NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

Denise said:
The livestream difficulties are ridiculous and are making it tough to follow things.
For a patient population plagued with cognitive issues it is additionally exhausting to try to piece things together with all of these gaps in the streaming.

I hope that in addition to posting the videos, transcripts will also be made available.
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And in case someone from NIH reads this -I also hope the slides for each presentation accompany or better yet, are embedded in the transcripts.
 
Denise said:
And in case someone from NIH reads this -I also hope the slides for each presentation accompany or better yet, are embedded in the transcripts.
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ETA - Koroshetz suggested that the conference today and tomorrow may help inform responses to the RFI (revised deadline 1 May 2019) so I hope all of the conference material (videos, slides, transcripts) are promptly made available so we can use them as he suggests.
 
leokitten said:
Hi all from the conference! Not sure if mentioned in thread but auditorium is pretty full, I’m impressed with the turnout as this is a very large place. It’s a great improvement compared to the previous NIH workshops.
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Any idea how many are ME-knowledgeable (specialists, advocates,etc) vs. folks unfamiliar with the field?
 
I personally think there was really nothing there in the Montoya cytokine results... all moderate patients were no different than controls. I’m not sure I buy this bimodal explanation either.

What do people think? I’m sure it was talked about here when the paper came out. Cytokines are a tricky business to measure accurately and reproducibly and technology might need to improve before we see anything.
 
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