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

How will the return of unused Covid funds affect the 1.6 billion NIH received? https://www.npr.org/2023/05/31/1178...pent-covid-relief-money-democrats-republicans

 

NIH ME/CFS Advocacy Call: May 1, 2023

Video

https://www.youtube.com/watch?v=ftierohHbSM

Transcript https://www.nih.gov/mecfs/nih-me/cfs-advocacy-call-may-1-2023

Presentation: Simmaron Research: Scientifically Redefining ME/CFS (by Drs. Avik Roy & Gunnar Gottschalk)
https://www.nih.gov/sites/default/f...-research-scientifically-redefining-mecfs.pdf

 

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)

 

From the NIH funded ME/CFS Research Network on Twitter,
"BIG Data News! New comprehensive dataset from #MECFSnet partners at @jacksonlab and @BatemanHorne. More than 1,200 variables --the FIRST publicly available dataset with GUIDS. Apply for access today! https://ow.ly/hncu50Pqhks "

 

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/

 

@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.

 

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/

 

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.

 

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

 

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

 

@Dolphin
Apparently registration is no longer required (per this page https://event.roseliassociates.com/me-cfs-research-roadmap/calendar/)
It should NOT require digging around to find this out though.... Grrrr!

 

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"

 

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

 

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

 

Jarred Younger