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Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Pathways to Prevention. December 9-10, 2014

Tuesday, December 9, 2014

8:30 a.m. Opening Remarks
James M. Anderson, M.D., Ph.D.
Director
Division of Program Coordination, Planning, and Strategic Initiatives
Office of the Director
National Institutes of Health
8:40 a.m. Charge to the Panel
David M. Murray, Ph.D.
Associate Director for Prevention
Director
Office of Disease Prevention
Division of Program Coordination, Planning, and Strategic Initiatives
Office of the Director
National Institutes of Health
8:50 a.m. Workshop Overview and Panel Activities
Carmen R. Green, M.D.
Associate Vice President and Associate Dean for Health Equity and Inclusion
Professor of Health Management and Policy, Anesthesiology, and Obstetrics
and Gynecology
Office for Health Equity and Inclusion
University of Michigan Health System
9:00 a.m. Overview of Topic
Susan E. Maier, Ph.D.
Deputy Director
Office of Research on Women's Health
Office of the Director
National Institutes of Health
9:20 a.m. Patient Perspective
Robert Miller
Patient and Advocate
9:40 a.m. Case Definition Presentation
Leonard A. Jason, Ph.D.
Professor of Psychology
Director
Center for Community Research
DePaul University
10:00 a.m. Break
Session 1: What is the incidence and prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and whom does it affect?
10:20 a.m. Evidence-based Practice Center I: Overview of Systematic Review
Methodology

Heidi D. Nelson, M.D., M.P.H.
Medical Director of Cancer Prevention and Screening
Providence Cancer Center
Providence Health and Service
Vice-Chair and Research Professor
Departments of Medical Informatics and Clinical Epidemiology
Pacific Northwest Evidence-based Practice Center
Oregon Health & Science University
10:40 a.m. Quantifying ME/CFS in the Population: Consideration of Case Definition
and Insights from Gulf War Illness and Other Symptom-Defined
Conditions

Lea Steele, Ph.D.
Director
Veterans Health Research Program
Institute of Biomedical Studies
Baylor University
11:00 a.m. Social Determinants of Health
Abigail A. Brown, M.A.
Doctoral Candidate
Clinical-Community Psychology
DePaul University
11:20 a.m. Epidemiology of ME/CFS: Making Sense of What We Know
Luis Nacul, M.D., Ph.D., M.F.P.H.
Chief Investigator
CURE-ME
London School of Hygiene & Tropical Medicine
11:40 a.m. Discussion
12:20 pm Lunch (at the expense of the attendee)
Session 2: Given the unique challenges to ME/CFS, how can we foster innovative research to enhance the development of treatments for patients?
1:20 p.m. Incorporating Multiple Study Designs Into ME/CFS Research
Dedra Buchwald, M.D.
Professor of Epidemiology and General Internal Medicine
Center for Clinical and Epidemiological Research
University of Washington School of Public Health
1:40 p.m. Maximizing Approaches and Results From the Study of Other Illnesses
and Complex Chronic Conditions

Daniel J. Clauw, M.D.
Professor of Anesthesiology, Medicine and Psychiatry
University of Michigan Medical School
Director
Chronic Pain and Fatigue Research Center
University of Michigan Medical Center
2:00 p.m. Using Research on Co-Morbidities to Understand ME/CFS
Niloofar Afari, Ph.D.
Associate Professor
University of California, San Diego Healthcare System
Director of Clinical Research
Veterans Affairs (VA) Center of Excellence for Stress
and Mental Health
Division Co-Director
Mental Health Integrative and Consultative Services
VA San Diego Healthcare System
2:20 p.m. Discussion
3:00 p.m. Break
Session 3: What does research on ME/CFS tell us about the presentation and diagnosis of ME/CFS in the clinic?
3:20 p.m. Evidence-based Practice Center II: Studies of Diagnostic Methods
M.E. Beth Smith, D.O.
Associate Professor
Department of Medical Informatics and Clinical Epidemiology
Pacific Northwest Evidence-based Practice Center
Oregon Health & Science University
3:40 p.m. Leading Questions Always Collect Inaccurate Information:
Lessons From Current Treatments and Clinical Trials

Christopher R. Snell, Ph.D.
Scientific Advisory Committee Chair
The Workwell Foundation
4:00 p.m. Comparative Effectiveness Research
Andreas M. Kogelnik, M.D., Ph.D.
Founder and Director
Open Medicine Institute
4:20 p.m. The Future Of Self-Management in ME/CFS
Fred Friedberg, Ph.D.
Research Associate Professor of Psychiatry and Behavioral Science
Stony Brook University
4:40 p.m. Discussion
5:15 p.m. Adjourn

Wednesday, December 10, 2014

Session 4: What tools, measures, and approaches help define individuals with ME/CFS?
8:30 a.m. Evidence-based Practice Center III: Treatment: Medications and
Complementary and Alternative Medicine

Heidi D. Nelson, M.D., M.P.H.
Medical Director of Cancer Prevention and Screening
Providence Cancer Center
Providence Health and Service
Vice-Chair and Research Professor
Departments of Medical Informatics and Clinical Epidemiology
Pacific Northwest Evidence-based Practice Center
Oregon Health & Science University
8:50 a.m. Evidence-based Practice Center IV: Treatment: Counseling Therapies and
Exercise

M.E. Beth Smith, D.O.
Associate Professor
Department of Medical Informatics and Clinical Epidemiology
Pacific Northwest Evidence-based Practice Center
Oregon Health & Science University
9:10 a.m. Reducing Patient Heterogeneity by Subgrouping
Benjamin H. Natelson, M.D.
Director
Pain and Fatigue Study Center
Mount Sinai Beth Israel
Professor of Neurology
Icahn School of Medicine at Mount Sinai
9:30 a.m. Measures: Patient-Reported and Physiologic
Elizabeth R. Unger, Ph.D., M.D.
Chief
Chronic Viral Diseases Branch
Division of High-Consequence Pathogens and Pathology
National Center for Emerging and Zoonotic Infectious Diseases
Centers for Disease Control and Prevention
9:50 a.m. Innovative Approaches in Fatigue Research: Phenotyping, Biomarker
Discovery, and Statistics

Leorey N. Saligan, Ph.D., R.N., CRNP, FAAN
Investigator
Symptom Management Branch
National Institute of Nursing Research
National Institutes of Health
10:10 a.m. The Role of the Immune System in ME/CFS
Mady Hornig, M.D., M.A.
Director of Translational Research
Center for Infection and Immunity
Associate Professor of Epidemiology
Columbia University Mailman School of Public Health
10:30 a.m. Discussion
11:30 a.m. Break
Session 5: How are tools and measures used to distinguish subsets of patients with ME/CFS?
11:50 a.m. Identification of Subsets of Individuals
Nancy G. Klimas, M.D.
Director
Miami Veterans Affairs Gulf War Illness and ME/CFS Research Program
Professor and Chairperson
Department of Clinical Immunology
Scientific Director
Institute for Neuro-Immune Medicine
Nova Southeastern University
12:10 p.m. Subtypes of CFS/ME: New Discoveries and Unanswered Questions
Renée R. Taylor, Ph.D.
Vice Provost for Faculty Affairs
Licensed Clinical Psychologist
Professor
Department of Occupational Therapy
University of Illinois at Chicago College of Allied Health Sciences
12:30 p.m. What Outcomes Represent Improvement, Recovery, Prevention, Benefits,
or Harms?

Suzanne D. Vernon, Ph.D.
Scientific Director
Solve ME/CFS Initiative
12:50 p.m. Discussion
1:20 p.m. Workshop Wrap-Up/Next Steps
1:30 p.m. Adjourn
Attendees will be responsible for meals and/or light refreshments on their own, at their own cost. The government and/or government contractors are not involved in facilitating the provision of food and/or light refreshments.