Next CFSAC meeting June 16-17, 2014

[Denise]

To those who will speak what is the general message this time around??? I just hope we can finally see some progress and move forward and demand some more actionable items.

I suspect a number of people will be addressing concerns about P2P and concerns about lack of cohesive progress on the part of most federal agencies.

 

[Seven7]

I wonder why we are reinventing the wheal and we cannot use 2 day exercise testing to identify CFS. We do not need to invest to staff Hospital since they already have the equipment.

 

[Nielk]

The meeting will be starting in an hour. You can follow it here - http://www.hhs.gov/live

 

[Nielk]

Agenda for today's meeting


12: 00 p.m.

Call to Order
Roll Call
Nancy C. Lee, M.D.
Acting Chair
Designated Federal Officer (DFO)


12:10 p.m.

Logistics
Nancy C. Lee, M.D.
Acting Chair
Designated Federal Officer (DFO)

12:15 p.m.

Opening Remarks
Request Approval - CFSAC Minutes March 11, 2014


12:30 p.m.

Agency Updates
CDC, AHRQ, NIH

1:30 p.m.

Public Comment
Public

2:30 p.m.

Break

2:45 p.m.

ME/CFS Researcher and Clinician-
Scientist Recruitment Workgroup
Workgroup Members

3:45 p.m.

Committee Discussion
Committee members

5:00 p.m.

Adjourn

 

[Nielk]

....waiting

 

[Nielk]

For information about the new CFSAC members see Jennie's blog http://www.occupycfs.com/2014/06/06/just-in-new-cfsac-members/

 

[NK17]

....waiting

Thanks Nielk for following and participating for all the PWME that can't.

I'm in the super crash zone today, but I know I can count on you and the others to watch our backs, if I can use this expression ...

 

[Nielk]

Thanks Nielk for following and participating for all the PWME that can't.

I'm in the super crash zone today, but I know I can count on you and the others to watch our backs, if I can use this expression ...

I am just a spectator this time. I couldn't prepare but am looking forward to hearing @Andrew .

 

[NK17]

Thanks anyway for being a spectator .

 

[JT1024]

Too bad there is not a live feed of OUR thoughts and comments for all the CSFAC members to see...

 

[Nielk]

New members:

Dr. Jose Montoya of Stanford
Dr. Alisa Koch - Rheumatologist - at Eli Lilly
Donna Pearson - patient, advocate, VP of Massachusetts ME/CFS

 

[JT1024]

Looks like #MECFS and #CFSAC together works for a search on twitter

 

[Nielk]

Dr. Wanda Jones was the cheerleader at the start of the meeting. Told us about how muh has been accomplished at CFSAC in the past ten years. She is at awe of the progress. Phenomenal changes have taken place.

 

[Nielk]

CDC's roll call of all their CFS activities.

 

[NK17]

New members:

Dr. Jose Montoya of Stanford
Dr. Alisa Koch - Rheumatologist - at Eli Lilly
Donna Pearson - patient, advocate, VP of Massachusetts ME/CFS

MONTOYA!!!!
Dr. Jose Gilberto Montoya is music to my PWME ears .

 

[Nielk]

They are being so devilishly obscure about anything P2P! It is maddening.

 

[shannah]

Political doublespeak! I see they've replaced the usual rep with one who is more politically eloquent and detached.

 

[Nielk]

P2P spin - at work! http://www.occupycfs.com/2014/06/12/p2p-spin/

 

[Nielk]

Best question by Donna-
Why was CFSAC not involved in P2P planning?

 

[Nielk]

Jeanette Burmeister - dedicating testimony thanking Eileen Holderman for her fantastic work as patient advocate!
Thank you, Eileen!