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

Discussion in 'News from organisations' started by Andy, Jan 16, 2018.

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Page 18 of 31
  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    I hope that's meant in the scientific sense not the BPS sense ;)
     
    SNT Gatchaman, Aug 26, 2023
    #341
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  2. Hutan

    Hutan Moderator Staff Member

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    Hutan, Aug 26, 2023
    #342
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  3. ahimsa

    ahimsa Senior Member (Voting Rights)

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    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!
     
    ahimsa, Aug 27, 2023
    #343
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  4. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    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.
     
    Last edited: Sep 5, 2023
    FMMM1, Sep 5, 2023
    #344
    ahimsa, RedFox, Wonko and 1 other person like this.
  5. FMMM1

    FMMM1 Senior Member (Voting Rights)

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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"
     
    FMMM1, Sep 6, 2023
    #345
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  6. Andy

    Andy Committee Member

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    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!"
     
    Andy, Sep 25, 2023
    #346
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  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    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.

     
    Dolphin, Sep 29, 2023
    #347
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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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
     
    Dolphin, Oct 3, 2023
    #348
    FMMM1, RedFox, Comet and 4 others like this.
  9. Andy

    Andy Committee Member

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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.
     
    Andy, Oct 19, 2023
    #349
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  10. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Bit surprised by the talk of clinical trials today - thought Vicky reasonably reined it in i.e. by discussing the role of the regulator/need for evidence.
     
    FMMM1, Oct 19, 2023
    #350
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  11. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    FMMM1, Oct 21, 2023
    #351
    Sean, alktipping, Fizzlou and 3 others like this.
  12. Andy

    Andy Committee Member

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    As I just posted in response to your other post.
     
    Andy, Oct 21, 2023
    #352
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  13. Hutan

    Hutan Moderator Staff Member

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    A reminder for the metabolism talk coming up a bit later
     
    Hutan, Oct 26, 2023
    #353
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  14. Andy

    Andy Committee Member

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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."
     
    Andy, Oct 26, 2023
    #354
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  15. Hutan

    Hutan Moderator Staff Member

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    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.
     
    Hutan, Oct 26, 2023
    #355
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  16. Hutan

    Hutan Moderator Staff Member

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    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.



     
    Hutan, Oct 26, 2023
    #356
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  17. josepdelafuente

    josepdelafuente Senior Member (Voting Rights)

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    Thanks for these summaries @Hutan !
     
    josepdelafuente, Oct 27, 2023
    #357
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  18. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Today's talk - Wed Nov 1, 2023 3pm – 7pm (GMT)
    Genomics/Genetic Susceptibilities: November 1, 2023
     
    FMMM1, Nov 1, 2023
    #358
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  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Nov 1, 2023
    #359
    Sean, ahimsa and Trish like this.
  20. Jacob Richter

    Jacob Richter Established Member (Voting Rights)

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    Do you know if a recording of this will be made available? Thanks!
     
    Jacob Richter, Nov 1, 2023
    #360
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