who is going to CFSAC meeting Oct 12-14?

[Ruth]

Now that the CFSAC meeting has been officially announced in the Federal Register for Oct 12-14 (Oct 12 is a "science day" preceding the 2-day meeting, but is also open to the public), we need a thread to help those plan who might be able to attend and/or provide statements. Deadline for statements written or to be presented live at the meeting is Sept. 17. For those attending, some of us may want to try to share accommodations to save expenses. So I propose this thread since I do not see any other like it on the forums.

Note: If you want to read the announcement, go directly to the federal register site:
http://www.federalregister.gov/arti...e-chronic-fatigue-syndrome-advisory-committee

[the links--and even the dates on calendar for the CFSAC and for the XMRV workshop webcast--are incorrect on the NIH site, e.g., http://www.hhs.gov/advcomcfs/
Is this negligence or are they trying to confuse us?]

 

[Hope123]

Thanks for posting this. I think it's sort of ridiculous that it was just posted today and we are given only 10 days to respond -- even if we don't expect to go in person but just submit a written testimony. In the past a longer time window was given and a later date was given to submit written testimony. Do they seriously need 25 days to gather all submitted testimony together or is this a case of someone afraid of being deluged by letters/ requests?

 

[Ruth]

Yes, it does make you wonder, especially with the non-working links at the NIH site where I've been watching for the schedule for the past couple of weeks. But at least the non-working link at NIH tipped me off that it must have appeared in the Register and so I went there to look it up. I had called Wanda's office about three weeks ago to ask about the schedule and was told that by law they were only required to post in the federal register two weeks in advance of the meeting!!! That gives one a lot of time to make economical travel plans!!

 

[anncavan]

I plan on attending all 3 days. I think it's really important to note that on the Science Day it says it's not open to the public, but when you read further it only means that there is not time alloted for public comment. Science Day, in my mind, is the most important day of them all!

Anyone who is attending, please drop me a line. I'd love to meet some other forum members!

 

[Ruth]

Note that there are a couple of related threads over on Action Alerts and Advocacy, such as "SEPTEMBER 17 -- NEXT Friday -- Deadline to send...." and "Fact Checking for CFSAC Testimony"

 

[BEG]

Now that the CFSAC meeting has been officially announced in the Federal Register for Oct 12-14 (Oct 12 is a "science day" preceding the 2-day meeting, but is also open to the public), we need a thread to help those plan who might be able to attend and/or provide statements. Deadline for statements written or to be presented live at the meeting is Sept. 17. For those attending, some of us may want to try to share accommodations to save expenses. So I propose this thread since I do not see any other like it on the forums.

bumping . . .

 

[srmny]

Hi,

I got an email this afternoon from CFSAC@hhs.gov. I have a 5 minute speaking slot on Wednesday Oct. 13th at 5pm. I had submitted only a short statement since I did not have much time to write it but did not want to miss the deadline. I plan to revise/rewrite it and am hoping to pull together some ideas from other members of the forums.

I have emailed hhs.gov multiple times trying to determine how many speaking slots were available and if they were all filled. None of my questions were answered in the email I received from hhs.

I am hoping my health will allow me to attend the meeting. It is the only time we have an opportunity to remind researchers and doctors that this is a real illness affecting real people and we need real treatments from real doctors now - not 10 years from now. I will push myself to the limits, both physically and financially, to make it to the meeting.

I would appreciate any and all suggestions. I also hope anyone else who is attending the meeting and/or has been given a speaking slot will post to this thread.

srmny