CFSAC Meeting Needs to be Rescheduled for a Two Full Day In-Person Meeting

[Hope123]

This is a last minute change partly in response to patients and advocates communicating with CFSAC staff about the confusing registration process for CFSAC this time and the short time (8 days) people had to submit comments or register to watch. The meeting is 2 days - Tuesday and Wednesday (12/10 and 12/11) and is from 12PM - 5PM Eastern Standard Time (Washington DC).

To convert times/ days: http://www.timeanddate.com/worldclock/converter.html

As for NOW, ANYONE can watch the meeting from anywhere even if you did NOT register for the meeting.

Instructions in link; please test your computer per instructions below pre-meeting:

http://blsmeetings.net/CFSACdec2013/webinarinformation.cfm

Agenda: http://blsmeetings.net/CFSACdec2013/documents/agenda.pdf

To submit questions during the meeting, from CFSAC staff directly:

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<mailto:CFSACDec2013@seamoncorporation.com>.
The Committee Chair will select questions and moderate answers from the
committee beginning at 2:15pm on December 11.

________________________________________________________

 

[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 on the plan for 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

 

[Denise]

re CFSAC public comment 11 Dec 2013 ( posted 10 December 2013, 11:19am eastern time)

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


Thanks,

Denise
(Feel free to respond here or PM me)

 

[readyforlife]

CFSAC Dec2013 <CFSACDec2013@seamoncorporation.com>
6:20 AM (3 hours ago)

to CFSAC

Greetings:
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
We regret that this has happened. We hope to be on the webinar with you tomorrow!

 

[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,

 

[Hope123]

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.

Good letter, Nielk.

 

[jspotila]

Anyone who was scheduled to give public comment today, or who was unable to get a comment slot, I am happy to host your comment on my blog. Email me for details jspotila AT yahoo DOT com.

 

[Nielk]

If you will be sending 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.

 

[liquid sky]

How convenient!

 

[Jeannette Burmeister]

http://thoughtsaboutme.com/2013/12/...heduled-for-a-two-full-day-in-person-meeting/

Condensing the meeting down even further than what was already planned is completely unacceptable. In the past (until May of this year), we had two 9 to 5 meetings, a total of 16 hours. If CFSAC indeed proceeds with condensing it into just tomorrow, that would be 5 hours only, less than one third of the normal duration of the meeting? This is completely unacceptable. It’s outrageous. Clearly, Dr. Lee has to reschedule the entire meeting if HHS doesn’t want to be even more blatant about the fact that it is literally impossible for the government to care any less about this patient population, which is already so painfully obvious. I know the government is trying to burry us with the IOM “study,” but let’s attempt to rescue an iota of pretense, shall we?!

If HHS wants to avoid appearing as egregiously disenfranchising patients more and more at mind-blowing, accelerating speed, it has no choice than to reschedule the entire meeting and to return to its prior format: a two-day in-person meeting.

Please everybody write to Nancy Lee requesting this with CCs to Sebelius, Koh and Jones:

Nancy.Lee@hhs.gov
Kathleen.Sebelius@hhs.gov
howard.koh@hhs.gov
Wanda.Jones@hhs.gov

 

[jspotila]

I completely agree! http://www.occupycfs.com/2013/12/10/my-request-to-dr-lee/

Here's the email I sent to Dr. Lee, copying Dr. Jones:

Dr. Lee,

I know the government is closed today, and you may not be working. But I must appeal to you regarding the OWH decision to condense the two half-day CFSAC meetings into a single half-day. The list of mistakes, incompetence, and blatant misstatements related to the planning of this meeting was already long, too long for me to list here. But this latest decision disenfranchises all the patients scheduled to speak today, and will undoubtedly materially impair the Committee’s ability to discuss and consider the issues on the agenda.

OWH has an opportunity here to make a decision that will be welcomed by the advocacy community. OWH has a chance to do the right thing, and demonstrate respect for both ME/CFS patients and the gravity of the Committee’s work. Or OWH can barrel ahead with this ridiculous farce of a half-day session, and reap the criticism that will undoubtedly follow.

Please postpone this meeting. Take the time to properly plan the meeting, with all the appropriate public notice and comment requirements, and hold it in January.

Sincerely,
Jennifer Spotila

 

[barbc56]

So all they need to do is reschedule the two days! While this may be difficult, it's the least they can do.

Edit. I woulr rather wait for two days, within a reasonable time period.

 

[Ember]

Here is another kicker: Even tomorrow’s public comments are cut from 5 minutes to 3 minutes. http://thoughtsaboutme.com/2013/12/...heduled-for-a-two-full-day-in-person-meeting/

Shades of the May CFSAC meeting:

Dr. Lee: We are now actively pursuing methods to address the clinical research definition part. I think we should not discuss this anymore because I don’t want to take up the rest of the day....

Dr. Marshall: We’re going to spend five more minutes on this discussion and then we’re going to move on....

Ms. Holderman: This has been a very big point of contention in our subcommittees and on this advisory committee. I don’t want to sweep it under the carpet and give it three minutes. It deserves much more than that.

Dr. Marshall: I’m sorry, you’ve got two minutes now.

 

[Sushi]

Note: 3 threads on this subject have been merged into this thread.

 

[Nielk]

Jennie Spotila posted Gabby Klein's testimony on her blog OccupyCFS
http://www.occupycfs.com/2013/12/10/gabby-klein-cfsac-testimony-december-2013

 

[Andrew]

I'm afraid that if we don't have it now, this will just drag on until it's time for the next meeting. It was already postponed once.

 

[WillowJ]

Maybe we could ask for a third meeting in Calendar Year 2014, in addition to the brief one tomorrow.

 

[Nielk]

Revised agenda for tomorrow's CFSAC meeting.
https://www.facebook.com/CFIDSAssn/posts/10151914295127108

As of now, it appears the CFSAC meeting will take place tomorrow, though with a shortened and revised agenda. They are looking into plans for another meeting in January to make up for the lost time on this one.

As always, ALL are welcome to join in. Log in information is in the comments.

(Eastern Standard Time)

12:00PM Call to order, Roll Call (including introduction of new members, Housekeeping , Welcomes, opening remarks)
12:20PM IOM Report
12:50PM Agency Updates (NIH, CDC)
1:10PM Public Comments
1:45PM Break
2:00PM CFS Liaison Member reports
2:15PM Education and Patient Care subcommittee and CDC website Committee report
2:30PM ME/CFS Researcher and Clinician-Scientist Recruitment Workgroup Report
3:00PM Education for ME/CFS Working Group Report
3:30PM Committee discussion re: working groups and any recommendations
4:55PM Closing remarks
5:00PM adjourn

 

[justinreilly]

Maybe we could ask for a third meeting in Calendar Year 2014, in addition to the brief one tomorrow.

or maybe 5 over next 2 years.