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CFSAC meeting Oct 3-4, 2012

Sasha

Fine, thank you
Messages
17,863
Location
UK
In July, I filed a FOIA request to find out who nominated each of the current CFSAC members. I just posted the results on my blog, and I hope you will read the full post and comment there.

Very interesting - thanks for doing all that work. The lack of knowledge of CFSAC members at the last meeting was a big shock to me - your detailed blog post helps explain why. Too much of that meeting was spent with them trying to catch up to a point where useful discussion could begin.

Are you going to bring this up at the meeting?
 

Seven7

Seven
Messages
3,444
Location
USA
Can we ask more of the big names to sit in? Maybe we as a group/ or the advocate group can send letters to the dedicated institutions like Simarron, WPI, PANU, Standford..... To see if they can nominate representatives!!!!
 

jspotila

Senior Member
Messages
1,099
Very interesting - thanks for doing all that work. The lack of knowledge of CFSAC members at the last meeting was a big shock to me - your detailed blog post helps explain why. Too much of that meeting was spent with them trying to catch up to a point where useful discussion could begin.

Are you going to bring this up at the meeting?
No, my testimony will be focused on the lack of measurable progress and the resulting frustration and despair we feel.
 

jspotila

Senior Member
Messages
1,099
Can we ask more of the big names to sit in? Maybe we as a group/ or the advocate group can send letters to the dedicated institutions like Simarron, WPI, PANU, Standford..... To see if they can nominate representatives!!!!
Anyone can submit a nomination. The Committee publishes calls for nominations every couple years, and anyone can submit. Both the CFIDS Association and PANDORA have submitted multiple names in the last few rounds, including nominees from Simarron and WPI.
 

jspotila

Senior Member
Messages
1,099
Who votes on which nominees get in?
The Secretary for Health and Human Services approves the nominations. I suspect the process involves the DFO (Nancy Lee) reviewing all nominations submitted and probably making recommendations to Assistant Secretary Koh which then get approved by Secretary Sebelius.
 

SOC

Senior Member
Messages
7,849
In July, I filed a FOIA request to find out who nominated each of the current CFSAC members. I just posted the results on my blog, and I hope you will read the full post and comment there. Here is an excerpt from my post:

Thanks, Jenny, for your hard work digging these things out and bringing them to our attention -- especially since you are not feeling well.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I submitted a copy of my testimony on time, and got a "thank you" response. I wonder when they are going to tell us which time slot we are in.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I just sent the following:

Hello,

It would be very helpful if you confirmed our time slots for telephone testimony. Most of the people who testify by telephone are too sick to travel. Some are bed-ridden. They need to plan and make sure they are alert and ready when they receive their call from the CFSAC to testify. I sent a previous email asking that my time slot be verified. I have heard nothing in response. The meeting begins on Wednesday, leaving only one day left for you to send advance notice.

I was informed that this it the email address I should be contacting. When do you plan to verify the time slots?

Regards,

Andrew .......
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Does anyone know if they're having live streaming video this time? I didn't see anything about it on their website. I sent an e-mail asking, but haven't heard back yet.
 

Hope123

Senior Member
Messages
1,266
Does anyone know if they're having live streaming video this time? I didn't see anything about it on their website. I sent an e-mail asking, but haven't heard back yet.

CFSAC will be streamed online again this time, thanks to everyone who wrote, called, e-mailed the government about the need for this.

Here is the link to watch. There is nothing if you press play right now since the meeting will not be until Oct 3-4. I am also going to do a new post to attract more attention.

http://www.hhs.gov/live/
 
Messages
15,786
I'm pretty impressed with Dimitrakoff. Seems like he has a good scientific approach to creating cohorts, which is rather necessary if the CDC continues using their CFS definition. Also good focus on pointing out that they don't know what's going on, that they need to be able to admit that, and then starting from there they can try to figure things out.
 

Hope123

Senior Member
Messages
1,266
Dr. Maier is being a wall -- every year researchers ask for money and get nothing. In times when NIH was doing well, CFS recevied little funding; now they're using the budget again as an excuse.
 
Messages
15,786
I missed the intro ... who's the woman named "Susan" who keeps giving the bureaucratic answers? I don't see Howard Koh either.

And I was a little annoyed with the suggestion that ME patients/advocates/doctors get involved with the chronic pain committee or whatever. It's not about pain!

On the other hand, it was nice to see most people call it ME/CFS, though one serious researcher (Mary Ann Fletcher) kept saying "chronic fatigue" :p I also think some people (committee members?) at the end did a good job pressing the bureaucrat about funding.