Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID Dec. 12-13, 2023

Can anyone find an agenda for this meeting?


https://web.cvent.com/event/efc45a4d-bcc1-4832-b537-8905ae828077/summary

 

@Jaybee00 - this is weird. It used to link to the draft agenda and now I can't find it. Perhaps they are in the process of putting up the final agenda?

 

https://custom.cvent.com/A860A3AD1A...ae828077/0b7884e3056d46428d214b69658733ce.pdf

 

Thanks.

Nath speaking about LC not MECFS study. Ron Davis not here but Mark Davis is.

 

Please note that there is a deadline for registering—says Dec 5 but I was able to register today.

 

Starting soon!!

 

Hardwired to router but video keeps cutting out and screen blurring. Is it me or them?

edited:
seems to have resolved in last few minutes

 

https://twitter.com/user/status/1734572980401774808


...If you experience any difficulty accessing the virtual platform, please email EventsNIAID@luminacorps.com."

 

https://twitter.com/user/status/1734590290751631437


Mark Davis suggests immunological and metabolic changes and points out gender differences in ROS levels. Some tests on NAC vs metformin on T cell levels show these may mitigate ROS. #NIHMC23

 

Online attendance less than 400 and a nearly empty auditorium.

Very strong lived experience testimony so far.

 

Yeah auditorium looks pretty sparse….

 

Ian Lipkin made the briefest of comments regarding a potential project with 5000 ME patients and a collaboration with Chris Ponting. Slide up for less than a couple of seconds but I did catch it.

 

Added screenshot here separately regarding a potential GWAS.

 

Not really seen much of anything on Twitter apart from this from Todd Davenport from Workwell,

"If I hear another researcher claim the six-minute walk test is a valid test of cardiorespiratory function in people living with PEM, I am going to scream loudly enough that you are going to hear it no matter how far apart we live. C'mon, NIH group. You're killing me."

 

Lipkin described 3 projects he would like funding.

Jessica Maya from Maureen Hansen’s group talked a tiny bit more on PD-1 blockade drugs and viral persistence.

Nath had slide with ‘cognitive therapy’ for brain fog treatment.

Karl Johan Tronstad and David Systrom very good especially for new into field researchers. Tronstad linked to WASF3. Systrom gave a little more on the design of the LIFT study.

Panel about to start

 

Had the impression that most researchers talked about past research that was already published, not about what they are working on now or what is in the pipeline.

 

Via email:

Greetings Virtual Participants,

As a reminder, to participate via your browser by joining the NIH VideoCast today, December 13, please use the following link: https://videocast.nih.gov/watch=52738


Due to the significant online presence, remote questions are encouraged but may not be addressed in real-time. If you would like to submit a question for consideration, please email Grace Tollini at grace.tollini@nih.gov. Please note the speaker or session in the subject line if possible. Questions that are not addressed will be collected and every attempt made to address them in a timely manner.


If you experience any difficulty accessing the virtual platform, please emailEventsNIAID@luminacorps.com.

 

Are "PD-1 blockade drugs" linked to this paper -
"Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome"?
https://pubmed.ncbi.nlm.nih.gov/28018972/

 

Michelle James (Stanford) just said they were doing TSPO-PET/MRI imaging of the whole body, not just the brain, and found increased signals in muscle of (female but not male) ME/CFS patients compared to controls. Small sample size though, I think only 6 pairs.

They are also look into GPR84 as a more specific & sensitive biomarker than TSPO.

EDIT: here's an example of what was shown:

 

I don't know what those pictures mean, but the musculature comparison does look odd. Be interesting to see the comparisons with a different protein.