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

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)


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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
WASHINGTON — University of Alabama at Birmingham infectious disease director Jeanne Marrazzo will be the National Institutes of Allergy and Infectious Diseases’ director by this fall.

The announcement comes roughly eight months after longtime institute director Anthony Fauci stepped down. Marrazzo will assume her post at the $6.3 billion-dollar agency just as Congress begins hashing out the 2024 budget. Some Republicans have pushed for controls on NIAID-funded pathogen research to be included in that legislation.

Marrazzo is “very well-liked, very respected” and experienced, Fauci told STAT. “She’s going to be a good fit. It’s a great challenge that she’s going to be facing; it’s going to be exciting for her.”

Like Fauci, Marrazzo hails from an HIV research background. Her work focuses largely on sexually transmitted diseases in female reproductive systems. She has worked with the NIH through grants and advisory boards steadily for more than two decades, the institute said in a press release.
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https://www.statnews.com/2023/08/02/nih-jeanne-marrazzo-fauci/
 
From this article:
https://www.washingtonpost.com/heal...iaid-director-jeanne-marrazzo-anothony-fauci/ (edited to add link)
Peter Staley, an HIV activist who sat on the NIH search committee that selected Marrazzo, praised her as one of the “amazing candidates” to fill Fauci’s role.

In social media posts, Staley urged Marrazzo to keep the institute focused on persistent challenges such as HIV and newer concerns such as long covid, and also address how the institute works with the private sector on drug development — a frequent point of contention between activists and the federal government.
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Here's a link to an interview with Marazzo:
https://www.ama-assn.org/delivering...rrazzo-md-health-equity-and-pandemic-s-impact
Todd, thanks. It's great to be here and it is great to ask this critical question because when you look at the disparities in outcomes with COVID, I think history is going to judge us very, very harshly. And the issue is that the access to health care and to the best health care has such a long history of discrimination and putting people in a position where they were already at great disadvantage to access the best "health care possible." You add on that a pandemic, you add on that social isolation, you add onto that physical barriers to getting in, and you're asking people to do telemedicine on top of it. You can imagine that these have added up and really exponentially impacted the experience of our most vulnerable patients. So it's been really hard.
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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/
More than 90 percent of those who contract COVID-19 will recover. But for some, their lives are still far from normal.
“I think we need to do a better job describing to people that the consequences of this infection go way beyond that number”, stated Dr. Jeanne Marrazzo, M.D., Dir. UAB Division of Infectious Diseases.

They’re called long haulers, patients who are virus-free but still have serious symptoms. Long haulers often experience permanent organ damage or continue to experience debilitating symptoms. People of all ages are susceptible.
“There’s the pulmonary or the lung symptoms”, Marrazzo explained. “People, including very young people, including people who did not have asthma or emphysema before continue to experience a sense of breathlessness. They just can’t catch their breath.”
Other issues include heart inflammation, vessel disease, and brain issues.

“The brain issue is a big thing”, stated Marrazzo. “There is this feeling for some people that they just can’t concentrate, they can’t really get back to work. We’ve seen frankly, young people with very demanding jobs not being able to get back to their jobs two or three months after COVID.”
While this is a key point of research, doctors haven’t been able to determine a cause or specific demographic who’s most at risk.
“This is not just people who were limited in their function pre-COVID, these are people who were highly functional in jobs and in society in terms of work, responsibilities, and they’re really having challenges”, Marrazzo said.

UAB is now establishing a clinic to treat and follow post-COVID patients with these symptoms.
“This is an interdisciplinary clinic, we’ll have cardiologists, pulmonologists, neurologists, psychiatrists, and of course infectious disease people working together to try to puzzle out what’s going on.”
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So, fingers crossed, but the appointment could be good for us.
 
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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.
 
Hutan said:
From that article:

Peter Staley, an HIV activist who sat on the NIH search committee that selected Marrazzo, praised her as one of the “amazing candidates” to fill Fauci’s role.

In social media posts, Staley urged Marrazzo to keep the institute focused on persistent challenges such as HIV and newer concerns such as long covid, and also address how the institute works with the private sector on drug development — a frequent point of contention between activists and the federal government.
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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/
 
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.

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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
 
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Hutan said:
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
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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.
 
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"
 
Andy said:
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"
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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
 
Andy said:
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"
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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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