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Suggested Citation:"Appendix A: Public Session Agendas." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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A


Public Session Agendas
1

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

 

____________________

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

Suggested Citation:"Appendix A: Public Session Agendas." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×
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

 
Suggested Citation:"Appendix A: Public Session Agendas." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×
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

Suggested Citation:"Appendix A: Public Session Agendas." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

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Suggested Citation:"Appendix A: Public Session Agendas." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×
Page249
Suggested Citation:"Appendix A: Public Session Agendas." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×
Page250
Suggested Citation:"Appendix A: Public Session Agendas." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×
Page251
Suggested Citation:"Appendix A: Public Session Agendas." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×
Page252
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Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological - rather than psychological - nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness - systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical - not a psychiatric or psychological - illness. This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report's most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.

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