Peterson Talking for 1 hour at CFSAC Meeting on XMRV

L

leelaplay

member
Messages
1,576
CFSAC Agenda - October 29-30, 2009

thanks for this daisymay - it looks promising, doesn't it - 1 hr for the Whittemore Peterson Institute on xmrv 1st thing on the 1st day and also Dr David Bell for 1/2 hr at 3:30 on the 1st day!

below is the whole agenda for those interested

(ps I also emailed the HHS to ask about being able to watch the meeting live or soon after - I'll attach my letter below in case anyone wants to do the same - may help them realize even more how many people are interested even if unable to be there + think it would be cool to get a live feed or tape to hear it all 1st hand)

CFSAC Agenda - October 29-30, 2009
U.S. Department of Health and Human Services
CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE

Meeting
Thursday, October 29, 2009
9:00 a.m. to 5:00 p.m.

Friday, October 30, 2009
9:00 a.m. to 4:00 p.m.

Room 800, Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201



Agenda

Thursday, October 29, 2009

9:00 a.m.
Call to Order
Opening Remarks

Roll Call, Housekeeping
Dr. James Oleske
Chair, CFSAC

Dr. Wanda Jones
Designated Federal Official

9:15 a.m.
Agency Updates: HRSA, SSA, NIH, FDA, and CDC
Ex Officio Representatives

10:15 a.m.
Presentation: XMRV Association with CFS
Dr. Daniel Peterson
Whittemore Peterson Institute

11:15 a.m.
Committee Discussion
Committee Members

12:15 p.m.
Public Comment
Public

1:15 p.m.
Subcommittee Lunch
Subcommittee Members

2:00 p.m.
Committee Discussion
Committee Members

3:30 p.m.
CFS and FII/MBP
David Bell

4:00 p.m.
Public Comment
Public

5:00 p.m.
Adjourn


Friday, October 30, 2009

9:00 a.m.
Call to Order


Housekeeping

Dr. James Oleske
Chair, CFSAC

Dr. Wanda Jones
Designated Federal Official

9:15 a.m.
Public Comment
Public

10:15 a.m.
Committee Discussion
Committee Members

11:45 a.m.
Special Emphasis Panel


Cheryl Kitt

National Institutes of Health

12:15 p.m.
Subcommittee Lunch
Committee Members

1:30 p.m.
Discussion of Recommendations (Continued)
Advisory Committee Members

3:30 p.m.
Comments from outgoing committee members
Advisory Committee Members

4:00 p.m.
Adjourn
Click to expand...

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html

my email

Good morning,

Im extremely interested in the CFSAC October 29-30, 2009 meeting, but unable to attend. I was wondering if there is anyway that I can watch the while it is taking place? Or if there is no livefeed, will it be taped and made accessible to the public soon? Or if not that, then how would I get access to the minutes and/or other information on the meeting.

Thank you for your assistance in this matter.
Click to expand...

cfsac@hhs.gov
 
A

Aftermath

Guest
Nih

Good to see that the NIH will be represented.

Much has been said about the CDC's bungled efforts to handle this illness. What many PWCs do not realize is that they are really small potatoes compared to NIH.

What we really need is for the NIH to get broadly involved with funding research.
 
L

leelaplay

member
Messages
1,576
CFSAC videocast info

I agree Aftermath - it's like asking to speak with a manager when not happy with the front-line level service.

HHS sent me a personal response in hrs! Here's the info on how the get the videocast live or later

Yes, Ms. xxx, you will be able to watch it via videocast if you have a PC or laptop. Go to the NIH website at: http://videocast.nih.gov/FutureEvents.asp

And scroll down to october 29th Chronic Fatigue Syndrome link to go to: http://videocast.nih.gov/summary.asp?live=7908

You may want to read the FAQ info at: http://videocast.nih.gov/faq/

And test your computer before the date of the videocast.

You will need download Realplayer Software and you can do this via a link on the FAQ page URL that is noted above.

The videocast will be archived a few weeks after the meeting to allow you to view the meeting on demand after it is over. Also, the CFSAC website will have the meeting minutes posted along with archived copies of the testimonies provided for the meeting. CFSAC webpage is located at: http://www.hhs.gov/advcomcfs/
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H

hvs

Senior Member
Messages
292
Aftermath said:
Good to see that the NIH will be represented.

Much has been said about the CDC's bungled efforts to handle this illness. What many PWCs do not realize is that they are really small potatoes compared to NIH.

What we really need is for the NIH to get broadly involved with funding research.
Click to expand...

I think that we have reason to be hopeful about the NIH (from wpinstitute.org):

"September 24, 2009: WPI Awarded Prestigious NIH R01 Grant
New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome

WPI Research Director Dr. Judy Mikovits and collaborator Dr. Jonathan Kerr of St. Georges College in London were awarded this $1.6 million grant by the National Institute of Allergy And Infectious Diseases. This 5 year grant will provide critical support for the ongoing research into the causes and diagnosis of neuro-immune diseases."
 
dannybex

dannybex

Senior Member
Messages
3,578
Location
Seattle
Thanks IslandFinn...

for all the links and info!

"9:00am: Housekeeping"...

Well at least they're giving Reeves a job he's more suited to...
 
C

cold_taste_of_tears

Guest
Tight Fisted

1.6 Million grant?

What a joke!

A disease that affects millions of people in the USA and after this news they give a piffling........(drum roll).

$320,000 per year.

In the UK, a country with 5x smaller population, the DOH (Department of Health) gave Psychiatry, nearly 10x this amount. ($13.8 Million).
http://www.dh.gov.uk/en/Publicationsandstatistics/Pressreleases/DH_4024394

To keep up the disinformation CFS is 'Neurosis with a new banner' and
'Chronic long term tiredness'.

:mad:
 
K

kamina

Retired account
Messages
31
Hey, it's a start. It's approx. 1.6 million more research funding that we ever could have hoped for before the WPI's discovery.
 
L

leelaplay

member
Messages
1,576
cold_taste_of_tears said:
1.6 Million grant?

What a joke!

A disease that affects millions of people in the USA and after this news they give a piffling........(drum roll).

$320,000 per year.

In the UK, a country with 5x smaller population, the DOH (Department of Health) gave Psychiatry, nearly 10x this amount. ($13.8 Million).
http://www.dh.gov.uk/en/Publicationsandstatistics/Pressreleases/DH_4024394

To keep up the disinformation CFS is 'Neurosis with a new banner' and
'Chronic long term tiredness'.

:mad:
Click to expand...

hiya - Don't despair - I actually have no idea of how much money in total is given to ME/CFS by the US gov't. This was just one grant.

Weird that it is the Dept of Psychiatry that's funding ME research in the UK:confused: Well - I'll be pollyannish in reply to what sounds like a darker day for you and say that hopefully the xmrv news, especially under the WPI direction, along with the work of Dr Light on measurable fatigue and other research that is popping up with measurable signs of ME/CFS will de-fang those who want to drag ME/CFS back into the dark ages.
 
H

hvs

Senior Member
Messages
292
1.6 mill. grant is more than the WPI's entire operating budget for one year. ;)
 
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