ME/CFS Canadian Collaborative Team Conference

The ME/CFS Canadian Collaborative Team Conference is sponsored by the ME/CFS Canadian Collaborative Team.

2018

The first conference was held May 3-5, 2018, in Montreal, Canada.

Day 1 Speakers

• Morris Duhaime, MD, Conference Chair - Welcome address

Session 1 - ME/CFS: Spectrum of a Complex and Chronic Disease

• Alison C. Bested, M.D., FRCP(C), Clinical Director, Institute for Neuro Immune Medicine, Nova Southeastern University, Fort Lauderdale, US- Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Clinicians
• Byron Hyde, M.D., Nightingale Research Foundation, Ottawa, Canada - Brain Imaging and How to Examine a Prospective ME/CFS Patient
• Peter C. Rowe, M.D., Director, Children’s Center Chronic Fatigue Clinic, John-Hopkins University, Baltimore, US - Orthostatic Intolerance in ME/CFS
• Ric Arseneau, M.D., FRCP(C), MA(Ed), MBA, FACP, CGP, Clinical Associate Professor, Division of General Internal Medicine, St. Paul’s Hospital, Women’s Hospital, University of British Columbia, Canada - ME/CFS: Central Sensitivity Syndromes and the Complex Chronic Diseases Program at BC Women’s Hospital
• Lucinda Bateman, M.D., Founder and Medical Director, Bateman Horne Center, Salt Lake City, US - Objective Diagnosis of ME/CFS
• Roland Staud, M.D., Professor of Medicine, University of Florida, US - Peripheral and Central Mechanisms of Chronic Fatigue Syndrome

Session 2a - How to Differentiate and Manage ME/CFS

• Eleanor Stein, M.D., FRCP(C), Calgary, Canada - Differentiating ME/CFS from Psychiatric Disorders
• Peter C. Rowe, M.D., Director, Children’s Center Chronic Fatigue Clinic, John-Hopkins University, Baltimore, US - Management of Pediatric ME/CFS
• Betsy Keller, PhD, Professor, Department of Exercise and Sport Sciences, Ithaca College, Ithaca, US - What Do We Learn About ME/CFS From a Cardiopulmonary Exercise Test?

• Riina I. Bray, BASc, MSc, M.D., FCFP, MHSc, Medical Director, Environmental Health Clinic, Women’s College Hospital, Toronto, Canada - Diagnostic Dilemmas: Etiology and Treatment of the Fatigued Patient
• Kevin Mejo, BPharm, Montréal, Canada - ME/CFS Pharmacotherapies and Drug Interactions
• Alain Moreau, Chair, Scientific Committee, Professor, University of Montreal, Canada - Closing Remarks

Session 2b - Pre-Conference Workshop on Meeting Unmet Needs

• Organized by the National ME/FM Action Network

Day 2 Speakers

• Byron Hyde, M.D., Nightingale Research Foundation, Ottawa, Canada - A Short History of ME and CFS
• Ronald Davis, PhD, Director, Stanford Genome Center, Stanford University, Palo Alto, US - The Future of ME/CFS Research in the Multiomic and Big Data Era

Session 1a - Genetics, Genomics and Epigenetics

• Wilfred de Vega, PhD, University of Toronto, Canada - The Epigenetic Landscape of ME/CFS: Deciphering Complex Phenotypes
• Ronald Davis, PhD, Director, Stanford Genome Center, Stanford University, Palo Alto, US - An Integrative, Molecular, Data and Technology-Driven Approach to ME/CFS
• Alain Moreau, Professor, University of Montreal, Canada - Genetic and Nutriepigenetic Regulation of Plasma Homocysteine Levels in ME/CFS
• Alexis Goth, M.D., and Tara Sampalli, PhD, Integrated Chronic Care Service in Primary Health Care at the Nova Scotia Health Authority, Canada - Cultivating Change: Leveraging Epigenetics via Lifestyle Modification: An Integrative Multidisciplinary Treatment Model in ME/CFS

Session 2a - Biochemistry, Metabolomics and Proteomics

• Maureen Hanson, M.D., Cornell University, Ithaca, US - Metabolism in ME/CFS
• Jonas Bergquist, M.D., PhD, Uppsala University, Sweden - The Biochemistry to Support the Evidence of Neuroinflammatory Involvement in ME/CFS
• Cara Tomas, PhD candidate, Institute of Cellular Medicine, Newcastle University, UK - Cellular Bioenergetics is Impaired in Patients with ME/CFS
• Peter C. Rowe, M.D., Director, Children’s Center Chronic Fatigue Clinic, John-Hopkins University, Baltimore, US - Connective Tissue Laxity and Adverse Neural Tension in ME/CFS

Session 3a - Infection, Immunity and Clinical Research

• Amir Landi, M.D., PhD, University of Alberta, Edmonton, Canada - Diagnosis of ME/CFS: Can Immune Modulators Play a Role?
• Luis Nacul, M.D., PhD, Faculty of Infectious and Tropical Diseases, CURE-ME Team, London School of Hygiene and Tropical Medicine Disability and Eye Health Group, UK - Epidemiological and Clinical Research in ME/CFS: How Can They Support Hypothesis Generation and Testing?
• Carmen Scheibenbogen, M.D., Professor and Deputy Chair, Institute of Medical Immunology, Charité – Universitätsmedizin, Berlin, Germany - Clinical Trial on Immunoadsorption in ME/CFS
• Derya Unutmaz, M.D., The Jackson Laboratory, Farmington, US - Fine-Tuned Interaction Between Human Immune System and Gut Microbiota: Potential Impact on ME/CFS

Session 4a - Biomarkers, Biobanking, and Clinical Trials

• Carmen Scheibenbogen, M.D., Professor and Deputy Chair, Institute of Medical Immunology, Charité – Universitätsmedizin, Berlin, Germany - The EUROMENE Biomarker Project
• Roland Staud, M.D., Professor of Medicine, University of Florida, US - Cerebral Blood Flow and Functional Connectivity in ME/CFS
• Luis Nacul, M.D., PhD, Faculty of Infectious and Tropical Diseases, CURE-ME Team, London School of Hygiene and Tropical Medicine Disability and Eye Health Group, UK - UK ME/CFS Biobank: A Resource for International Research
• Chris Armstrong, BSc, Researcher, University of Melbourne, Bio21 Molecular Science and Biotechnology Institute, Department of Biochemistry and Molecular Biology, Melbourne, Australia - Australian ME/CFS Databases and Biobanks: The Down Under Experiences
• Nancy Klimas, M.D., Institute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University and Director of Environmental Medicine, Miami VA Medical Center, US - From Biomarkers and Modeling to Implemented Targeted Clinical Trials: Comparison Between Gulf War Illness and ME/CFS
• Vicky Holets Whittemore, PhD, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, US - The Future of Research on ME/CFS
• Linda Tannenbaum, CEO/President, Open Medicine Foundation, Los Angeles, US

Session 1b - What We Know and Still Don’t Know About ME/CFS Etiology and Pathomechanism

• Alison C. Bested, M.D., FRCP(C), Clinical Director, Institute for Neuro Immune Medicine, Nova Southeastern University, Fort Lauderdale, US- Pathophysiological Mechanisms in ME/CFS
• Lucinda Bateman, M.D., Founder and Medical Director, Bateman Horne Center, Salt Lake City, US - Objective Diagnosis of ME/CFS
• Eleanor Stein, M.D., FRCP(C), Calgary, Canada - ME/CFS: Could Neuroplasticity Play a Role?

Session 2b - Advancing ME/CFS Research and Treatments

• Margaret Parlor, President of the National ME/FM Action Network, Ottawa, Canada - ME/CFS Research Landscape in Canada: How Can Science/Innovation Address Unmet Needs?

• Betsy Keller, PhD, Professor, Department of Exercise and Sport Sciences at Ithaca College, Ithaca, US - Is Heart Rate a Valid Exertional Index in ME/CFS?

• Eleanor Stein, MD, FRCP(C), Calgary, Canada and Judy-Anne Wilson, representative of Edmonton ME Society and Alison Rae, Board Chair and CEO, Action CIND - Alberta Healthy Living Program: The Role of ME/CFS Education

Session 3b - Panel Discussion 1: Meet the Experts

• Kevin Mejo, BPharm - Medication and ME
• Valérie Marcil, PhD, DtP - Nutrition and ME
• Alexis Goth, MD, CCFP(C) - Genetics and ME

Session 4b - Panel Discussion 2: Creating a Transformative Research Agenda for ME/CFS

Panellists / Experts: Diane Ching, President, ME Society of Edmonton; Kati Debelic, Board Member, ME/FM Myalgic Encephalomyelitis and Fibromyalgia Society of BC, Canada; Barbara Fifield, Co-founder, Millions Missing Canada; Bev Friesen, Chairperson of the Board, Manitoba ME/CFS Support Group, Canada, Gloria Gray, President, M.E. Victoria Association, BC, Canada, Carol Head, Solve ME/CFS Initiative; Kimberly Hicks, Board Member and Treasurer, Open Medicine Foundation, Los Angeles, US; Valérie Miller, General Coordinator of Association Québécoise de l’Encéphalomyélite Myalgique (AQEM), Canada; Margaret Parlor, President, The National ME/FM Action Network, ON, Canada; Alison Rae, Board Chair and CEO, Action CIND, ON, Canada; Elizabeth Sanchez, President, ME/FM Myalgic Encephalomyelitis and Fibromyalgia Society of BC, Canada; Linda Tannenbaum, CEO/President, Open Medicine Foundation, Los Angeles, US

Day 2 Speakers

• Alain Moreau, PhD, Chairman of the Scientific Committee, Full Professor, University of Montreal, Canada - Introduction and Objectives

Session 1 - Developing ME/CFS Networks and International Collaboration

• Raeka Aiyar, PhD, Stanford University and Open Medicine Foundation, Palo Alto, CA, US - Moderator: Developing ME/CFS Networks and International Collaboration
• Margaret Parlor, President of the National ME/FM Action Network, Ottawa, Canada - Report from the ME/CFS Patient Community about Creating a Transformative Agenda for ME/CFS
• Becky McNeil, PhD, Biostatistics and Epidemiology Division, RTI International, Research Triangle Park, NC, US - The Common Data Element Challenge in Establishing ME/CFS Research Consortia

Event program

• 1st ME/CFS Canadian Collaborative Team Conference

Articles

• First-Ever ME/CFS Collaborative Conference Held in Canada by Solve ME/CFS Initiative

Learn more

• 10-minute patient video about the conference (YouTube)

chronic disease a disease or condition that usually lasts for 3 months or longer and may get worse over time. Chronic diseases are long-term (typically incurable and requiring long-term management) but are not necessarily severe.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

chronic disease a disease or condition that usually lasts for 3 months or longer and may get worse over time. Chronic diseases are long-term (typically incurable and requiring long-term management) but are not necessarily severe.

two-day cardiopulmonary exercise test (CPET) - A diagnostic test which involves testing an ME/CFS patient exercising on an exercise machine, while monitoring their respiration, especially oxygen consumption. This test is repeated the following day in order to confirm the patient's inability to replicate the first-day performance. This test is thought to be the most objective way to detect post-exertional malaise.

etiology The cause of origin, especially of a disease.

genome an organism's complete set of DNA, including all of its genes

plasma The liquid part of blood, lymph, or milk after removing any suspended material. Most of the time, "plasma" simply refers to blood, after all the blood cells have been removed. If you also remove the clotting factors, then the plasma is referred to as "serum".

metabolomics The analysis of the chemical metabolism within cells, tissues or organisms. The term is often used to refer to the full set of metabolites found in a cell in a given environment.

cerebral 1. of or relating to the brain or the intellect 2. of, relating to, affecting, or being the cerebrum.

heart rate (HR) - the number of times the heart beats within a certain time period, usually a minute

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.