CFSAC webinar 17 & 18 May 2016

[Sasha]

Edit: here's the link to watch the meeting:

http://www.hhs.gov/advcomcfs/access.html

Agenda

CFSAC 2016 Webinar Meeting

12:00 p.m. to 5:00 p.m. (ET)

May 17, 2016


12:00 p.m.
Call to Order
Roll Call
Webinar Logistics
Susan M. Levine, M.D.
Chair
Nancy C. Lee, M.D, D.F.O.
Deputy Assistant Secretary for Health-Women’s Health

12:15
Opening Remarks
Susan M. Levine, M.D.
Chair

12:25
Agency Updates
CDC, CMS, AHRQ, SSA,
Committee

1:10
Updates from Liaison Organizations
Carol Head, SolveCFS
Steve Krafchick, IACFSME

1:30
Public Comment
Public

2:00
Report from the ME/CFS Centers of Excellence Working Group
Gary E. Kaplan, D.O.
Working Group Chair

3:00
Break

3:15
Committee Discussions and Recommendations
Susan M. Levine, M.D.
Committee

4:50
Plans for Day 2
Susan M. Levine, M.D.
Chair

5:00 p.m.
Adjourn


Agenda

CFSAC 2016 Webinar Meeting

12:00 p.m. to 5:00 p.m. (ET)

May 18, 2016

12:00 p.m.
Call to Order
Roll Call
Webinar Logistics
Susan M. Levine, M.D.
Chair
Nancy C. Lee, M.D., D.F.O.

12:10
Opening Remarks
Susan M. Levine, M.D.
Chair

12:20
Agency Updates
NIH, FDA, HRSA,
Committee

1:15
Public Comment
Public

1:45
Report from the IOM/P2P Working Group
Donna Pearson
Working Group Chair

2:30
Committee Discussions and Recommendations
Susan M. Levine, M.D.
Committee

3:15
Break

3:30
Committee Discussions – Future CFSAC Working Groups and Activities
Susan M. Levine, M.D.
Chair

4:45
Wrap Up
Susan M. Levine, M.D.
Chair

5:00 p.m.
Adjourn

________________________________________________________

The CFSAC Support Team

Email: cfsac@hhs.gov

Website: http://www.hhs.gov/advcomcfs/index.html

 

[Kati]

On this link http://www.hhs.gov/advcomcfs/meetings/index.html there is a link to the videocast when time comes. (Correction: disregard, my mistake this limk is for previous meetings)

Would it be too much asking for good news at CFSAC this year?

 

[Sasha]

Would it be too much asking for good news at CFSAC this year?

Well, it's been an amazing year, so let's hope so! Lots of hopeful signs.

 

[Sasha]

Would it be too much asking for good news at CFSAC this year?

That's weird - on that link, it says the meeting is the 18th & 19th, but on the original info it was the 17th and 18th - that is, here:

http://www.hhs.gov/advcomcfs/index.html

I wonder which it is?

 

[Kati]

That's weird - on that link, it says the meeting is the 18th & 19th, but on the original info it was the 17th and 18th - that is, here:

http://www.hhs.gov/advcomcfs/index.html

I wonder which it is?

Sorry my mistake. IT says AUGUST 18-19. I should delete my post to not mislead people.

 

[Sasha]

Sorry my mistake. IT says AUGUST 18-19. I should delete my post to not mislead people.

That was last year!

This is the link for this year:

http://www.hhs.gov/advcomcfs/access.html

 

[shannah]

It overlaps with the Lyme conference webcast from Ottawa on Tuesday the 17th.

 

[Seven7]

I am a bit confused, As a community I don't see even a topic on the disease name and I see some people adapting SEID. so shouldn't this be discussed / decided?

 

[Kati]

I am a bit confused, As a community I don't see even a topic on the disease name and I see some people adapting SEID. so shouldn't this be discussed / decided?

Uhm well you know, CFSAC has no power. They can only advise the secretary and in the past decade, that didn't go too well. There might be chances that the #Millionsmissing protest might be more helpful but who knows?

 

[Sasha]

Bump!

Just flagging this up for tomorrow. 5pm to midnight UK time, I think. Some interesting stuff.

 

[Gemini]

Bump!

Just flagging this up for tomorrow. 5pm to midnight UK time, I think. Some interesting stuff.

By Phone Call-in number 888-946-7204 Passcode 7905259

By Computer https://www.mymeetings.com/nc/join.php?i=PWXW7133614&p=7905259&t=c

 

[Sasha]

Four hours to go! Very much looking forward to hearing the agency updates (for once!) after all that's happened with the NIH and the intramural study in the past few months.

 

[shannah]

I just noticed it's two half days this time. From 2 days to 1 1/2 days and now essentially down to 1 day. Keeps getting shorter and shorter doesn't it?

 

[Sasha]

Bump!

Starts in an hour.

Don't forget that if you're going to watch it on your computer you need to install that programme first.

 

[Valentijn]

I'm in a hotel with the Wireless Network From Hell (and no wired internet), so I'm going to have sit this one out

 

[Sasha]

This starts in ten minutes.

Slightly confused about whether I've managed to upload the software correctly and am actually looking at the right hting, but I suppose I'll find out...

 

[Sasha]

I think I'm looking at the right thing but has anyone got audio yet?

 

[Sasha]

Either this is running five minutes late or I've made a mess of it.

 

[Bob]

No audio (or video) for me yet either - just a holding slide showing.

 

[waiting]

I think I'm looking at the right thing but has anyone got audio yet?

Same here -- can see the title screen, but no audio.