Speakers

SPEAKERS

Member of the Brigham and Women’s Hospital Pulmonary and Critical Care faculty and Assistant Professor of Medicine at Harvard Medical School where he directs the Dyspnea Clinic and the Advanced Cardiopulmonary Exercise Testing Program. He is the co-director of the Ronald G. Tompkins Harvard ME/CFS Collaboration with the Open Medicine Foundation (OMF), is Chairman of the National Institutes of Health (NIH) ME/CFS Research Roadmap Working Group, and is a co-chair of the NIH RECOVER study’s commonalities task force. He has been on the Harvard faculty for over 35 years during which time he has received NIH, American Heart Association, Department of Defense, Dysautonomia International, and OMF funding to study various forms of exercise intolerance. Over the past five years, he has used invasive cardiopulmonary exercise testing to investigate mechanisms underlying fatigue, shortness of breath, and orthostatic intolerance in ME/CFS and long COVID. His recent work suggests a commonality between the two and suggests neurovascular dysregulation and related hyperventilation underlie symptoms during exercise. He served as Principal Investigator of an US$8 million study of limb skeletal muscle mitochondrial dysfunction and completed the first-ever randomized clinical trial of pyridostigmine, both in ME/CFS.

OMF – Ronald G. Tompkins Harvard ME/CFS Collaboration

Science writer, awarded the Pulitzer Prize in explanatory journalism for his coverage of the COVID pandemic; the George Polk Award for science reporting; the Benton Award for distinguished public service; the Victor Cohn Prize for medical science reporting, the Neil and Susan Sheehan Award for investigative journalism; the John P. McGovern Award from the American Medical Writers’ Association; and the AAAS Kavli Science Journalism Award for in-depth reporting.

He is the author of two New York Times bestsellers: An Immense World, about the extraordinary sensory worlds of other animals; and I Contain Multitudes, about the amazing partnerships between animals and microbes

An Immense World won the Carnegie Medal for Excellence in Nonfiction and the Royal Society Trivedi Science Book Prize; it was also a finalist for four other major awards, and was ranked as one of the top books of the year by the New York Times, the New Yorker, the Wall Street Journal, Slate, the Economist, People, Barack Obama, and more than 30 other lists.

Ed Yong’s Website

Clinical Assistant Professor at the London School of Hygiene & Tropical Medicine (LSHTM), with medical residence in Public Health, MSc in Occupational Health, and PhD in Environmental Health.

One of the co-founders of the CureME research team at the LSHTM and co-author of the UK ME/CFS Biobank (UKMEB) project, serving as the clinical director of this biomedical facility; the first European disease-specific research facility, dedicated to improving biomedical research in ME/CFS.

Past elected Vice-Chair of EUROMENE (European Network for ME/CFS), a network funded by COST that brought together twenty-two European countries, to advance research and health care-provision for those with ME/CFS.

Shw co-authored three of the four guidelines issued as a result of this network’s work.

Prof. Dr. Eliana Lacerda at LSHTM
Prof. Dr. Eliana Lacerda on MEpedia

Chief of the Chronic Viral Diseases Branch in the U.S. Centers for Disease Control and Prevention (CDC), responsible for guiding research and public health studies encompassing molecular pathology and epidemiology of human papilloma virus-associated diseases and ME/CFS. She served as co-lead of the Post-COVID Conditions Team in the CDC COVID-19 Response and leveraged understanding of ME/CFS to address Long COVID and to advance research and treatment for both conditions. She is a member of the National Advisory Neurological Disorders and Stroke Council ME/CFS Research Roadmap Working Group. CDC’s ME/CFS program supports education about ME/CFS through its websites and medical education courses. The program supported the National Academy of Science Engineering and Medicine’s workshop “Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors” to encourage increased research on ME/CFS and related post-acute infectious syndromes. Currently the program is supporting the CDC Foundation’s project assisting patient-led organizations to establish and strengthen connections and raise awareness about infection-associated chronic illnesses through strategic collaboration.

CDC ME/CFS Information
Elizabeth R. Unger PhD MD on MEpedia

Board certified physician in Internal Medicine, Critical Care Medicine (Internal Medicine), and Pulmonary Disease. Assistant Professor at Yale School of Medicine; Director Pulmonary Vascular Program, Pulmonary, Critical Care and Sleep Medicine; Associate Program Director, Advanced Fellowship in Pulmonary Vascular Disease, Pulmonary, Critical Care, and Sleep Medicine.

Prof. Dr. Inderjit Singh at Yale School of Medicine

Internal medicine physician, practiced as a general internist for 10 years before starting the Fatigue Consultation Clinic in 2000. In 2015 she founded the Bateman Horne Center (BHC) with a mission to improve the lives of people with ME/CFS, fibromyalgia, and related conditions, through clinical care, education and research.

Author of the 2015 Institute of Medicine publication recommending new evidence-based clinical diagnostic criteria for ME/CFS. Most recently, Dr. Bateman is serving as co-chair of the NIH ME/CFS Research Roadmap Initiative, is a clinical advisor to the NIH RECOVER COVID Initiative Clinical Trials and serves on the Scientific Advisory Board of the Open Medicine Foundation (OMF).

BCH and OMF have jointly launched the Medical Education Resource Center (MERC) for multisystem chronic complex diseases. Her strong desire to research and advocate for ME/CFS is motivated by her having a family member with ME.

Bateman Horne Center Medical Education Resource Center

Liberty Hyde Bailey Professor in the Department of Molecular Biology & Genetics, Cornell University, and Director of the Cornell Center for Enervating NeuroImmune Disease in Ithaca, New York, US. In April 2021, Dr. Hanson was elected to the US National Academy of Sciences. Dr Hanson is also a member of the Working Group which offers their expertise and resources to the ME/CFS Collaborative Research Center at Stanford University. She is a member of the Solve ME/CFS Initiative (SMCI) Research Advisory Council (RAC). Notably, she is directing a National Institutes of Health (NIH) funded ME/CFS Collaborative Research Center recently established at Cornell following a competitive grant process. Over the next five years, the Center will work on three primary research projects and work cooperatively with a network of three other ME/CFS centers. Dr. Hanson’s strong desire to research and advocate for ME/CFS is motivated by her having a family member with ME.

Cornell Center for Enervating NeuroImmune Disease Prof. Dr. Maureen Hanson at Cornell University

Researcher and clinician with dual specialty in general practice and public health, in the UK, Canada and Brazil. Dr Luis Nacul has been researching ME/CFS internationally, and practicing as a general physician and in the field of ME/CFS and other complex chronic diseases. He is the Director of Complex Chronic Diseases Program (CCDP) Research Group in Canada, co-founder and Director of CureME Research Programme at the Clinical Research Department at the London School of Hygiene and Tropical Medicine in the UK. He is Clinical Associate Professor at the University of British Columbia and LSHTM. Dr. Nacul is a Board Member of the International Association of ME/CFS, and has contributed to various committees in the field of ME/CFS, such as EUROMENE, NICE Guidelines development committee on ME/CFS, ICanCME (as network executive) and UK ME/CFS Biobank Steering Committee.

Prof. Dr. Luis Nacul on ResearchGate
Prof. Dr. Luis Nacul on MEpedia

Faculty of Mathematics and Information Science, Warsaw University of Technology. Member of the Portuguese Society for Statistics, the Centre for Statistical Methodology and Malaria Centre from the LSHTM. He is a team member of the UK research group, CureME. Dr. Sepulveda is a member of the Working Group on Epidemiology of ME/CFS across Europe on behalf of the EUROMENE, a European Union not-for-profit research organization committed to tackling the cause and treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and represents Portugal in EUROMENE.

Prof. Dr. Nuno Sepulveda on ResearchGate Profile
Prof. Dr. Nuno Sepulveda on MEpedia

Associate Professor in the Department of Medicine at the Federal University of São Paulo (UNIFESP) in São Paulo Brazil. He leads the Pulmonary Hemodynamic Assessment Program in the Pulmonary Vascular Disease Service and Pulmonary Function and Exercise Physiology Unit, Division of Respiratory Diseases, Department of Medicine at the UNIFESP.

Prof. Dr. Rudolf Oliveira on ResearchGate
Prof. Dr. Rudolf Oliveira on Escavador

Chief Executive of UK-based charity, Action for M.E. for 10 years. Action for M.E. provides direct information and support, individual advocacy and healthcare services to children and adults with M.E. while also supporting families and professionals working with them. The Charity also works to raise the profile of ME and secure change for the future through its public affairs and research activity. Its ambitious Breakthrough-ME research strategy also includes the first Genetic Centre of Excellence, a virtual collaboration, which it has launched in partnership with Prof Chris Ponting, MRC Human genetics Unit, University of Edinburgh. Sonya is a Co-Investigator on the world’s largest ME study, DecodeME and Chairs its Management Group as well as a founding, Co-Chair of the World ME Alliance. Sonya also has a son with M.E. who became ill a year after she joined the Charity.

Action for M.E.
Action for M.E. Staff Team

Assistant Professor at Yale School of Medicine and Associate Director, Pulmonary Vascular Disease Program, Division of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, Yale-New Haven Hospital.

Yale Study Explains Post-COVID Exercise Intolerance
Prof. Dr. Phillip Joseph at Yale School of Medicine

Head of Advocacy and Communications for the World ME Alliance, and member of various steering groups including DecodeME, the ME/CFS Priority Setting Partnership and the UK governments ME Delivery Plan. The World ME Alliance is a collaboration between ME organizations across the world working as part of a coordinated, inclusive and worldwide advocacy movement, to encourage a coordinated and appropriate public health response to ME from the World Health Organization (WHO) and national policy changes among its Member States.

World ME Alliance
World ME Alliance – About Us

Internal Medicine physician and hematooncologist, ME/CFS doctor and Professor for Immunology and Acting Director of the Institute of Medical Immunology at the Charité Universitätsmedizin in Berlin, Germany. She is co-founder of the COST-funded European network for ME/CFS EUROMENE, the Charité Fatigue Centre, and the Post COVID Network Charité. In 2022, she was awarded the Federal Cross of Merit for her projects on ME/CFS. Her research focuses on chronic fatigue syndrome (ME/CFS), Post COVID Syndrome, and immunodeficiencies and she has published more than 200 peer-reviewed papers. Since 2020 she has received funding from the German Government for the joint research project IMMME (immune mechanisms of ME/CFS) for a German “ME/CFS patient registry and biobank”, for the interdisciplinary and intersectoral care study CFS CARE and the National Clinical Study Group, a clinical trial platform for ME/CFS and Post Covid.

Charité Fatigue Center
Post-COVID-Network of Charité
Prof. Dr. Carmen Scheibenbogen on MEpedia

Internal medicine and infectious disease specialist, treating patients with ME/CFS for over 20 years. Dr. Levine is a clinician for the Center for Enervating Neuroimmune Disease at Cornell University, New York and is a member of the Working Group which offers their expertise and resources to the ME/CFS Collaborative Research Center at Stanford University. Dr Levine was a reviewer for the 2015 report produced by the Institute of Medicine’s Committee on Diagnostic Criteria for Myalgic Encephalomyeliti/Chronic Fatigue Syndrome, served on the Chronic Fatigue Syndrome Advisory Committee (CFSAC) as a member and committee chair, advising the U.S. Department of Health and Human Services. She is a Member of the Sleep Working Group of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Common Data Element (CDE) Project sponsored by the National Institute of Neurological Disorders and Stroke and the Centers for Disease Control and Prevention.

Susan M. Levine, MD on Chronic Fatigue Initiative

The inception of Open Medicine Foundation (OMF) traces back to the personal journey of its founder, Linda Tannenbaum. As OMF’s President and CEO, Linda’s motivation was deeply personal; her daughter, at the age of 16, was struck by ME/CFS, a diagnosis that came without the prospect of diagnostic tests or viable treatments. Confronted with the painful reality of her daughter’s diminished quality of life, Linda was propelled into action. Her pursuit for answers revealed a stark void in collaborative and transparent research, as well as funding for ME/CFS and related chronic, complex diseases. Determined to bridge this gap, Linda established OMF in 2012, with a vision to catalyze large-scale research efforts aimed at creating diagnostic tools, effective treatments, and ultimately, prevention methodologies for these conditions. Linda’s professional background as a clinical laboratory scientist, holding a bacteriology degree from UCLA, and her experience managing a clinical laboratory for over 20 years, have all converged to fuel her current mission. With unwavering dedication, Linda Tannenbaum now channels her expertise and passion into spearheading the quest to find a cure for chronic complex diseases, enhance patient care, and restore the lives of millions affected by these conditions.

Linda Tannenbaum at OMF

Chief Medical Officer of Open Medicine Foundation (OMF) Director of the OMF ME/CFS Collaborative Research Center at Uppsala (Sweden) a Full Chair Professor in Analytical Chemistry and Neurochemistry in the Department of Chemistry at Uppsala University, Adjunct Professor in Pathology at the University of Utah School of Medicine (USA), and Distinguished Professor in Precision Medicine at Binzhou Medical University in Yantai (China). His group develops tools for screening and discovery of biomarkers in different diseases. Dr. Bergquist studies numerous conditions, including neurodegenerative disorders. His research into ME/CS is focused on characterizing the neuroimmunological aspects of the disease using proteomics and metabolomics, with a special interest in cerebrospinal fluid studies and autoantibodies.

Prof. Dr. Jonas Bergquist at OMF

Director of the Immuno-Metabolic Computational Center at Massachusetts General Hospital (MGH), Harvard Medical School. He also leads a Computational Genomics Group at Stanford Genome Technology Center (SGTC). His research is at the interface of computation, genomics, and medicine. A major bottleneck of genome medicine today is around data analysis, interpretation, and integration. His research interest is to develop approaches to address these challenges and to help translate genome technologies to better disease diagnosis, prevention, and therapeutics, especially in studies of human immune and metabolic diseases In collaboration with research at SGTC and Open Medicine Foundation (OMF), his lab has been analyzing the Severely Ill Patient Big Data Study and other studies on ME / CFS and comparing ME / CFS with other diseases. Dr. Xiao is a member of the OMF Scientific Advisory Board and Co-Director of the OMF funded Harvard ME / CFS Collaboration at the Harvard-Affiliated Hospitals.

Prof. Dr. Wenzhong Xiao at OMF

With 40 years of professional experience in Portugal and the US, António Vaz Carneiro is a Medical Doctor holding specialist degrees in Internal Medicine, Nephrology and Clinical Pharmacology.

He is a Retired Professor at the Faculty of Medicine, University of Lisbon (FMUL) where he directs the Institute for Evidence Based Healthcare.

He is a Clinical Researcher with special interest in the areas of secondary research (systematic reviews and meta-analyses), methodologies of translation of knowledge into practice, overutilization of health resources, applications of Artificial intelligence in Medicine and research in Precision Medicine/Big Data. Prof. Vaz Carneiro is the Head of Cochrane Portugal.

Specialist in Rheumatology and Director of the Rheumatology Department at Egas Moniz Hospital since 2006. He is a full professor at NOVA Medical School (NMS) and served as it’s dean from 2013 to 2021.

He is a full professor at the Faculty of Medical Sciences (FCM) of Universidade Nova de Lisboa (UNL) and served as director of FCM from 2013 to 2021.

He has authored and co-authored hundreds of scientific publications and is Principal Investigator in Rheumatology at the FCM´s CEDOC. He has received 92 scientific awards, including the BIAL Prize for Clinical Medicine 2008, the BIAL Grand Prize for Medicine 2016 and the Reuméritus Prize from the Portuguese Society of Rheumatology in 2010.

Cofounder of Millions Missing Aliança and ME/CFS Task Force coordinator in Myos. She has a PhD in public policy. Served as special assistant at the US Centers for Disease Control and Prevention (CDC) directing a national program of 10 academic centers of excellence in youth violence prevention.

Founding co-director of the Inter-American Coalition for Violence Prevention, which promoted a public health approach and coordination between WHO/PAHO, USAID, the World Bank, the Inter-American Development Bank, the CDC and UNESCO.

Elected Next Generation Fellow by the Rockefeller Foundation for her work in public hospitals, level 1 trauma centers and public health departments with victims of violence. Retired from the World Bank due to ME/CFS.

Sarra Al-Zayer received her bachelor’s degree in Biology and Society from Cornell University in 2022. She then joined Dr. David Systrom’s lab at the Brigham and Women’s Hospital in Boston as a Research Assistant.

She is involved in the development and execution of multiple research studies.

Over the past two years, her work culminated in several research abstracts and has presented at international conferences including the American Thoracic Society, European Respiratory Society, and National Institutes of Health.

Senior research coordinator for Dr. David Systrom at Brigham and Women’s Hospital in Boston, Massachusetts. She received her MSc. in Exercise Physiology from Loughborough University, UK in 2021 and soon joined Dr. Systrom’s team including his US$8 million study of limb skeletal muscle mitochondrial dysfunction.

Since then, she has presented their research focused on ME/CFS and Long Covid at domestic and international conferences hosted by American Thoracic Society, European Respiratory Society, Pulmonary Vascular Research Institute, and National Institutes of Health.

Starting in 2024, she will be the lead coordinator for Open Medicine Foundation’s LIFT clinical trial, a placebo-controlled, double-blinded research study investigating the effects of pyridostigmine and low-dose naltrexone in ME/CFS.

A Cardiologist and researcher dedicated to the care of heart failure and pulmonary arterial hypertension patients. His research interests encompass pulmonary circulation pathophysiology and the role of exercise as a diagnostic tool and as a treatment for cardiovascular diseases.

He is the coordinator of the Cardiovascular Research Group at the Unit for Multidisciplinary Research in Biomedicine (UMIB) part of the School of Medicine and Biomedical Sciences (ICBAS), University of Porto, where he also teaches.

He is passionate about the impact of evidence-based medicine, clinical research skills, and physiology knowledge on the quality of medical education and cardiovascular care. He authored more than 70 peer-reviewed papers and is actively involved with international collaborative research networks.

PhD candidate in Computational Biology, Centre of Statistics and its Applications and Institute of Molecular Medicine at the University of Lisbon, Portugal.

Muna Sidarus has a master in Medicinal Chemistry by Técnico (IST), Lisbon, Portugal. She has done research in several fields of Chemistry and worked in laboratory equipment sales from many perspectives, having lived in Portugal, France, the UK and Switzerland.

Nowadays, she is a 5th year Medical student at the Faculty of Medicine and Biomedical Sciences (Faculdade de Medicina e Ciências Biomédicas), Algarve University. She is interested in fibromyalgia and ME/CFS due to her personal and family experience.

She has volunteered with organizations for people with learning disabilities, palliative care and also Myos – National Association Against Fibromyalgia and Chronic Fatigue Syndrome.

She likes complex topics and multidisciplinary areas and thus has the intention to work at the interface between specialities, enabling the integration of information and the communication between health care professional who do not always use the same medical language and look at symptoms and diseases in a compartimentalized manner.

She joined the Myos ME/CFS Task Force in 2023, having been involved with the organization of this conference. At the beginning of 2024, she joined Myos’ elected managing board.

Portuguese and Danish, she has been diagnosed with ME/CFS in 1992 at Massachusetts General Hospital (Boston) and Northwick Park Hospital (UK).

Holds an MBA from Bristol University/Harvard University, speaks 5 languages, worked as an International Development/Investment Consultant, and is a qualified Mediator.

As a Member of Millions Missing Aliança, she has supported the organization of this conference.