CFSAC 2013 - REGISTER to watch the proceedings live (10-11 December)

[Bob]

On this occasion, registration is necessary in order to view the meeting live online.

According to the CFSAC website, it is necessary to register this week, by Friday 29th Nov 2013, in order to watch the Dec 2013 CFSAC proceedings live online.

To register, go to this webpage, and click on 'registration' on the left-hand-side list of options:
https://www.blsmeetings.net/CFSACdec2013/index.cfm?

The meeting is on 10-11 December (Tues & Wed), from midday to 5pm (EST) on each day.

 

[Bob]

Adobe Connect must be installed on your browser in order to view the meeting live.

To test your computer for Adobe Connect, and to install it, go to this link:
http://admin.adobeconnect.com/common/help/en/support/meeting_test.htm

 

[Bob]

CFSAC FAQs:
https://www.blsmeetings.net/CFSACdec2013/documents/faqs.pdf

 

[Bob]

During the registration process, if you chose to be anonymous (i.e. tick/check the anonymous option), then it doesn't seem to require your email address, so perhaps it will be possible to watch the event anonymously without registration. Unless it's a bug.

 

[Firestormm]

Have you got to register in advance, Bob, and do you know if it might be recorded so I can watch it later if unable to on the day? Thanks

 

[Bob]

Have you got to register in advance, Bob, and do you know if it might be recorded so I can watch it later if unable to on the day? Thanks

My guess is that if you want to watch it live anonymously, then advance registration isn't necessary.
But it's only a guess. I've sent them an email for clarification.

They usually post the videos online after the event, but I haven't read anything about it for this meeting.

 

[Bob]

I've received an email from them, and it seems that it is necessary to pre-register in order to watch the proceedings.
The option to register anonymously should not actually be there purely for watching the proceeding; its an error in their system.
The 'anonymous' option should only be there for submitting evidence.

To clarify, for watching only, do not select the 'anonymous' option in order to register or it won't register you.
That's my understanding anyway.

 

[Firestormm]

Registration
Thank you for your interest in the CFSAC webinar. Pre-registration for the webinar is now closed. Please contact us at CFSACDec2013@seamoncorporation.com if you have any questions.

Not that I am too bothered. I am sure I'll hear all about it

 

[Bob]

It seems that registration is no longer required (if it ever actually was) for those who wish only to watch the proceedings.

"All are welcome to participate, regardless of registration status."

The meeting will be accessible to the general public EVEN IF YOU DID NOT REGISTER.

This is a last minute change by HHS. The full instructions can be found here:
http://blsmeetings.net/CFSACdec2013/webinarinformation.cfm

Webinar Access:
Adobe Connect URL: http://hhs.adobeconnect.com/owhcfsac/

Access to the Audio Portion of the Webinar:
Conference Call Number: 877-918-6627 | Passcode: 4429527

Please share this information as widely as possible.

It seems that questions (not comments) can be submitted for consideration by anyone during the proceedings, and some will be selected to be answered:

There will be an opportunity to ask questions (no comments) about topics being discussed during the webinar by sending an email to
CFSACDec2013@seamoncorporation.com

The Committee Chair will select questions and moderate answers from the committee beginning at 2:15pm on December 11.

Related forum thread:
http://forums.phoenixrising.me/index.php?threads/cfsac-comment-due-november-29th.26619/

 

[Nielk]

CAA just posted on twitter:

IMPORTANT: today's CFSAC meeting has been canceled due to the winter storm/snow closing all federal offices. For now, tomorrow's session is still planned. Stay tuned; we will keep you posted.

 

[jspotila]

Nancy Lee has provided an update regarding tomorrow's meeting, including important changes to public comment:

Because of a snow storm in the Washington DC area, the Federal Office of Personnel Management has closed all federal govt. offices in DC. This includes the tech support we need for webinars.

Unfortunately, we cannot have the webinar today. Additionally, we cannot get the CFSAC website updated today.

We will have the webinar tomorrow (Wed. Dec. 11) beginning at noon ET, IF govt. offices are open. Dr Gailen Marshall, the CFSAC Chair, will work with the committee members at the beginning of the webinar to modify the agenda to accommodate the compressed timeframe.

We will have public comment tomorrow for those who were scheduled to speak on Wed. Unfortunately, we won’t be able to accommodate the public comments that were scheduled for Tuesday because we cannot confirm with the speakers that they are available for the Wednesday time slot.

So that we have more time for the Committee to deliberate and discuss, we ask those providing public comment tomorrow to limit their speaking time to 3 minutes.

If we must cancel the webinar tomorrow (DC doesn’t handle snowy, icy roads well), we will reschedule the CFSAC meeting webinar to occur after the first of the year.

More info on government closure in DC at www.OPM.gov

 

[Firestormm]

You'd think in this day and age there would be a means to hold virtual conferences wouldn't you? Oh wait. There is!

Jeepers I never understand why face-to-face meetings are so very necessary. Then again I suppose in this instance if the IT staff can't get in to the office...

Maybe there's a lesson or two to be learned here.

 

[Denise]

re CFSAC public comment 11 Dec 2013

If you are scheduled to give public comment on Wednesday 11 December 2013,
please let me know as soon as possible.


Thanks,
Denise

 

[Nielk]

Many patients and advocates are upset with the fact that HHS will not replace the meeting to a two day format at another time.

If you want to voice your concern, you can e-mail Nancy Lee at Nancy.Lee@hhs.gov

This is the e-mail that I just sent out.

Dear Dr. Lee,

I understand that due to weather issues in D.C. today, HHS was closed which forced you to cancel today's webinar meeting. I am very concerned though with the fact that you are trying to shrink two days into one.

It was bad enough that we did not have the availability of a live meeting as we usually do. Then, the agenda was shrunk from two full days to two half day.

Now all we are left with is one half a day webinar meeting.

For a group of patients who already feel ignored and marginalized, this does not give a feeling of confidence that HHS is concerned about us. Especially at this most important juncture of HHS contracting with the IOM to redefine ME/CFS and all the unanswered questions regarding this action, I feel that this is a great mistake.

I urge you to reschedule a full two day meeting with appropriate time for deliberation about important issues effecting ME/CFS patients.

Thank you for your consideration,

 

[Nielk]

If you send an e-mail to Nancy Lee please copy in the following: Katheleen.Sebelius@hhs.gov, Howard.Koh@hhs.gov, Wanda.Jones@hhs.gov.

Thank you.