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Meeting Information

Project Title: Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

PIN: IOM-BSP-13-05         

Major Unit:
Institute of Medicine

Sub Unit:
Board on the Health of Select Populations

Mundaca, Carmen

Subject/Focus Area:
Health and Medicine

Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Committee Meeting 1
January 27, 2014 - January 28, 2014
Keck Center
500 5th Street, NW
Washington D.C. 20001

If you would like to attend the sessions of this meeting that are open
to the public or need more information please contact:

Contact Name: IOM MECFS Study
Phone: 202-334-3169
Fax: 202-334-2685


Public Information-Gathering Session
January 27, 2014
Keck Building
Room 100
500 5th Street NW
Washington, DC

1:00 – 1:15pm Introduction to Public Session
Ellen Wright Clayton, Committee Chair

1:15 – 2:00pm Background and Charge to the Committee
Nancy C. Lee, M.D., Designated Federal Officer for the Chronic Fatigue Syndrome Advisory Committee (CFSAC); Deputy Assistant Secretary for Health - Women's Health and the Director of the Office on Women's Health (OWH) in the Office of the Secretary, U.S. Department of Health and Human Services

Q and A from Committee

2:00 – 2:30pm Methodology for the CDC Multi-site Clinical Study
Elizabeth Unger, Chief of the Chronic Viral Diseases Branch (CVDB), Centers for Disease Control and Prevention

2:30 – 3:00pm NIH Evidence-Based Methodology Workshop
Susan Maier, Deputy Director, Office of Research on Women’s Health (ORWH), U.S. Department of Health & Human Services

3:00 – 3:15 pm Break

3:15 – 3:45pm The Voice of the Patient Report
Sara Eggers, Office of Program and Strategic Analysis/Office of Strategic Programs, Center for Drug Evaluation and Research, U.S. Food and Drug Administration

3:45 – 4:45pm Remarks from ME/CFS Advocates and Associations
Lori Chapo-Kroger, PANDORA Org

Mary Schweitzer, Wisconsin ME/CFS Association, Inc.

Carol Head, CFIDS Association of America

Pat LaRosa, New Jersey Chronic Fatigue Syndrome Association, Inc.

Adin Burroughs, Phoenix Rising

Charmian Proskauer, Massachusetts CFIDS/ME & FM Association

Jennie Spotila, OccupyCFS

4:45 – 5:30pm Public Comment Session (15 slots of 3 minutes each)

5:30pm Adjournment of Public Session
Ellen Wright Clayton, Committee Chair

Closed Session Summary Posted After the Meeting

The following committee members were present at the closed sessions of the meeting:
1. Ellen Clayton (chair)
2. Lucinda Bateman
3. Lily Chu
4. Charles Cleeland
5. Ronald Davis
6. Betty Diamond
7. Theodore Ganiats
8. Betsy Keller
9. Nancy Klimas
10. A. Martin Lerner
11. Cynthia Mulrow
12. Peter Rowe

The following topics were discussed in the closed sessions:
1. National Academies policies, procedures, and study process
2. Bias and conflict of interest discussion
3. The committee's composition and balance, including public feedback
4. Scope of study, Statement of Task, and initial work plan

The following materials (written documents) were made available to the committee in the closed sessions:
1. Meeting agenda
2. Committee roster
3. Study timeline
4. Statement of Task
5. Relevant literature
6. Briefing materials
7. Public comments received via email through 01/22/14

Date of posting of Closed Session Summary: February 3, 2014