Preparation for federal US CFSAC May meeting

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Hi all,

Just thought I'd let you know that I haven't heard back from Dr Jones (sent a week ago). This is unusual. Maybe it's because I'm Canadian. Here's a cc of what I sent should an American wish to email her the same questions.

I think one of the important things to remember is that the charter for the CFSAC expires in Sept 2010 (before the next meeting). And it has to be renewed by the committee before then.

Hello Dr. Jones,

Here we are getting ready for another CFSAC meeting. You did such a great job of running the Oct 2009 meeting, I look forward to another one under you and your team. I’m especially pleased that the meeting will again be broadcast over the Internet as a real-time streaming video and also be recorded and archived on the CFSAC Web site for viewers to watch at their convenience.

I hope that you can help me and others in the ME/CFS world prepare by:

a) Emailing me, with permission to share if possible, the list that was mentioned at the Oct 2009 CFSAC meeting of all past committee recommendations and to what extent they have been acted upon. If the list has been updated since then, even better.

b) Amending the agenda to extend the amount of time that people have to speak, especially those of us with ME/CFS, to 5 minutes as was previous practice.

c) Amending the agenda to include 3-5 questions from the public after each ex officio member's and other presentations.

d) Emailing me, with permission to share if possible, and/or posting a list on the CFSAC site http://www.hhs.gov/advcomcfs/ of the current members of the CFSAC, including who will be the Chair if that is known already. I noted on the CFSAC site that several members’ terms expired between the 2 meetings.

Morris Papernik, MD Glastonbury, CT
Term: 01/03/06 to 01/03/10

Kristine Healy, MPH, PA-C Chicago, IL
Term: 01/03/06 to 01/03/10

Rebecca Artman Middleburg, FL
Term: 01/03/06 to 01/03/10

Lucinda Bateman, MD, PC Salt Lake City, UT
Term: 01/03/06 to 01/03/10

And
Chair
James M. Oleske, MD, MPH, CIP Newark, NJ
Term: 01/03/06 TO 01/03/10

e) I noted in the meeting announcement that

i) “The Committee is most interested in receiving public comment on the CFSAC charter, which can be found at http://www.hhs.gov/advcomcfs/charter/index.html.”

Is there anything more that you can tell me about this, any issues in particular that the committee is exploring?

ii) the meeting this year will only be one day long, as opposed to the 2 days last October. There seems to be much more happening in the ME/CFS world, with commensurate steps that need to be taken. Can you tell me why the time available has decreased? If there is a sufficient number of the public who wish to attend and speak, will it be possible to add more time to the meeting?

f) And finally, I wonder if you have any idea of when the agenda will be ready and posted on the CFSAC site?


Thank you for any help you can offer,

Sincerely,

xxx
 

jspotila

Senior Member
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I think one of the important things to remember is that the charter for the CFSAC expires in Sept 2010 (before the next meeting). And it has to be renewed by the committee before then.
Yes, very important to remember the deadline for the charter renewal. It's also important to note that in the past, renewal of the CFSAC charter by the Department of Health and Human Services has been "routine" in the sense that it has always happened without much public fanfare. The CFIDS Association usually secures some Congressional letters to DHHS asking that the charter be renewed, and the charter is usually renewed at the last minute.

That's very interesting information that the new members have not been appointed, hence the one-day meeting. I was pretty sure appointments were hung up given all the healthcare reform swirl, but I am a little surprised the meeting is happening without them! I'm not sure that has ever happened before.

How many people have signed up for comment slots?