Next CFSAC meeting date has been announced for November 8, 2011

[Dolphin]

Protest

There's a protest planned - see:
http://forums.phoenixrising.me/content.php?498-CFS-CFSAC-PROTEST-On-Tap-For-Nov-8th-ME

 

[Nielk]

There's a protest planned - see:
http://forums.phoenixrising.me/content.php?498-CFS-CFSAC-PROTEST-On-Tap-For-Nov-8th-ME

What's your opinion about the venue and timing of this protest?

 

[Nielk]

The agenda for the meeting is up.

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_agenda.html

 

[Dx Revision Watch]

04 November 2011


CFSAC Meetings Page:
http://www.hhs.gov/advcomcfs/meetings/index.html


CFSAC November meeting Call-in Information and Meeting Agenda

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_callininfo.html

CFSAC Fall 2011 Meeting (November 8-9)

Audio Call-In Information

The Meeting of the Chronic Fatigue Advisory Committee will be available via
AUDIO Lines. The following call-in information will provide access to the
meeting via audio lines:

Please dial the participant dial-in number:
Participant Dial-In Number: (866) 395-4129

Please use the following passcodes for each day:
Passcodes:

Tuesday, November 8: 24756185
Wednesday, November 9: 24759937

Please note, each caller can press *0 at any time during the call to
contact the operator for support.

There will be an operator on the line to welcome you and each caller will
be asked their name and email address (this is not a requirement). You will
be placed into the conference.

During the lunch hour, callers may hold the line or choose to call back to
access the conference.

The CFSAC meeting will begin from 9:00 am - 5:30 pm Tuesday, November 8 and
9:00 am - 4:30 pm on Wednesday, November 9.

-------------------

November 8-9 2011 Meeting Agenda

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_agenda.html

CFSAC Fall 2011 Meeting (November 8-9)

Day One

Agenda - CFSAC Fall 2011 Meeting
November 8, 2011

9:00 am Call to Order
Opening Remarks
Christopher R. Snell
Chair, CFSAC

Roll Call, Housekeeping
Nancy C. Lee, M.D.
Designated Federal Officer

9:10 am International Classification of Diseases-Clinical Modification
(ICD-CM)
Donna Pickett, RHIA, MPH
National Center for Health Statistics

10:00 am Public Comment Public

11:15 am Break

11:30 am Welcome Statement from the Assistant Secretary for Health
Howard K. Koh, M.D., Ph.D

12:00 pm Agency Updates: AHRQ, CMS, FDA, HRSA
Ex Officio Members

1:00 pm Subcommittee Lunch Subcommittee Members

2:00 pm Public Comment Public

2:45 pmBreak

3:00 pm Future Interdisciplinary Research for CFS Utilizing a Variety of
Scientific Disciplines
Gailen Marshall, M.D., Ph.D.
Committee Discussion

4:00 pm Committee Discussion

Past CFSAC Recommendations Committee Members

5:00 pm Adjourn

--------------------

Day Two

Agenda - CFSAC Fall 2011 Meeting
November 9, 2011

9:00 am Call to Order
Opening Remarks
Christopher R. Snell
Chair, CFSAC

Roll Call, Housekeeping
Nancy C. Lee, M.D.
Designated Federal Officer

9:15 am HHS Office on Disability
Rosaly Correa-de-Araujo, M.D, M.Sc.,Ph.D
Deputy Director, HHS Office on Disability

10:00 am Centers for Disease Control and Prevention Webpage
Eileen Holderman
Nancy G. Klimas, M.D.
Ermias Belay, M.D.

10:30 am Break

10:45 am Agency Updates: CDC, SSA, NIH
Ex Officio Members

11:45 am Minimal Elements for Papers
Leonard A. Jason, Ph.D.

12:15 pmS ubcommittee Lunch
Subcommittee Members

1:15 pm Public Comment
Public

2:15 pm Break

2:30 pm Committee Discussion

Finalize Recommendations Committee Members

4:30 pm Adjourn

[ENDS]

 

[SpecialK82]

So glad to see discussion scheduled for 1/2 hour on the CDC website - hoping we see progress, if not, we need to keep the pressure on the CDC as this is the source most relied upon by doctors.

 

[Nielk]

I have been working on my testimony by phone. I am now at 5mins 35 secs. I can't reduce it more.
I know I have to take something out but, everything I have I feel is so essential.

 

[Andrew]

So glad to see discussion scheduled for 1/2 hour on the CDC website - hoping we see progress, if not, we need to keep the pressure on the CDC as this is the source most relied upon by doctors.

I agree. We need to keep the pressure on. Especially now that there is some openness to fix things.

I've been watching the CDC website since the last meeting, and noticed they did remove a lot of the very harmful biased stuff. But, there are still some serious problems. I hope I don't hear them say everything is fixed. It is not.

 

[Andrew]

I have been working on my testimony by phone. I am now at 5mins 35 secs. I can't reduce it more.
I know I have to take something out but, everything I have I feel is so essential.

Here's what I'd do.

1. I'd look to see if any of my points could be stated more simply and clearly with fewer bells and whistles.

2. I'd make a list of my points and rank them by order of importance. I'd remove the least important onces, knowing I can present them the next meeting. Otherwise, I'm stuck with a talk I can't deliver.

BTW, my goal was to get my talk down to 4 minutes and 30 seconds. That gave me some buffer so I didn't have to worry.

 

[Nielk]

Thanks Andrew for the good practical advice!

 

[SpecialK82]

I've been watching the CDC website since the last meeting, and noticed they did remove a lot of the very harmful biased stuff. But, there are still some serious problems. I hope I don't hear them say everything is fixed. It is not.

Thanks for telling us the CDC website changed, I haven't looked at it in the last few months, I haven't read it all yet, but I'm glad to see that it's going in the right direction - like you said, will they say it's finished?

On a side note - I'm glad to see that Nancy Klimas will be at the meeting (speaking about the website), I have been mourning her loss on the Committee.

 

[Andrew]

I thought Nancy Klimas was changed so she could be there on an ongoing way. Perhaps in some sort of different advisory position. Not sure, but I thought I heard something like that.

But as far as I know, this is Leonard Jason's last meeting. He has been a valuable patient advocate in those meetings. I'm very bad at organizing some sort of "thank you" activity, so I won't try. But maybe those who like what he has done can email him and thank him.

 

[SpecialK82]

Now that you mention it, maybe this meeting is both Klimas and Jason's last? My memory is foggy, I remember that they talked about their departure last meeting, but I guess this is it? I believe this is Dr Christopher Snell's last one as well.

Like you said we need thank you's for all of them.

 

[justinreilly]

I agree. We need to keep the pressure on. Especially now that there is some openness to fix things.

I've been watching the CDC website since the last meeting, and noticed they did remove a lot of the very harmful biased stuff. But, there are still some serious problems. I hope I don't hear them say everything is fixed. It is not.

thanks for keeping track of this. as you know we have to watch them like hawks. i looked thru the list they have on the status of past CFSAC recommendations and they fudge a lot with the status, ie they say things are 'completed' that they really didn't do anything on, so i wouldn't be surprised if they say the website changes are 'completed.' you're right we can't let them get away with that.

 

[Andrew]

I just looked at the roster, and it appears as though Snell, Klimas, and Jason will be active until 04/01/12. And I'm guessing that date is before the next meeting. So this would be their last. Too bad, considering that now there is finally some openness to listening to the committee.

http://www.hhs.gov/advcomcfs/roster/index.html

 

[Dx Revision Watch]

I thought Nancy Klimas was changed so she could be there on an ongoing way. Perhaps in some sort of different advisory position. Not sure, but I thought I heard something like that.

But as far as I know, this is Leonard Jason's last meeting. He has been a valuable patient advocate in those meetings. I'm very bad at organizing some sort of "thank you" activity, so I won't try. But maybe those who like what he has done can email him and thank him.

Yes, Lenny Jason has confirmed that his term comes to an end following this meeting.

Suzy

 

[frenchtulip]

Participant Call-In phone no. (866) 395-4129 So it is a toll-free no.--right?

 

[Dx Revision Watch]

Today, a message has been conveyed by a CFSAC Committee member to Martha Bond at HHS for clarification of whether audio streaming + Call in phone is being provided or solely Call in. Concerns for the implications of only phone line access are also being raised.

When I have a response from Ms Bond, via my contact, I'll report back.

Suzy

 

[Dx Revision Watch]

I have also contacted Martha Bond, today, for clarification.

Suzy

 

[Nielk]

I'm ready with my phone testimony for tomorrow around 2:15 pm.

 

[Dx Revision Watch]

I'm ready with my phone testimony for tomorrow around 2:15 pm.

Good luck, Nielk.

If it's not confirmed that there will be an audio stream, I won't be able to listen to you or the agenda item in which I have the most interest. Last meeting, I had a friend emailing me live updates on the progress and outcome of one of the agenda items which was great because I couldn't get the live audio/visual feed to buffer properly for Day One.

It still says on the CFSAC website in the Meeting Notice:

"There will be a live audio link to the two day meeting, which will allow listeners to hear the entire meeting in real time."


Let's hope that Ms Bond gets back to me, today.

Suzy