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Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10.

Cover of Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.

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APublic Session Agendas1

  • 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
 
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 PMPublic 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

Footnotes

1

Presentation materials available by request through the National Academies Public Access Records Office, (202) 334-3543 or paro@nas.edu.

Copyright 2015 by the National Academy of Sciences. All rights reserved.
Bookshelf ID: NBK284906
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