NIH NANDS Council Meeting: ME/CFS RFI Summary Report Sept 4, 2019 Livestream

[Gemini]

A summary Report of input received from the public responding to the ME/CFS RFI by its May 1, 2019 deadline will be presented to the NIH NANDS Council on September 4, 2019.

The meeting will be livestreamed starting at 12:30 PM ET; video will be archived and accessible online.

On the day of the meeting the livestream is here:

https://videocast.nih.gov

Text of the Report will be posted to an NIH website after this presentation according to NIH.

The objectives of the ME/CFS RFI were discussed in this thread:

https://forums.phoenixrising.me/thr...ce-me-cfs-research-deadline-may-1-2019.75562/

 

[Foxglove]

Michiel Tack on the other forum read through everything and produced a summary here:
https://www.s4me.info/threads/us-ni...to-advance-me-cfs-research.10884/#post-195026

 

[Gemini]

Michiel Tack on the other forum read through everything and produced a summary here:
https://www.s4me.info/threads/us-ni...to-advance-me-cfs-research.10884/#post-195026

Thanks for the link, @Foxglove.

Agree with those folks re: the volume of input NIH received. I've gone through some of it and there's some really good, sound suggestions from the public there.

I'm curious about who at NIH was tasked with reading and summarizing all of the input? And whether they'll be making recommendations to the NANDS Council on actions to take to resolve research problems based on it?

 

[Gemini]

Today, the Trans-NIH ME/CFS Working Group announced the ME/CFS RFI Summary Report presentation will start at about 1:20 PM ET at the NANDS Council Meeting on September 4, 2019.

 

[Foxglove]

And whether they'll be making recommendations to the NANDS Council on actions to take to resolve research problems based on it?

I sure hope there will be action taken.

I agree some of those recommendations were really good. If they can follow the good advice we'll be better off.

 

[Gemini]

bump. presentation tomorrow starts at about 1:20 PM Eastern Time.

 

[Gemini]

NIH Videocast Website: http://videocast.nih.gov/
AGENDA
September 4, 2019

OPEN SESSION

12:30 p.m.

I. Call to Order and Opening Remarks
Dr. Walter Koroshetz, Chairperson, Director, NINDS

12:35 p.m.

II. Report of the Director, Division of Extramural Activities, NINDS
Dr. Robert Finkelstein

A. Consideration of Minutes of May 23-24, Meeting

B. Confirmation of Dates for Future Council Meetings

Wed. & Thurs., February 5-6, 2020

Wed. & Thurs., May 27-28, 2020

Wed. & Thurs., September 9-10, 2020

Wed. & Thurs., February 10-11, 2021

Wed. & Thurs., May 26-27, 2021

Wed. & Thurs., September 8-9, 2021

C. Other Items

Expedited Review Process

Extramural Announcements

12:45 p.m.

III. Report of the Director, NINDS
Dr. Walter Koroshetz

1:05 p.m.

IV. Discussion of Director’s Report

1:20 p.m.

V. ME/CFS Working Group Report to Council
Dr. Andrew Breeden, Health Program Specialist, NINDS
Dr. Steven Roberds, Chief Scientific Officer, Tuberous Sclerosis Alliance

2:05 p.m.

VI. 2019 ADRD Summit Report
Dr. Rod Corriveau, Program Director, NINDS
Dr. Julie Schneider, The Deborah R. And Edgar D. Jannotta Presidential Professor of Pathology and Neurological Sciences,
Associate Director, Rush Alzheimer's Disease Center, Rush University Medical Center

2:45 p.m.

BREAK

3:00 p.m.

VII. Update from the Scientific Director of Intramural Research
Dr. Lorna Role, Scientific Director, NINDS



4:00 p.m.

VIII. NINDS Early Stage Investigator Analysis
Dr. William Daley, Health Program Specialist, NINDS

4:30 p.m.

IX. Initiatives Requiring Concept Clearance

6:00 p.m. **

ADJOURNMENT

 

[Foxglove]

ongoing now

 

[Gemini]

The report of the NANDSC Working Group for ME/CFS Research is now online: https://www.ninds.nih.gov/sites/def...cil_working_group_for_mecfs_research_508c.pdf.