Conferences 2016 Fort Lauderdale Agenda Professional Agenda
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KEYNOTE SPEAKER:  Dr. Vicky Whittemore, National Institutes of Health, Program Director, Channels, Synapses and Circuits, National Institute of Neurological Disorders and Stroke
 

October 27, 2016.  IACFS/ME Conference Keynote Presentation
New ME/CFS Developments at the National Institutes of Health

Dr. Whittemore received her Ph.D. in anatomy from the University of Minnesota, followed by post-doctoral work at the University of California, Irvine, and a Fogarty Fellowship at the Karolinska Institute in Stockholm, Sweden. She was on the faculty of the University of Miami School of Medicine in The Miami Project to Cure Paralysis prior to working with several non-profit organizations including the Tuberous Sclerosis Alliance, Genetic Alliance, Citizens United for Research in Epilepsy (CURE), and the National Coalition for Health Professional Education in Genetics (NCHPEG). She also served a four-year term on the National Advisory Neurological Disorders and Stroke Council.
 
Dr. Whittemore has been a strong voice for increasing the research commitment for ME/CFS at the NIH. This includes launching a research protocol at the NIH Clinical Center to intensively study individuals with ME/CFS and re-invigorating the efforts of the Trans-NIH ME/CFS Research Working Group. The working group, co-chaired by Dr. Whittemore, consists of representatives from 23 NIH institutes that help to support extramural ME/CFS research. Dr. Vicky Whittemore is also the NIH representative to the U.S. Department of Health and Human Services' Chronic Fatigue Syndrome Advisory Committee.


 
PLENARY SPEAKER:  Dr. Øystein Fluge, Chief Physician, Department of Oncology, Haukeland University Hospital, University of Bergen, Norway

Dr. Fluge is Chief Physician in the Department of Oncology at Haukeland University Hospital, University of Bergen, Norway.  He received his medical degree in 1988 from the University of Bergen and has specialized in oncology since 2004.  He has conducted research at the Surgical Institute and Department of Molecular Biology, University of Bergen and has been funded as a Research Fellow by the Norwegian Cancer Society.

In 2004, Dr. Fluge and his colleague, Dr. Olav Mella, a neurologist at the same institution, noticed that a patient’s ME/CFS symptoms improved substantially while undergoing chemotherapy treatment for a concurrent diagnosis of lymphoma.  This was followed by a pilot study in 2009 with positive results. In 2011, Dr. Fluge, Dr. Mella, and their colleagues published a randomized double-blind placebo-controlled trial of rituximab in 30 ME/CFS patients demonstrating that  two-thirds of the intervention group experienced moderate to major improvements in their ME/CFS symptoms. For a medical condition with no disease-modifying treatments, this was a ground-breaking study. Currently, they are in the midst of attempting to replicate their results in a larger Phase III multi-center study in Norway.
 
12th International IACFS/ME Biennial Clinical and Research Conference
Emerging Science and Clinical Care

Thursday, October 27th

8:00 am – 8:20 am            
Welcome and Introduction
Dr. Fred Friedberg
President, IACFS/ME
Research Associate Professor, Stony Brook University
Founder and Editor, Fatigue: Biomedicine, Health and Behavior
Nova Southeastern University and local officials, to be determined

8:20 am – 9:15 am (last 15 min. are Q and A)           
Keynote Address
New ME/CFS Developments at the National Institutes of Health
Dr. Vicky Whittemore
Program Director, Channels, Synapses and Circuits
National Institute of Neurological Disorders and Stroke
United States National Institutes of Health

9:30 am – 12:30 pm
Professional workshops (run concurrently; attendees select one only)


Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities/Environmental Sensitivities: Office Assessment and Management
Alison Bested, M.D., F.R.C.P.C.
Clinical associate professor, Department of Medicine, University of British Columbia

Learn to diagnose and treat the patients with complex chronic medical conditions in your office.

Acute and Chronic Enteroviral Infection
John Chia, M.D.
UCLA School of Medicine

The workshop entitled “Acute and Chronic Enterovirus Infection” is for professionals who would are interested in these virus infections and association with ME/CFS. Nurses, nurse practitioners, physician assistants, physicians, researchers, epidemiologist will gain basic knowledge to recognize and diagnose these medical conditions and learn to associate these infections with ME/CFS.

How Cardiopulmonary Exercise Testing Informs Pathology and Treatment
Mark Van Ness, Ph.D.
Department of Health, Exercise, and Sport Science, University of the Pacific
Christopher Snell, Ph.D.
Scientific Advisor, WorkWell Foundation
Betsy Keller, Ph.D.
Department of Exercise and Sport Sciences, Ithaca College

Cardiopulmonary exercise testing (CPET) is a data collection paradigm that accurately and objectively describes the post-exertional response that ME/CFS patients experience. CPET will be described, including its utility for understanding ME/CFS pathology. Information will be presented about how the post-exertional state is particularly useful for data collection pertaining to immunological, neurological and hormonal conditions.

1:30 pm – 4:30 pm
Professional workshops (run concurrently; attendees select one only)


Behavioral Assessment and Treatment of ME/CFS and Fibromyalgia
Fred Friedberg, Ph.D.
President, IACFS/ME
Research Associate Professor, Stony Brook University
Founder and Editor, Fatigue: Biomedicine, Health and Behavior
Leonard A. Jason, Ph.D.
Professor, DePaul University

In this introductory workshop on CFS/ME and fibromyalgia (FM), participants will learn about practical methods of behavioral assessment and individualized treatment strategies. Our approach consists of self-management focused interventions and non-pharmacologic strategies for clinicians that can offer realistic hope for improvement in these patients. This workshop will benefit clinicians who work with CFS/ME and FM patients.

Diagnosing and Treating Orthostatic Intolerance
Peter Rowe, M.D.
Johns Hopkins University School of Medicine

Postural tachycardia and hypotension in response to orthostatic stress are common in those with ME/CFS. These circulatory disturbances contribute to ME/CFS symptoms and lower quality of life. This workshop will help clinicians identify and treat common forms of orthostatic intolerance in their patients with ME/CFS.

NIH Grant Writing Workshop
Vicky Whittemore, Ph.D.
Program Director, Channels, Synapses and Circuits
National Institute of Neurological Disorders and Stroke

The NIH Grant Writing Workshop will review skills that are critical for becoming a successful grant applicant.


General Session Agenda-Friday, October 28th

8:00 am – 8:15 am            
Welcome and Introduction
Fred Friedberg, Ph.D.
President, IACFS/ME
Research Associate Professor, Stony Brook University
Founder and Editor, Fatigue: Biomedicine, Health and Behavior

8:15 am – 9:00 am (last 15 min. are Q and A)           
Plenary Session
B-lymphocyte depletion and disease mechanisms in ME/CFS
Oystein Fluge, M.D.
Chief Physician, Department of Oncology,
Haukeland University Hospital, University of Bergen, Norway

Paper Sessions   following short paper presentations each 12 minutes in length, presenters will field questions written on cards by the audience and given to the chair as time permits.

9:00 am – 10:15 am          
Session 1: The Latest Research in Immunology and the Microbiome  
Session Chair: Mady Hornig, M.D.
Mailman School of Public Health, Columbia University Medical Center

Exercise testing highlights differences in cytokine profile and network between patients with chronic fatigue syndrome and healthy sedentary participants
Jose G. Montoya, M.D., Stanford University School of Medicine

A panel of biomarkers accurately identifies CFS/ME patients and contributes to the understanding of the pathophysiology of the disorder
Kenny L. De Meirleir, M.D., Nevada Center for Biomedical Research at University of Nevada

A profile of circulating cytokines is associated with disease severity in chronic fatigue syndrome patients
Jose G. Montoya, M.D., Stanford University School of Medicine

Alterations in the enteric bacterial and viral microbiome in ME/CFS
Ludovic Giloteaux, Ph.D., Department of Molecular Biology and Genetics, Department of Microbiology, Cornell University

10:15am – 10:45 am
Break/Visit Exhibits

10:45 am – 12:15 pm
Session 2: Treatment Studies and Clinical Practice    
Chair: Daniel Peterson, M.D.
Griffith University, Gold Coast, Australia
Owner, Sierra Internal Medicine, Incline Village, Nevada

Reflections on the rituximab trials
Olav Mella, M.D., Department director/professor, Haukeland University Hospital, Oslo, Norway

Synergy Trial for CFS – a phase 2 study of low-dose methylphenidate plus mitochondrial support
Lucinda Bateman, M.D., Bateman Horne Center of Excellence

N-Acetylcysteine alleviates cortical glutathione deficit and improves symptoms in CFS:
An in vivo validation study using proton magnetic resonance spectroscopy
Dikoma Shungu, Ph.D., Departments of Radiology, Neurology and Neuroscience, Weill Cornell Medicine

A re-examination of the cognitive behavioral theory of CFS
Madison Sunnquist, DePaul University

Potential for an immunosignature assay to aid in classification and prediction of rituximab response in ME/CFS
David Patrick, M.D., FRCPC, MHSc, University of British Columbia School of Population and Public Health

12:15 pm – 1:45 pm
Lunch Break/Visit Exhibitors

Special Lunch Sessions

1. ME/CFS studies at the Centers for Disease Control and Prevention

Multi-site Clinic Assessment of ME/CFS (MCAM)
Chair: Elizabeth R. Unger, M.D., Ph.D.
Chief, Chronic Viral Diseases Branch
Centers for Disease Control and Prevention (CDC)

Study design of the multi-site clinic assessment of ME/CFS (MCAM)
Elizabeth R. Unger, M.D., Ph.D.
Jin-Mann S. Lin, Ph.D., Senior statistician/epidemiologist, US Centers for Disease Control and Prevention

Data on cognitive function from Multi-Site Clinical Assessment of Myalgic Encephomyelitis/Chronic Fatigue Syndrome (MCAM) – Preliminary Analysis
Gudrun Lange, Ph.D., Consulting Clinical Neuropsychologist, Mount Sinai Beth Israel Pain and Fatigue Study Center

Exercise testing data from the Multi-Site Clinic Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) Study
Dane Cook, Ph.D., Professor of Kinesiology, University of Wisconsin-Madison

Salivary test data from the Multi-site Clinic Assessment of Myalgic Encephomyelitis/Chronic Fatigue Syndrome (ME/CFS) (MCAM) Study
Jin-Mann S. Lin, Ph.D., Senior statistician/epidemiologist, US Centers for Disease Control and Prevention

Pilot study evaluating impact of sample processing and assay format on measured natural killer cell function
Troy Querec, Ph.D., Associate Service Fellow, Associate Service Fellow

Description of the Multi-site Clinic Assessment of ME/CFS (MCAM) Study
Mangalathu Rajeevan, Ph.D., Research Microbiologist, US Centers for Disease Control and Prevention

2. Mitochondrial Dysfunction: A Potential Etiology for ME/CFS?
Moderator: Jon D. Kaiser, MD, University of California Medical School, San Francisco
 
Speaker Panel:         Ron Davis, MD, Stanford University Medical School
                                Nancy Klimas, MD, Neuro Immune Institute, NOVA Southeastern
                                Dikoma Shungu, PhD, Departments of Radiology, Neurology
                                                                    and Neuroscience, Weill Cornell Medicine
 
Mitochondrial dysfunction is an etiologic mechanism that may explain the multisystem range of symptoms experienced by CFS patients. Electron micrographs of muscle biopsies have revealed abnormal mitochondrial degeneration. Evidence of oxidative damage and increased activity of antioxidant enzymes have also been chemically detected in muscle specimens of CFS patients. The classic presentation for an illness manifesting mitochondrial dysfunction is one that involves multiple symptoms spanning many domains. These typically include fatigue, cognitive impairment and other brain-related challenges, muscle weakness, exercise intolerance, and gastrointestinal problems. The broad symptoms profile found in ME/CFS is consistent with this description of a mitochondrial dysfunction disease.
 
Each panelist will share their perspective on this topic for ten minutes, including an overview of their own investigations, to be followed by a Q&A session.

1:45 pm – 2:45 pm
Session 3: Gulf War Illness
Session Co-chairs:
Kristy Lidie, Ph.D., US Department of Defense
Victor Kalisinsky, Ph.D., US Department of Veterans Affairs
Gulf War Illness Program Officers

Gulf war illness and chronic fatigue syndrome: lessons learned
Presenter: Lea Steele, Ph.D., Professor and Yudofsky Chair in Behavioral Neuroscience, Baylor College of Medicine
 
Brain Immune Interactions in Gulf War Illness: Cytokines and Cognition in US Military Veterans
Kimberly Sullivan, Ph.D., Boston University Medical Campus

Genomic approach to find mechanisms of Gulf War Illness pathobiology
Lubov Nathanson, Ph.D., Institute for Neuro Immune Medicine, Nova Southeastern University

Using gene expression signatures to identify novel treatment strategies in Gulf War Illness
Travis Craddock, Ph.D., Department of Psychology & Neuroscience, Nova Southeastern University

2:45 pm – 3:15pm             
Break/Visit Exhibits

3:15 pm – 5:15 pm    
Session 4: Diagnosing CFS/ME; Difficult Clinical Cases: Focus on Fatigue and Pain
Session Chair: Nancy Klimas, M.D.
Immediate Past President, IACFS/ME
Professor of Medicine & Director, Nova Southeastern University
Director, Miami VAMC Gulf War Illness & ME/CFS Research Program

Panel: 
Lucinda Bateman, M.D., Bateman Horne Center of Excellence, Utah
John Chia, M.D., UCLA School of Medicine
Charles Lapp, M.D., Hunter-Hopkins Center, North Carolina
Dan Peterson, M.D., Sierra Internal Medicine, Incline Village, Nevada
Katherine Rowe, M.D., Royal Children's Hospital, Australia
Peter Rowe, M.D., Johns Hopkins University School of Medicine

5:15 pm – 6:00 pm   
Visit Poster Presentations/Exhibits

Evening Session
6:30 pm – 8:30 pm
Common Data Elements (CDEs) for Standardized Testing and Clinical Studies
Chair: Vicky Whittemore, Ph.D.
Program Director, Channels, Synapses and Circuits
National Institute of Neurological Disorders and Stroke

The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health and the Center for Disease Control and Prevention (CDC) will partner to develop common data elements (CDEs) for standardized testing and common data elements to be recorded in clinical studies/trials of individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The development of CDEs for ME/CFS will facilitate the comparison of results across studies and help to standardize analysis. The session will be led by NINDS and CDC Program Staff to discuss the timeline and process for developing the CDEs and to obtain feedback and input from ME/CFS stakeholders.


General Session Agenda-Saturday, October 29th  

8:00 am – 9:00 am            
Session 5: CFS, SEID, ME Case Definitions: Clinical vs. Research Criteria 
Presenter: Leonard Jason, Ph.D. 
Professor, DePaul University, Director of the Center for Community Research

Discussants:
Lucinda Bateman, M.D.
Chief Medical Officer
Bateman Horne Center of Excellence
Salt Lake City, Utah

Jon Kaiser, M.D.
IACFS/ME Board Member
University of California, San Francisco

9:00 am – 10:00 am
Session 6: Symptom Provocation Studies I   
Chair: Staci Stevens, M.A.
Founder, WorkWell Foundation

Cardiopulmonary exercise testing demonstrates post-exertional chronotropic incompetence
Mark Van Ness, Ph.D., Department of Health, Exercise, and Sport Science, University of the Pacific

Post-exertional malaise: multiple and unexpected symptoms, sometimes delayed, often prolonged 
Lily Chu, M.D., Stanford University School of Medicine

Cognitive function in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis: A novel paradigm
Sarah Knight, Ph.D., Murdoch Children’s Research Institute, Australia

10:00 am – 10:30 am
Break/Visit Exhibits

10:30 am – 12:15 pm       
Session 7: Public Health Research   
Chair:   Steve Krafchick, MPH, JD
IACFS/ME Board Member

Estimating rates of pediatric chronic fatigue syndrome and myalgic encephalomyelitis in a community-based sample
Leonard A. Jason, Ph.D., DePaul University

Two year follow-up of impaired range of motion in adolescent chronic fatigue syndrome
Peter C. Rowe, M.D., Johns Hopkins University School of Medicine

Allergic disorder phenotypes in ME/CFS and patterns of medical comorbidity and clinical dysfunction
Susan Levine, M.D., Cornell Medical Center, New York City

Exploring the role of sex hormones in driving symptom severity in ME/CFS
Gordon Broderick, Ph.D., Department of Medicine, University of Alberta

Nurses’ acute fatigue predicts sickness absence in the workplace: a 1-year retrospective cohort study
Knar Sagherian, RN, MSN, University of Maryland School of Nursing

Examining the accuracy of a physical diagnostic technique for chronic fatigue syndrome/myalgic encephalomyelitis: a blind controlled study
Ray Perrin, DO, Ph.D., Honorary Senior Lecturer: Allied Health Professions Research Unit, University of Central Lancashire, UK

Demographics of young people diagnosed with CFS in Victoria Australia
Katherine Rowe, M.B.B.S., M.D.,
Royal Children's Hospital, Melbourne, Australia

12:15 pm – 1:45 pm
Lunch Break/Visit Exhibits

Lunch Panel
Special Interest Groups: International Research Networks
David Patrick, Ph.D., Moderator
Professor and Director
School of Population and Public Health
University of British Columbia, Canada

European network on myalgic encephalomyelitis/chronic fatigue syndrome (EUROMENE)
Eliana Lacerda, M.D., Ph.D., Assistant Professor, London School of Hygiene & Tropical Medicine

The case for stratification in ME/CFS: Experience from the UK ME/CFS Biobank
Luis Nacul, M.D., Ph.D.
London School of Hygiene & Tropical Medicine

1:45 pm – 2:45 pm
Session 8: Research on Autonomic Functioning and Comorbidities
Chair:  Peter Rowe, M.D., Johns Hopkins University School of Medicine

Postural tachycardia in chronic fatigue syndrome induced by exercise
Madison Keefe, B.S., Georgetown University

Distribution of dolorimetry in CFS, FM, GWI and control women
Rakib Rayhan, M.S., Department of Medicine, Georgetown University

Truncal ataxia is an unrecognized cause of orthostatic intolerance in patients with myalgic encephalomyelitis
Kunihisa Miwa, M.D.
Miwa Naika Clinic, Japan

2:45 pm – 3:45 pm
Session 9: Advances in Brain Research and Neurological Studies    
Chair: Anthony L. Komaroff, M.D., Professor of Medicine, Harvard Medical School (retired)

Assessment of neurobiological dysfunction in chronic fatigue syndrome
Ben Natelson, M.D.
Pain & Fatigue Study Center, Mount Sinai Beth Israel

Disrupted functional connectivity in Gulf War illness (GWI)
James N. Baraniuk, M.D., Department of Medicine, Georgetown University

Functional neural consequences of post-exertion malaise in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Dane B. Cook, Ph.D., University of Wisconsin-Madison

3:45 pm – 4:00 pm            
Break/Visit Exhibits

4:00 pm – 5:00 pm
Visit Poster Presentations/Exhibits

5:00 pm – 6:00 pm            
IACFS/ME Membership Business Meeting

6:00 pm – 7:00 pm            
IACFS/ME Social/Cocktails Hour

7:00 pm – 8:00 pm            
IACFS/ME Banquet Dinner

8:00 pm – 9:00 pm            
Awards Presentation


General Session Agenda-Sunday, October 30th
 
8:00 am – 9:15 am
Session 10: Symptom Provocation Studies II  
Chair: Betsy Keller, Ph.D.
Department of Exercise and Sport Sciences, Ithaca College

Blood lactate increases more rapidly after a previous exercise challenge in patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) than in healthy subjects
Katarina Lien, M.D., Ph.D., University of Oslo

Subsets of ME/CFS patient responses to a 2-day CPET
Betsy Keller, Ph.D., Department of Exercise and Sport Sciences, Ithaca College

Neuromuscular Strain Increases Symptom Intensity in Chronic Fatigue Syndrome  
Peter Rowe, M.D, Johns Hopkins University School of Medicine

Polar Metabolites Distinguish ME/CFS Patients and Controls
Maureen Hanson, Ph.D., Department of Molecular Biology and Genetics, Cornell University

9:15 am – 10:30 am
Session 11:  Genetics Research
Chair:  Jose Montoya, M.D.
Professor of Medicine, Stanford University Medical Center

Single nucleotide polymorphisms in myalgic encephalomyelitis: possible genetic factors influencing pathophysiology
Benjamin Eike, B.A., Nova Southeastern University, College of Osteopathic Medicine

Using gene expression modules to identify gender specific treatments in myalgic encephalomyelitis/chronic fatigue syndrome
Mary G. Jeffrey, Institute for Neuro-Immune Medicine, Nova Southeastern University

Epigenetic modifications and glucocorticoid sensitivity in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Wilfred de Vega, Ph.D. Can.
University of Toronto

ME/CFS miRNA analysis, mRNA in-situ hybridization and STAT1 localization upon stress trigger
Paula A. F. Waziry, Ph.D., Institute of Neuro Immune Medicine, Nova Southeastern University

Genomics of chronic fatigue syndrome reveals systemic inflammatory response
Jose G. Montoya. M.D., Stanford University School of Medicine

10:30 am – 10:45 am       
Break

10:45 am – 12:15 pm
Session 12: Panel Discussion
“Nothing about us without us:” How community-engaged research can accelerate progress in the field of ME/CFS
Moderator: Lily Chu, M.D., MSHS, Co-Vice President, IACFS/ME; Collaborator, Stanford ME/CFS Initiative

Speaker: Leonard Jason, Ph.D., Professor of community psychology, DePaul University (Chicago, Illinois)

Panelists
Jin-Mann Lin, Ph.D., Senior statistician/epidemiologist, US Centers for Disease Control and Prevention
Sonya Chowdhury, Chief Executive, Action for M.E.; Member, United Kingdom ME/CFS Research Collaborative
Terri L. Wilder, M.S.W., Person with ME, Activist
Vicky Whittemore, Ph.D., Chair, US Trans-National Institutes of Health ME/CFS Working Group

12:15 pm – 1:15 pm          
Lunch/Visit Exhibits
Networking Lunch - Offering an opportunity for clinicians to network and talk about assessment and treatment issues.

1:15 pm – 2:30 pm            
Session 13: Medical Education Proposals for ME/CFS
Panel Chair: Susan Levine, M.D., Visiting Fellow, Cornell University, Ithaca, NY

Fellowship program for CFS/ME research (I)
Mady Hornig, M.D., Columbia University Medical Center

A fellowship training program for ME/CFS (II)
Anthony Komaroff, M.D., Harvard Medical School (retired)

Fellowship opportunity in ME/CFS (III)
Daniel Peterson, M.D., Simmaron Research

2:30 pm – 3:00 pm            
Summary of the Conference
Anthony L. Komaroff, M.D.

3:00pm
Conference Concludes