2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May

This thread has been split from the NIH News thread
The thread on the paper for the NIH ME/CFS study which is the subject of this symposium is here: Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

Link to the recording of the symposium here https://videocast.nih.gov/watch=54675

https://videocast.nih.gov/watch=54675

ME/CFS Symposium

Air date: Thursday, May 2, 2024, 9:00:00 AM

Time displayed is Eastern Time, Washington DC Local

Description: The purpose of the conference is to present findings the from ME/CFS study and the article Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome to the ME/CFS community. The ME/CFS conference will play a crucial role in advancing the mission of the National Institutes of Health (NIH) by fostering collaboration, disseminating cutting-edge research, and promoting a deeper understanding of ME/CFS. By convening experts, researchers, and healthcare professionals, the conference will serve as a platform for the exchange of knowledge, innovative ideas, and scientific findings related to ME/CFS. This is a one-time conference that has been scheduled to coincide with the publication of the article Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome in Nature magazine.
Author: Dr. Brian Walitt
Runtime: 7 hours

 

Was this already shared? Wasn't sure so leaving here.

'We are excited to announce the upcoming PI-ME/CFS Symposium, which will be held on May 2, 2024 at the NIH Clinical Center in FAES Classrooms 3 & 4.' (Presentation Topics and Panel Discussions embedded)

'Registration now open'

https://mregs.nih.gov/channels/F1P5-F2L3

 

From: NIH MECFS Information <NIH-MECFS_INFORMATION@LIST.NIH.GOV> On Behalf Of NIH MECFS Information List
Sent: Wednesday, April 24, 2024
To: NIH-MECFS_INFORMATION@LIST.NIH.GOV
Subject: News from NIH: Information regarding PI-ME/CFS Symposium on May 2


Registration is now open for the PI-ME/CFS Symposium, which will take place on Thursday, May 2, 2024, from 9:00am – 4pm ET on the NIH Campus in Bethesda, MD. The symposium will focus on findings from the NIH Intramural ME/CFS Study and include scientific presentations by several study authors, as well as panel discussions with researchers and study participants.


This is a hybrid event where you may attend in-person or tune in virtually on NIH videocast, a live-streaming video platform. Please note that registration is not required for virtual attendees. If you are joining by videocast and would like to ask the speakers questions, please email: mecfssymposium@ninds.nih.gov.


For the agenda and more information, please visit the symposium website.

 

Registration is NOT necessary for those viewing remotely.

 

@B_V - I see there's an agenda item listed as "Study Participant Panel: Moderator: Vicky Whittemore" - do you mind if I ask if you've been asked to provide input (as a study participant) for this event?

 

This will be an opportunity to point out the problems with the interpretation of effort preference in ME/CFS.

 

Thank you all so much for sharing this.

Looking at the PDF agenda shows the "effort preference" person is Madian, who I wasn't familiar with prior to this. As far as I see, looks like he's a relatively early career researcher who's primarily looked at non-pharma pain interventions, perceptions of pain, repetitive negative thought and emotional distress, etc. Hrm.


Overview of Neurophysiology: 10:50 -11:50 pm
Moderator: Mark Hallett
• Introduction
• Heart Rate Variability: Mark Levin
• Provocative autonomic testing and neurochemical analysis: David Goldstein
• Neurocognitive function: Joseph Snow
• Effort preferences: Nicholas Madian
• Physiology of repetitive submaximal exercise: EMG, fMRI, and TMS: Patrick Bedard
and Silvina Horovitz
• Summary


(might take me a couple of tries to get the hang of posting here- appreciate your patience!)

https://mregs.nih.gov/FileStorage/NINDS/F1P5-F2L3/Agenda for PI-ME-CFS symposium 4.19.24.pdf

 

Good to see Paul Hwang on the agenda, hopefully talking about WASF3. He's in the 12:45 -1:45 pm slot with several others.

 

I'm on the west coast so this NIH symposium starts at 6 AM my time (Pacific time).

But I'm going to try to watch this section (starts at 9:45 AM for me):

 

And where are they beginning? Effort preference.

 

I can't believe how they are talking about us already!

 

The defensive beginning is not boding well.