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

  1. cfsandmore

    cfsandmore Senior Member (Voting Rights)

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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I can't remember whether this was posted here before or not:

    https://www.nih.gov/mecfs/events
    Upcoming Events

    Save the date for two NIH ME/CFS events in December 2023! Additional details will be provided via the NIH ME/CFS listserv and posted below.

    • NIH ME/CFS Young and Early Investigators Conference
      December 11, 2023
      Bethesda, MD (in-person and virtual)
    • Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID
      December 12-13, 2023
      Bethesda, MD (in-person and virtual)


     
  4. Trish

    Trish Moderator Staff Member

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  5. Andy

    Andy Committee Member

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  6. Trish

    Trish Moderator Staff Member

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  7. Laurie P

    Laurie P Senior Member (Voting Rights)

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    NIH selects Dr. Jeanne Marrazzo as director of the National Institute of Allergy and Infectious Diseases

    https://www.nih.gov/news-events/new...ational-institute-allergy-infectious-diseases

    Infectious disease expert Jeanne Marrazzo assumes Fauci role at NIH
    https://www.statnews.com/2023/08/02/nih-jeanne-marrazzo-fauci/
     
    Ariel, MEMarge, Helene and 4 others like this.
  8. Hutan

    Hutan Moderator Staff Member

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    From this article:
    https://www.washingtonpost.com/heal...iaid-director-jeanne-marrazzo-anothony-fauci/ (edited to add link)
    Here's a link to an interview with Marazzo:
    https://www.ama-assn.org/delivering...rrazzo-md-health-equity-and-pandemic-s-impact
    And she's aware of Long covid, e.g. this 2020 article:
    https://www.wsfa.com/2020/11/12/long-haulers-covid-survivors-grapple-with-lingering-symptoms/
    So, fingers crossed, but the appointment could be good for us.
     
    Last edited: Aug 2, 2023
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  9. Dakota15

    Dakota15 Senior Member (Voting Rights)

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    @Hutan Marrazzo was a PI at UAB for the RECOVER Initiative, also if not stated.

    "SARS-CoV-2 has been a challenge in so many ways, not the least of which is the conundrum of long COVID, or PASC,” said Jeanne Marrazzo, M.D., director of the Division of Infectious Diseases and lead investigator for the project"

    https://www.uab.edu/news/research/i...dy-to-enroll-participants-from-the-deep-south

    On a personal level, I messaged with Dr. Marrazzo after our local press in Minnesota highlighted the plight of LC/ME last June. She messaged me "Thank you Billy. We all need to work hard to figure this out."

    I hope as Director with NIAID she can usher in positive change.
     
  10. Laurie P

    Laurie P Senior Member (Voting Rights)

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    Link to the article at The Washington Post. I didn't get a paywall.

    NIH taps Jeanne Marrazzo to succeed Fauci as infectious-disease chief

    https://www.washingtonpost.com/heal...iaid-director-jeanne-marrazzo-anothony-fauci/
     
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  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    From: NIH MECFS Information <NIH-MECFS_INFORMATION at LIST.NIH.GOV> On Behalf Of NIH MECFS Information List
    Sent: Thursday, August 3, 2023 3:02 PM
    To: NIH-MECFS_INFORMATION at LIST.NIH.GOV
    Subject: News from NIH: ME/CFS Research Roadmap Webinar Series Kickoff – August 25, 2023



    The first ME/CFS Research Roadmap webinar will take place on August 25, 2023, from 10:00 am – 2:00 pm ET. Focusing on how ME/CFS impacts the nervous 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 and 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,
    https://event.roseliassociates.com/me-cfs-research-roadmap/
    Registration information is forthcoming. Learn about the overall roadmap process, including information on how you can provide input, on the NANDSC Research Roadmap Working Group page.,
    https://www.ninds.nih.gov/about-nin...l/nandsc-mecfs-research-roadmap-working-group
    Please note that in order to best accommodate this comprehensive effort, the final research roadmap will now be presented at the NANDS Council meeting on May 15-16, 2024.

     
    Last edited: Aug 3, 2023
  12. Hutan

    Hutan Moderator Staff Member

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    Here's a link to the registration page for the series of webinars.
    https://event.roseliassociates.com/me-cfs-research-roadmap/register/
    As the tweet says, 'Registration information is forthcoming'. You can't register yet.

    The topics of the series of webinars:
    Nervous System: August 25, 2023
    Immune System: TBD
    Circulation: TBD
    Metabolism: TBD
    Genomics/Genetic Susceptibilities: November 1, 2023
    Chronic Infection: TBD
    Physiology: December 1, 2023
     
    Last edited: Aug 3, 2023
  13. Dakota15

    Dakota15 Senior Member (Voting Rights)

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    Obviously just a trivial thing, but the new NIAID Director did "like" this yesterday on Twitter (I'm not calling it X...)

    upload_2023-8-3_13-26-25.png
     
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  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I just checked and with five days to go, you still can’t register. Hope it doesn’t affect the numbers.
     
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  15. Denise

    Denise Senior Member (Voting Rights)

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  16. Andy

    Andy Committee Member

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    Email from NIH.

    REMINDER: NIH ME/CFS Research Roadmap Webinar: Nervous System – August 25, 2023, 10am-2pm

    "The first ME/CFS Research Roadmap webinar focused on the nervous system will take place on August 25, 2023, from 10:00 am – 2:00 pm ET. Please visit the webinar series website for the agenda, speakers, and more details. Join the Zoom webinar here (passcode: 616680). Click here to add the event to your calendar and for information about how to join by phone.

    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 and posted online after the event for future viewing.

    Learn about the overall roadmap process, including information on how you can provide input, on the NANDSC ME/CFS Research Roadmap Working Group page"
     
    Ash, Anna H, Hutan and 8 others like this.
  17. Jacob Richter

    Jacob Richter Established Member (Voting Rights)

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    In case useful as background context for those attending, here's the list of all active NIH research projects in ME/CFS that are NOT run out of the mothership in Bethesda, MD:
    https://reporter.nih.gov/search/6hBR43tYGU6vxH4wMar-OQ/projects?shared=true
     
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  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Friday August 25th
    Time Topic Speakers/Moderators
    10:00 AM ET
    Introduction
    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
    1:55 PM ET
    Conclusion
    2:00 PM ET
    Adjourn
     
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  19. Trish

    Trish Moderator Staff Member

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    For those in the UK, the times are from 3pm to 7pm on Friday afternoon.
     
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  20. mango

    mango Senior Member (Voting Rights)

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