Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness (2015)
Chapter: Appendix A: Public Session Agendas
January 27, 2014
Keck Center of The National Academies
500 Fifth Street, NW, Room 100
Washington, DC
| 1:00-1:15 PM |
Introduction to Public Session Ellen Wright Clayton, Committee Chair |
| 1:15-2:00 PM |
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 Director of the Office on Women’s Health (OWH) in the Office of the Secretary, Department of Health and Human Services Q and A from Committee |
| 2:00-2:30 PM |
Methodology for the CDC Multi-Site Clinical Study Elizabeth Unger, Chief of the Chronic Viral Diseases Branch (CVDB), Centers for Disease Control and Prevention |
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1 Presentation materials available by request through the National Academies Public Access Records Office, (202) 334-3543 or paro@nas.edu.
| 2:30-3:00 PM |
NIH/Office of Disease Prevention (ODP) Pathways to Prevention Workshop: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Susan Maier, Deputy Director, Office of Research on Women’s Health (ORWH), Department of Health and Human Services |
| 3:00-3:15 PM | Break |
| 3:15-3:45 PM |
The Voice of the Patient Report Sara Eggers, Office of Program and Strategic Analysis/Office of Strategic Programs, Center for Drug Evaluation and Research, Food and Drug Administration |
| 3:45-4:45 PM |
Remarks from ME/CFS Advocates and Associations Adin Burroughs, Phoenix Rising Lori Chapo-Kroger, PANDORA Carol Head, CFIDS Association of America Pat LaRosa, New Jersey Chronic Fatigue Syndrome Association, Inc. Charmian Proskauer, Massachusetts CFIDS/ME & FM Association Mary Schweitzer, Wisconsin ME/CFS Association, Inc. Jennie Spotila, OccupyCFS |
| 4:45-5:30 PM | Public Comment Session (15 slots of 3 minutes each) |
| 5:30 PM |
Adjournment of Public Session Ellen Wright Clayton, Committee Chair |
May 5, 2014
National Academy of Sciences Building
2101 Constitution Avenue, NW, Room 120
Washington, DC
| 1:00-1:15 PM |
Introduction to Public Session Ellen Wright Clayton, Committee Chair |
| 1:15-2:45 PM |
Patient and Advocate Panel: Challenges Faced by ME/CFS Patients When Interacting with the Health Care System Joseph Landson Denise and Matthew Lopez-Majano Robert Miller Annette Whittemore |
| 2:45-3:15 PM | Q and A from Committee |
| 3:15-3:30 PM | Break |
| 3:30-4:00 PM |
Diagnostic Criteria Issues for ME/CFS Leonard A. Jason, Professor, DePaul University, Director of the Center for Community Research |
| 4:00-4:10 PM | Q and A from Committee |
| 4:10-4:40 PM |
Sleep Disturbances in ME/CFS Akifumi Kishi, Postdoctoral Fellow in the Division of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, New York University School of Medicine |
| 4:40-4:50 PM | Q and A from Committee |
| 4:50-5:20 PM |
Neurocognitive Manifestations in ME/CFS Gudrun Lange, Professor, Department of Physical Medicine and Rehabilitation, Rutgers University-New Jersey Medical School |
| 5:20-5:30 PM | Q and A from Committee |
| 5:30 PM |
Adjournment of Public Session Ellen Wright Clayton, Committee Chair |
