June 2014 Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting

2014 Spring Meeting of the CFSAChhslogo
June 16 and 17, 2014
Noon -5pm ET on Monday June 16  |  9am – 5pm ET on June 17

Hubert H. Humphrey Building, 200 Independence Ave. SW, Washington, DC

A draft version of the agenda is below.  Once the agenda is finalized, it will be posted on the CFSAC website, http://www.hhs.gov/advcomcfs/  .
The Federal Register Notice is posted here:

The meeting will be live-video streamed at http://www.hhs.gov/live.  Listening-only via telephone will be available on both days.  Call-in information will be posted on the CFSAC website prior to the meeting.  

Individuals who plan to attend in­ person should register at http://www.blsmeetings.net/CFSAC.  All registration should be completed by June 12, 2014.  Attendance by visitors who are not U.S. citizens is welcome, but prior approval is required by sending a request to CFSAC@seamoncorporation.com  before June 5, 2014. Members of the media will also need to register.  

All attendees will be required to show valid, government-issued picture identification (state or federal) for entry into the federal  building.  

Members of the public will have the opportunity to provide public comment at the meeting or via telephone.  International calls cannot be accommodated.  Individuals wishing to provide public comment in-person or via phone will be required to request time for public comment by Monday, June 9, 2014 at the following link: http://www.blsmeetings.net/CFSAC.  An email to acknowledge receipt of the request for public comment will be sent from CFSAC@seamoncorporaton.com.  Another email will be sent by June 12, 2014 to confirm the individuals’ time for public comment. 

Individuals wishing to submit written comment for the public record should send an electronic copy of their written testimony to: CFSAC@seamoncorporation.com by June 12, 2014.  The document for the public record cannot exceed 5 single-spaced, typed pages, using a 12-point typeface; it is preferred that the document be prepared in the MS Word format.  Additional requirements will be available on the Federal Register Notice.

Requests to participate in the public comment session and provide written testimony will not be accepted through the CFSAC email account. Please send all questions about specific public comment requests or inquiries to CFSAC@seamoncorporation.com .

Persons who wish to distribute printed materials in person to CFSAC members should submit one copy to the Designated Federal Officer at cfsac@hhs.gov, prior to June 12, 2014.

DRAFT Agenda

CFSAC Meeting  |  12:00 p.m. to 5:00 p.m. (ET)  |  June 16, 2014 

12: 00 p.m. Call to OrderRoll Call Nancy C. Lee, M.D.Acting ChairDesignated Federal Officer (DFO)
12:10 p.m. Logistics                                                       Nancy C. Lee, M.D., Acting ChairDesignated Federal Officer (DFO)
12:15 p.m. Opening RemarksRequest Approval – CFSAC Minutes March 11, 2014  
12:30 p.m. Agency Updates CDC, AHRQ, NIH
1:30 p.m. Public Comment Public
2:30 p.m. Break
2:45 p.m. ME/CFS Researcher and Clinician-Scientist Recruitment Workgroup Workgroup Members
3:45 p.m. Committee Discussion Committee members
5:00 p.m. Adjourn  

9:00 a.m. to 5:00 p.m. (ET)  |  June 17, 2014 

9:00 a.m. Call to OrderRoll Call (c-list below) Nancy C. Lee, M.D., Acting ChairDesignated Federal Officer
9:15 a.m. Logistics Nancy C. Lee, M.D.Acting ChairDesignated Federal Officer (DFO)
9:30 a.m. Agency Updates CMS/FDA/HRSA/SSA
10:30 a.m. Break  
10:45 a.m. Public Comment Public
11:45 a.m. Lunch  
1:00 p.m. Patients Registry Models
Autism Patient RegistryNational Database for Autism ResearchPatients Like Me
Beth A. Collins Sharp, Ph.D., R.N.
Dan Hall, Program Manager
2:00 p.m. Future DirectionsPost IOM Report ReleaseModel: Follow up of an IOM Report   “Epilepsy Across the Spectrum” Nancy C. Lee, M.D.Designated Federal Officer (DFO)Margaret Jacobs, Science Community Liaison
American Epilepsy Society

Committee Discussion

3:15 p.m. Break  
3:30 p.m. Future Directions
Committee Discussion
Committee members
4:15 p.m. Future DirectionsAudience Open ForumComments and Questions Persons in attendance
5:00 p.m. Adjourn  


Additional information and a detailed agenda will be posted soon at http://www.hhs.gov/advcomcfs/index.html 


The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS).

Administrative and management support for CFSAC is provided by the HHS Office on Women’s Health in the Office of the Assistant Secretary for Health (OASH). Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.