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USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025
- Thread starter Andy
- Start date
Helene
Senior Member (Voting Rights)
I'll answer that myself. Jarred Younger says in his youtube above that it will be recorded & available later.
This is on now!!
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.
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.
I meant to listen to this, but the call was in the middle of my night and I didn't make it. Did anyone listen to the call who can give their overall impression? I can't access Twitter - those tweets linked above don't really say anything, summarising here in case they disappear:
"Gudrun Lange spoke about cognitive function and said it was common.
Peter Rowe talked about dysautonomia
Jarred Younger said that few people are willing to tackle ME/CFS, EDS, MCAS
Then a person with ME/CFS (Trisha) talked about her lived experience having had the disease for 30 years"
Is there anything of substance in later tweets?
Just looking at the agenda, this webinar, as the visible part of the
"The NIH #MECFS Research Roadmap - nervous system"
is looking rather underwhelming.
"Gudrun Lange spoke about cognitive function and said it was common.
Peter Rowe talked about dysautonomia
Jarred Younger said that few people are willing to tackle ME/CFS, EDS, MCAS
Then a person with ME/CFS (Trisha) talked about her lived experience having had the disease for 30 years"
Is there anything of substance in later tweets?
Just looking at the agenda, this webinar, as the visible part of the
"The NIH #MECFS Research Roadmap - nervous system"
is looking rather underwhelming.
ahimsa
Senior Member (Voting Rights)
Logged on to twitter/X (still check every week or so) and saw this post, a graph with some unpublished data that was shown during the webinar.
I'm attaching a screenshot rather than doing a link since there are still some access issues when not logged to the site.
I'm attaching a screenshot rather than doing a link since there are still some access issues when not logged to the site.
Hoopoe
Senior Member (Voting Rights)
It was very good. Most information was well known (but still useful for people new to ME/CFS). Some information was new and interesting. There was a lot of discussion later about clinical trials and outcomes and I sensed a lot of interest in setting up clinical trials. There was a feeling of hope and optimism.
Promising.