Nielk
Senior Member
- Messages
- 6,970
I signed up to testify by phone. Too sick to get there in person . . .
Thank you jspotila for testifying. I know it's not easy to do..especially when so sick. I appreciate it.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
I signed up to testify by phone. Too sick to get there in person . . .
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.
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:
No, my testimony will be focused on the lack of measurable progress and the resulting frustration and despair we feel.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?
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.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!!!!
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.Who votes on which nominees get in?
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:
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 .......
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.
Thanks, that's what I was looking for.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/
Yep, Eastern time.I was just looking at the agenda. Can we assume those times are Eastern Daylight Time???