Watch CFSAC meeting online Monday 9-4 EST May 10

citybug

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http://www.hhs.gov/advcomcfs/index.html
The meeting will be webcast at http://videocast.nih.gov
Please click on "Click to Watch."
Realplayer is required to view the videocast. This meeting will also be
archived.

Chronic Fatigue Syndrome Advisory Committee
US Department of Health and Human Services



Agenda -- CFSAC Spring 2010 Meeting

May 10, 2010

9:00 am
Call to Order
Opening Remarks

Roll Call, Housekeeping
Dr. Christopher Snell
Chair, CFSAC

Dr. Wanda Jones
Designated Federal Official

9:15 am
Welcome Statement from the Assistant Secretary for Health

New Members Statement on CFSAC Interests/Goals
Dr. Howard K. Koh

CFSAC New Members

10:00 am
Remarks from Dr. Elizabeth Unger
Dr. Elizabeth Unger

10:30 am
Blood Safety Update on XMRV
Dr. Jerry Holmberg

11:00 am
Review/Update of past CFSAC recommendations
Committee Members

12:30 pm
Subcommittee Lunch
Subcommittee Members

1:30 pm
Public Comment
(on CFSAC charter)
Public

2:00 pm
Review and Discussion of CFSAC Charter and ByLaws
Committee Members

4:00 pm
Adjourn
 

Sasha

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Fascinating article by Cort today on the experiences of a former CFSAC rep called Rebecca Artman. This seems an important quote:

[Cort] We've had better patient turnout at this CFSAC meetings but it’s been pretty dismal for the last couple of years. Is it important that patients turn out?

[Rebecca] It is very important. I did some digging and found out that like the other parts of the government that the every advisory committee has measures the government uses to determine if they are doing useful work. One of whether they are turning out recommendations and another is patient attendance. If patient attendance is low the government assumes there’s little interest.

These measures are used by congress, if there is no interest in the CFSAC then it can be expected by Congress that it isn’t an area of priority for funding. If you think that CFS needs more money for research then come to the CFSAC meetings and bring your family and friends.​

Of course, patient attendance is presumably low in CFS because patients are too ill to attend - Catch 22. Is there any way of them registering how many people watch online? Or having them be aware of the level of interest and the fact that CFS patients are generally too sick to attend?

Anyway, it looks as though if you can go, you should go!
 

shiso

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CFSAC does monitor how many people are accessing the videocast during the meeting (at least they did last time - Wanda Jones made note of the numbers a few times).
 

Sasha

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CFSAC does monitor how many people are accessing the videocast during the meeting (at least they did last time - Wanda Jones made note of the numbers a few times).
That's interesting - I often have tech problems (I'm a complete computer dummy) that mean I don't bother watching stuff live and wait for it to turn up on YouTube.

Does this mean that people like me should try harder? And that I should leave the online feed going all day even if I'm not watching it all day?

Do they count the YouTube viewings?

Let's make our audience look as big as it is and help get that funding rolling in! And presumably we overseas people looking online count as much as people in the US (presumably CFSAC can't tell where we're accessing the videocast from).
 

SeaShel

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Sasha - I think that's a great plan, to leave your feed going even if you're not viewing consistently. If it's about numbers, that's one thing we can do - give them numbers. Just don't expect us to have the money or energy to get to DC!

I would doubt they look at YouTube views.

Shelley
 

Hope123

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I suggest if people can't see the live broadcast, they see the archived version.

The last 2 meetings, 800+ people watched live online and I believed the final total (along with archived) on the gov't website was 2000+.

(Yes, I am geeky enough to take notes on this stuff. First number from Dr. Jones, second number from CFS advocates who lobbied gov't to allow broadcast.)

I don't think they count Youtube viewings though. What I would suggest is that if they total broadcast is too long or not put into short 10 minute segments like it is on Youtube (for people with cognitive issues), people should pay attention to the Youtube broadcast but run the gov't broadcast at some other time to make sure they are count. (In the past, Youtube segments were placed by dedicated individuals with CFS or the CAA, NOT the gov't.)
 

JillBohr

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Do we have any members from the DC, MD, VA and PA area that may be close enough to attend? I wonder if they have any healthy relatives that may help in turning out? It would be great to have more people show up. Unfortunately, I will be working during this time but I look forward to watching it in the archives and please post anything important that happens.
 

Kati

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Bumping this thread up and remember you need to have realplayer downloaded in order to view.
 

citybug

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Also there will be new members of committee:
Roster of Committee Members
Voting Members

Chair
Christopher Snell, PhD
Stockton, CA
Term: 04/01/07 to 04/01/11

Dane B. Cook, PhD
Madison, WI
Term: 05/10/10 to 05/10/14

Ronald Glaser, Ph.D
Columbus, OH
Term: 04/01/07 to 04/01/11

Arthur J. Hartz, MD, PhD
Iowa City, IA
Term: 04/01/07 to 04/01/11

Eileen Holderman
Galveston, TX
Term: 05/10/10 to 05/10/14

Michael Houghton, PhD
Danville, CA
Term: 05/10/10 to 05/10/14

Leonard Jason, PhD
Chicago, IL
Term: 04/01/07 to 04/01/11

Nancy Klimas, MD
Miami, FL
Term: 04/01/07 to 04/01/11

Susan M. Levine, MD
New York, NY
Term: 05/10/10 to 05/10/14

Gailen Marshall Jr., MD, PhD
Jackson, MS
Term: 05/10/10 to 05/10/14

Jason Newfield, Esq.
Garden City, NJ
Term: 07/01/06 to 07/01/10
 

JillBohr

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Please help! The meeting starts in about 1 hour and 15 minutes and I need to take my kids to school and go to work. Could someone please record this and send it to my personal email address? You can email me privately here and I will give you my email address. I have tried recording previous sessions and sometimes it stalls out on me. I just do not have the patience to wait until it is archived. Also, please please make any comments or notes to anything that is newsworthy. Thank you!
 

jspotila

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Anyone else watching and not getting sound. It's 9:06 am Eastern, and no one is sitting at the tables. I'm assuming the sound is off for that reason . . .