be skipped if you have a bit of familiarity with it. Also probably the Pre-metabolomics section. One thing that comes across very strongly throughout the talk is the amount of noise in the data - the impact of lifestyle for example, including deconditioning. Chris seems to be in the camp of ME/CFS being multiple things, and so would be in favour of subsetting results.

Case-control studies section. He mentioned 4 studies he was involved with 2015-2019, finding amino acid catabolism, oxidative stress markers and that the host metabolism alters the gut metabolism. The hypothesis goes that amino acids and fatty acids are used for energy production instead of glucose. This limits energy production and also leaves the body short of the building blocks it needs to make things like enzymes. There are down stream impacts on things like the gut, where, with out the enzymes and so on, extraction of nutrients can be affected, and that change in the gut results in a changed microbiome, with further downstream effects. Chris noted Fluge and Mella's study with similar findings. If that hypothesis was correct, then things that place an extra energy demand on the body could result in bigger downstream effects than normal e.g. symptoms of PEM.

Chris's team will soon publish on metabolites in the blood - Kathy Kwong (spelling?). Given what he has said, /I think we can expect to see subsetting of the participants.

Chris thinks that many bio fluids should be studied, many have been understudied e.g. breath condensate, urine

Repeat measures. Metabolites vary a lot from moment to moment. Tracking changes in an individual (eg good day bad day) has much potential. Chris mentioned the exercise studies from Maureen's lab - Germain 2022 and Glass 2023. His lab is also working on this. There is potential in looking at stressors other than exercise e.g. eating, cognitive demands

Design considerations. Getting good controls - disease controls to deal with deconditioning and other lifestyle issues, use of the individual as the control (repeat measures)
Researchers need to work on standardising techniques so that results can be compared better between studies e.g. how is the blood processed. Need to ensure sample size is big enough given the huge variability.

Question - - Chris seemed mildly in favour of supplementation e.g. with amino acids, suggests that many clinicians were using that.


QUESTIONS IN THE PANEL
By the way, with these seminars, listeners can post questions in the chat.

Question on unknown metabolites which were acknowledged as a substantial issue, both in terms of numbers but also tracing studies have found that they are involved in processes. It sounds as though there is still a lot of things to know, not just about ME/CFS but just how healthy bodies function.

Some agreement that a signature of altered metabolites may be the diagnostic outcome, rather than an abnormal level of a single chemical.

Thanks to Vicky Whittemore for chairing the session and just generally for all that she does for people with ME/CFS.



 
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