Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

[Sasha]

...which is today! The meeting starts at 9am EST which is 2pm UK time. There's a second day tomorrow.

Here's the live-streaming link:

http://www.hhs.gov/live/

and the agenda:

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20130522_agenda.html

 

[Sasha]

Some mike-tapping going on now - about to start, I hope.

 

[Nielk]

Roll call.

 

[Sing]

The image is staying small only. The full screen button won't work. Can others of you get a full screen image somehow?

 

[Sasha]

The image is staying small only. The full screen button won't work. Can others of you get a full screen image somehow?

Not me... mine doesn't work either.

 

[Nielk]

Mine just froze!

 

[Sing]

The trouble for me is that I like to stay well back from the screen because the EMR bothers me, but if I do, I won't be able to see the faces. Rats!

 

[Nielk]

I'm back. Sing - maybe just listen to it.

 

[Nielk]

New member to the committee - Rebecca Collier; a case manager in disability. she has some experience dealing with ME/CFS.

 

[Nielk]

3 new non voting members:

CFIDS of America - Kim Mc leary
IACFSME - Fred Friedberg
NJCFS - Ken Friedman

 

[Nielk]

Wanda Jones said that the way that the FDA conducted their meeting should be a role model for the future.

 

[Sasha]

My connection has dropped out half a dozen times - is this happening to anyone else? I know I have a bad internet connection.

 

[Nielk]

My connection has dropped out half a dozen times - is this happening to anyone else? I know I have a bad internet connection.

It happened to me once but I just open it again in a new tab and there it works. Sorry.

 

[Sasha]

It happened to me once but I just open it again in a new tab and there it works. Sorry.

Thanks - trying another browser, just in case...

 

[Nielk]

They seem to be all excited about the fact that they will allow the public to be somewhat engaged and involved by asking questions at appropriate times.

 

[Nielk]

Dr. Belay of the CDC mentioned a PCOCA call which is available on the CDC website here.

 

[Firestormm]

Hi, I am not able to watch/listen to this one today, but is anyone up to taking notes or even attempting a transcript? I know Mark is watching/making notes - he might be interested to hear from anyone who is also doing similar.

I hope it is worthwhile. Thanks

 

[Nielk]

were you able to hear me at all? (Gabby - on the phone)

 

[snowathlete]

Dr. Belay of the CDC mentioned a PCOCA call which is available on the CDC website here.

I agree with Dr Klimas on a bunch of stuff but not deconditioning. I went from very fit and well to this state in days, it was not deconditioning. Of course, due to low activity I am now a bit de conditioned but I don't think challenging that without first treating the cause is a good idea - quite the opposite in my experience.

The danger is that government love this kind of 'treatment' because it is so cheap! that in my view, threatens to take the focus of the right areas.

 

[Sing]

Striking mix of speakers with a range of competence and incompetence in terms of knowledge and intentions. I feel that the hidden agenda of some is still to achieve nothing, to waste time, to confuse things. I steam with irritation... The others which include our advocates and patients are excellent--so clear. I hope this contrast will illuminate some minds, even the deliberately obtuse.