November CFSAC meeting MOVED to December

[Hope123]

Got this from CFSAC:; if you want to receive updates, sign up for the CFSAC listserv on the last line.

*************************************************************************************************************

Due to the shutdown of the federal government, the next CFSAC meeting is being postponed until December 10-11, 2013 from 12:00 p.m. to 5:00 p.m. (EDT). The agenda will be posted on the CFSAC website no later than November 15, 2013.

We now have the capacity to accept pre-recorded video testimony for public comment and will continue to schedule public comment via phone and accept written submissions. The Federal Register Notice will be posted no later than November 18 and include detailed instructions for joining the webinar and requesting public comment. Information will also be posted on the CFSAC website at www.hhs.gov/advcomcfs.

Please know that we value your involvement and regret any inconvenience that this delay may have caused you. Thank you for your patience as we work through this challenging time.

Thank you,
CFSAC Support Team



The CFSAC Support Team
http://www.hhs.gov/advcomcfs/index.html


Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
http://www.hhs.gov/advcomcfs/cfsac_email_list.html

 

[Nielk]

It gives us a little more time to prepare. Is anyone planning to send in a video? Any ideas for this?

 

[Bob]

We now have the capacity to accept pre-recorded video testimony for public comment and will continue to schedule public comment via phone and accept written submissions.

Would the CFSAC meeting be an appropriate forum to submit testimony as to why we believe the IOM process is flawed?

 

[Nielk]

Would the CFSAC meeting be an appropriate forum to submit testimony as to why we believe the IOM process is flawed?

It certainly is!

In their Statement of Work, HHS states:

We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month. This study grew out of the 2012 CFSAC recommendation to the Secretary to convene a workshop to “reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS.” Because the use of and audience for case definitions for research and clinical care are very different, HHS decided that separate processes were needed to develop them. The NIH is convening an Evidence-based Methodology Workshop process that will consider case definitions appropriate for
ME/CFS research and the IOM will address the clinical diagnostic portion of the recommendation.


Since HHS claims that the IOM contract grew out of CFSAC's recommendation to the Secretary, it is definitely the platform that we can use to voice our opinions.

 

[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,