CCFS Advisory Committee Meeting - Will be Webcast Live

[Summer]

CFS Advisory Committee Meeting - Will be Webcast Live

HHS has posted an agenda for the CFSAC meeting in Washington DC, next Thursday & Friday, Oct 29 & 30, 2009. Detail is sparse, but many suggest this event may mark a new chapter in ME/CFS research, and the world is invited to watch it all, live.

To Access and Print the Agenda LINK

The Event Will be Videocast Live on the Web
Starting at 9:00 Thursday EDT at LINK
For the time where you live, use the World Clock Time Zone Converter

To Prepare in Advance for Viewing the Archived Videos
*You will need to have RealPlayer installed, and you can download the latest version in advance at LINK
*You can test your computer and network connection at LINK

Topics Clearly Indicated in the Agenda
*Dr. Daniel Peterson, MD, from the Whittemore-Peterson Institute, will give a presentation starting at 10:15 am on Oct 29 on XMRV Association with CFS.
*Dr. David S. Bell, MD, will Speak on CFS and FII/MBP the issue of suspected fabricated and/or induced illness in children/Munchausen by Proxy as it relates to ME/CFS - at 3:30 pm
*Three public comment time slots, two on day 1, the third on day 2.

Several Time Slots for Committee Discussion are Listed for Both Days
Though no topics are specified. Of particular interest, especially given the XMRV research, will be the CDCs 5-year CFS research plan, which reportedly is to be discussed in this meeting, and possible announcement of new CFSAC members to replace members who will step down in January. The retiring members are scheduled to make brief comments at the close of day 2.

ETA: Thanks Cort for this addition:

Don't miss the earlier presentations though. The NIH and CDC will have to be presenting what their response to this big finding will be. Their response should include lots of new funding. Let's see if it does. That part of the day will be very interesting. And don't miss the following committee discussion either - that's what they'll be talking about. Here's the agenda:

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

 

[Martlet]

YAY!!! Thanks for this good news.

 

[bettine]

Summer

Summer,
thank you so much for posting all the links for the CFSAC, including the timezone converter, and the RealPlayer download site.
Very handy, I always forget how many hours the time difference is between the USA and The Netherlands, so this is a perfect instrument!

So thanks again!

Bettine

 

[Alexia]

Hi Summer,

Thank you so much for all the information you post on this forum! it helps a lot to be able to keep up with things! I don't know how you manage to get so much information but that you take the trouble to share it with us is really great.

 

[Cort]

Thanks Summer once again! Don't miss the earlier presentations though. The NIH and CDC will have to be presenting what their response to this big finding will be. Their response should include lots of new funding. Let's see if it does. That part of the day will be very interesting. And don't miss the following committee discussion either - that's what they'll be talking about. Here's the agenda:

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

 

[KC22]

Summer...

Thanks for the information. Also, thanks for all of the links to the information coming out on XMRV. We really appreciate you finding and posting it for everyone to see. It makes it a lot easier than trying to find it ourselves.

 

[Marylib]

Thanks for that.

For those of us who do not have the good old American broadband width and unlimited data download (yes we have data caps here in NZ!), will this end up on you tube, posted in several segments?

Hoping we can get it on youtube out here in good old NZ.

Marylib

 

[Ruth]

thinking of trying to attend CFSAC meeting?

Is anyone else thinking of trying to attend the CFSAC meeting in DC? Do you know if one would be allowed to record it? I'm not sure if I am physically up to attending meetings for two days, but I am strongly tempted to try. Anyone else?

I don't see any indication that one should register ahead except for the times to speak (deadline last week). They do mention that there could be space limitations but who knows how much ahead one would need to be there. (I'm not up to waiting in a long line for hours).

Would be interested in knowing if anyone else on the forums is planning to attend. Thanks. Ruth

 

[Daisymay]

Washington DC

Thanks for the time converter, please excuse my ignorance but on the converter it doesn't have Washington DC, would Boston be near enough or is my geography way out?
BW,
Daisymay

 

[leelaplay]

Is anyone else thinking of trying to attend the CFSAC meeting in DC? Do you know if one would be allowed to record it? I'm not sure if I am physically up to attending meetings for two days, but I am strongly tempted to try. Anyone else?

I don't see any indication that one should register ahead except for the times to speak (deadline last week). They do mention that there could be space limitations but who knows how much ahead one would need to be there. (I'm not up to waiting in a long line for hours).

Would be interested in knowing if anyone else on the forums is planning to attend. Thanks. Ruth

hi ruth - Great if you can go! if you go to community, there's a social group preparing for the meeting. Quite a few people are going. I'm not up with all the latest. Cort, the ubiquitous, would probably know. Also, the link at the top of summer's first post on this thread with take you the the NIH website - you could email them and ask about recording. Know they will be web-casting + posting the video soon after + later still posting the wither minutes or transcripts so you might not have to record it yourself.
islandfinn

 

[Ruth]

where is that thread?

hi ruth - Great if you can go! if you go to community, there's a social group preparing for the meeting. Quite a few people are going. I'm not up with all the latest. Cort, the ubiquitous, would probably know. Also, the link at the top of summer's first post on this thread with take you the the NIH website - you could email them and ask about recording. Know they will be web-casting + posting the video soon after + later still posting the wither minutes or transcripts so you might not have to record it yourself.
islandfinn

Hi Islandfinn, Thank you for the suggestion. Unfortunately, I have been searching through the threads for a hour and cannot find that thread. Could you give me some clues? (for a quarter? Since like the CDC I too seem clueless, at least on where to find the thread you mention about going to the CFSAC meeting.) Thanks, Ruth

 

[Ruth]

Are you planning to attend the CFSAC meeting?

Thanks for the time converter, please excuse my ignorance but on the converter it doesn't have Washington DC, would Boston be near enough or is my geography way out?
BW,
Daisymay

Hi Daisymay, Since you mention you are in Washington DC, I was wondering if you are thinking of attending the CFSAC meeting next week. My husband has offered to drive us (from Wisconsin!) if I feel up to going. I would be more motivated if I could also meet some of the participants in this awesome forum. Islandfinn referred to a thread under community that was discussing this but I haven't been able to find that thread after much searching through threads. So hope you or some other reader can help me out. Thanks, Ruth

 

[leelaplay]

Hi Islandfinn, Thank you for the suggestion. Unfortunately, I have been searching through the threads for a hour and cannot find that thread. Could you give me some clues? (for a quarter? Since like the CDC I too seem clueless, at least on where to find the thread you mention about going to the CFSAC meeting.) Thanks, Ruth

hi ruth - I haven't mastered the maze myself yet. at the top of every page on this forum there's a Community category (4th from the left). If you click on that, then click on social groups you'll see the MAD group. From there you can see the discussions, plans and who's going i believe. As I can't go I stopped participating a while ago so am not uptodate enough to guide you more.

here's a link to the govt about the meeting. When I wrote asking about a webcast etc I received a generic response immediately + a personalized one with more info in about 1/2 hr - fastest response ever from the govt for me!
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
good luck! hope no more hrs are lost in the maze!
if

 

[Daisymay]

Sorry don't live in Washington

Sorry Ruth, but you've miss understood, I don't live in Washington, nor will I be going, I live in Scotland, UK, nice idea to meet up never the less!!

No, I was just trying to get the location right on the time converter, it doesn't have Washington DC so I was trying to find out if Boston would be near enough to DC to be in the correct time zone.

Really good idea though for somep people to meet up from this list and go to the meeting. Hope it works out Ruth and you don't find the journey to rough.
Should be a very interesting event!

 

[Ruth]

thank you for clarification

Hi Dasiymay,
Thanks for the reply and encouraging words.
I finally found the community tab that Islandfinn told me about--I was looking in the community lounge in the forums. I will try to go to the CFSAC meeting if I can.

Where do you live in Scotland? My husband's forefathers are from northern Scotland and we travelled in Scotland many years ago (Glasgow and Edinburgh and a lovely drive along some firths). If I can recover some, we may be able to do it again someday.

If I can go to DC, I will do it for all those who can't make it. I think that even if there is not room for all of us in the room, it would be worth it to make the trip and make a statement and also mingle with whomever else they can't fit in the room. But hopefully there will be room for all of us. This is certainly an exciting time for all of us who have been ignored for decades.

Thanks again for the encouraging words. Ruth

 

[Daisymay]

CFSAC meeting NIH note numbers watching, we need to watch this

An ME patinet who went to Judy Mikovits talk at he UOP the other day has posted that the NIH take note of numbers watching these meetings so if we could get as many people as possible trying to view it over the 2 days and beyond it would sent out a strong message that there is a great deal of interest AND that we are all very aware of the XMRV research so they have to take action.

The first email on this thread by Summer gives very good info on how to view the proceedings.

Would it be an idea for peple in the US to contact the media over there about this? Living in the UK I'm not sure whether such a meeting would normally get any media attention, somehow doubt it, but maybe on this occasion with Peterson talking you could get some journo interested? Perhaps NYT?

BW,

Daisymay

 

[mezombie]

Listen to Peterson LIVE on videocast -- on NOW

Just a reminder.

 

[Kati]

Where is Reeves? Did he take the wrong plane?

 

[garcia]

I'm currently watching and it just says "2009 mHealth summit. Will resume at 1.30p" on my screen. Is this what others are seeing?

 

[bluebird]

I think you need to scroll down and click on the next orange 'watch' link beside this text>

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 1

http://videocast.nih.gov/default.asp