NINDS Advisory Council Meeting Livestream 13 Sept 2018

Gemini

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Watched the Livestream today. ME/CFS mentioned in Dr. Koroshetz, NINDS Director's opening presentation:

Under Leadership changes, Dr Avi Nath, Clinical Director of the ME/CFS Intramural Study was appointed Acting Scientific Director. @Emily Taylor do you know if he's being replaced or if his new position is temporary?

A chart showing members of the new NINDS ME/CFS Working Group was shown: Jen Brea, Patient Advocate; Drs. Bateman and Komaroff; and many others were listed. @Emily Taylor or @Ben HsuBorger do you have a copy of the complete list of members to post here by any chance?

The planned NINDS sponsored ME/CFS April 2019 conference was mentioned.

Several Council members spoke in general about the importance of Patient Advocate involvement in NIH research.

The afternoon presentations on NINDS "Translational Research" projects, a small percentage of their research portfolio which is predominately "Basic Research," was nevertheless very interesting. They are actively involved in development of diagnostics, treatments and medical devices for neurological diseases.
 

Gemini

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So is there to any relationship to the government canceled cfsca group?
@Inester7 Dr. Koroshetz in the July 19, 2018 conference call said this:

"I wanted to say that a new development here at NIH in our attempts to collect information and advice from the wider community to help sculpt the research that we fund here at NIH, we are forming what's called a Working Group of the NINDS Advisory Council on ME/CFS.

The NINDS Advisory Council is a group that is appointed by the Secretary of Health and they meet three times a year and review our funding strategies, funding plans, and in open session, they also discuss with us really important policy questions and research initiatives.


This is an official body that is assigned to advise the NIH and in areas where there's a special need to do special types of planning we form Working Groups of the Council. And we are therefore forming the Working Group of the NINDS Council that will be able to reach out to the community and bring information into NINDS to help inform our decisions. And so invitations have gone out and as soon as the members are confirmed, we will begin planning our first meeting and let, again, the community know about these efforts.

And so we're really looking forward to engaging with this group and hearing their suggestions on how to move the field forward. I want to remind everyone that this group will report through the NINDS Council. Those reports will go out to all the other institutes that are involved in this trans-NIH effort to try to understand ME/CFS and try to work toward a treatment."

https://www.nih.gov/research-traini...s/mecfs/nih-me/cfs-advocacy-call-july-19-2018

Indirect relationship: CFSAC was under control of the Secretary of Health; NINDS Advisory Council is also under his control; the new ME/CFS Working Group reports thru the Advisory Council.

My bolding/underlining.

@jspotila Dr. Koroshetz presented a list of the new ME/CFS Working Group members at today's meeting.
www.occupyme.net/2018/06/22/nih-forms-new-working-group-on-mecfs/
 
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