Posts Tagged 'spring 2012'

Minutes, public comment (and videos) of the June 13/14 2012 CFSAC meeting now available online


The minutes and public comment from the meeting of the Chronic Fatigue Syndrome Advisory Committee,  June 13 – 14, 2012 are now available on the CFSAC website at

Videos of the June 13/14 2012 CFSAC meeting:

REMINDER – the next CFSAC meeting is October 3rd and 4th, 2012.

The meeting will be held at the Hubert Humphrey Bldg, Room 800, 200 Independence Ave. Washington DC. 


videos of the June 13/14 2012 CFSAC meeting are now online

The videos are available to view.

Thank you

Thank you to everyone who has helped and supported Speak Up About ME. We appreciate you!

Thank you to everyone who participated in/watched the June 2012 CFSAC meeting.

Thank you to each of you who make a difference each day in the lives of people with ME/CFS!


Viewing numbers matter! WATCH the CFSAC live!

WATCH the CFSAC live!

Viewing numbers count –

Watch/tune in to the CFSAC live to make sure that we continue to have this way to participate in the proceedings as they happen.

According to the CFSAC website,

“On June 13-14, 2012, the meeting will provide a live video stream at  Passcode: CFSAC 2012 ”

Hours both days are 9 AM -5PM (eastern time)

Thank you!


Available as audio (only) at 1-888-677-1834.


Speak Up About ME will be among the participants in  the CFSAC meeting. Look for us!

Registration and Public Comment Sign up Instructions for 2012 CFSAC Spring Meeting

New procedure and registration format!  

As with most new procedures there seem to be a few glitches and questions about the procedures. As we get answers, we will do our best to update this information.

PLEASE NOTE – there are TWO registration forms.

One is for attendance (this is new and there is no option – at present – to indicate if one is attending both days or one day only).

The other registration form is for public comment. There is an option here for stating the preferred date one wants to give public comment, but no guarantees of it.

“CFSAC Registration

Public attendance is welcome, but due to limited space advance registration is required. Individuals who plan to attend should register at the following link by Friday, June 8, 2012  Members of the media will also need to register.

All attendees will be required to show government-issued picture identification for entry into the federal building.  Attendees will receive a wrist band that must be worn the entire time. Security requires all non-federal employees to be escorted the entire time they are in the building. Upon leaving the building for any reason all persons will be required to follow the security steps mentioned above and receive a new wrist band. Members of the public will have the opportunity to provide public comments at the meeting or via telephone. International calls cannot be accommodated.

Public Comment Sign Up

A separate sign-up process for requesting time for public comment must be completed by Wednesday, June 6, 2012 at the following link:

Individuals wishing to provide public comment must also submit an electronic copy of their testimony in advance to: by Wednesday, June 6, 2012.  We require that you email a document (5 pages or less) in MS WORD format that is single-spaced, 12-point font.

Note:  PDF files, hand-written notes and photographs will not be accepted.  Requests for public comment and written testimony will not be accepted through the CFSAC mailbox. Also, the CFSAC mailbox will not respond to questions about specific public comment requests.

All public comment becomes part of the public record, available for viewing and posted on the CFSAC website.  All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC website and made available for public inspection. Testimony and materials submitted should not include sensitive personal information, such as social security number, birthdates, driver’s license number, state identification or foreign country equivalent, passport number, financial account number, or credit or debit card number.  Sensitive health information, or non-public corporate or trade association information, such as trade secrets or other proprietary information should be excluded from any materials submitted. If you wish to remain anonymous the document must specify this.

We will confirm your time for public comment via email by Monday, June 11, 2012. Each speaker will be limited to five minutes per speaker; no exceptions will be made.  We will give priority to individuals who have not provided public comment within the previous year.

 Persons who wish to distribute printed materials to CFSAC members should submit one copy to Designated Federal Officer at, prior to Wednesday, June 6, 2012.  Submissions are limited to 5 typewritten pages. ”                



Reminder – The Empty Chair Project* for June 2012 CFSAC meeting

Photos, reasons and release forms are needed by May 29th !!!


Photo(s) (jpeg format) suitable for 8×10 inch print (photos can be current, prior to illness, both, silhouette, etc.)

Reason(s) the individual cannot be at the CFSAC

Signed release form *

to SpeakUpAboutME at gmail dot com

Family members/friends, etc. can also be part of The Empty Chair Project, if they would like to participate in the CFSAC, but cannot be there and the reasons they can’t be there. (for example – can’t afford to take additional time off from work, can’t afford the expenses and so on.)

Are you providing public comment remotely (via DVD/phone)? – send your photo. Someone will sit at the table and hold up your photo during your public comment. (Connecting a face with the public comment provides huge visual impact.)

If your name cannot/should not be used, please provide a nickname.

Each participant must submit a completed and signed release form (in part, so that the CFSAC will allow us to display the photo).

* Request release form from SpeakUpAboutME at gmail dot com.

(We need photos, reasons and forms by May 29th in order to get photos printed and assembled.)

*PANDORA originated The Empty Chair Project. We thank them for letting us revive it.

The next Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting will take place on Wednesday, June 13th and Thursday, June 14th, 2012

“The Chronic Fatigue Syndrome Advisory Committee (CFSAC), 2012 spring meeting will be held on Wednesday, June 13, 2012 from 9:00 a.m. until 5:00 p.m. EST and Thursday, June 14, 2012 from 9:00 a.m. until 5:00 p.m. EST.

The meeting will be held at the U.S.  Department of Health and Human Services, Hubert Humphrey Building, 200 Independence Avenue, S.W., Room 800,  Washington, D.C. 20201.  For directions please visit

The meeting will be webcast live [YES, THIS IS LIVESTREAM AGAIN!!!] and [option] available by audio (listening-only). Additional information and the CFSAC agenda will be posted to the CFSAC website by June 4, 2012.”

Under federal regulations, notice must be given seven calendar days prior to the meeting.

Many of us have repeatedly stressed to the DHHS and to the CFSAC that because the ME/CFS community is comprised of many people with severe disabilities, we need and deserve much more notice in order to make arrangements to participate.

We have gotten about seven weeks(!) notice.

This will help those of us who can participate in person and everyone who will be participating via public comment.

Have you written your public comment yet?

Please note – registration for attendance and public comment is not yet open.