Speakers
António Vaz Carneiro
Betsy Keller
Carmen Scheibenbogen
Carolina Santos
Danilo Buonsenso
David Systrom
Eliana Lacerda
Germano de Sousa
Jaime Branco
João Malato
João Carlos Winck
Joan Serra Hoffman
Johanna Squires
Leticia Soares
Linda Tannenbaum
Luis Nacul
Malena Locci Marafanti
Michael VanElzakker
Nancy Klimas
Nuno Sepúlveda
Resia Pretorius
Rob Wüst
Rudolf Oliveira
Susan Levine
António Vaz Carneiro
With 40 years of professional experience in Portugal and the United States of America, António Vaz Carneiro is a Physician specializing in Internal Medicine, Nephrology and Clinical Pharmacology, and is also a Professor Emeritus at the Faculty of Medicine of the University of Lisbon, where he chairs 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), as well as methodologies for translating knowledge into practice, overuse of health resources, applications of Artificial Intelligence in Medicine and research in Precision Medicine/Big Data. He is also the Director of Cochrane Portugal.
Betsy Keller
Professor (retired), Department of Exercise Science and Athletic Training at Ithaca College in Ithaca, New York. Since 2003, she has used a 2-day cardiopulmonary exercise test protocol to provide objective assessment of functional capacity and recovery following exertion in persons with fatiguing illnesses. She served on the Institute of Medicine (National Academy of Medicine) committee to identify clinical criteria for the diagnosis of ME/CFS and has given numerous scientific and invited presentations on fatiguing illnesses nationally and internationally.
She was the Co-Coordinator of the Clinical Core for the 2017 5-year NIH-funded Collaborative Research Center to Study ME/CFS at Cornell University. She is a Fellow of the American College of Sports Medicine, Past-President of the Mid-Atlantic Regional Chapter of American College of Sports Medicine, past member of the Board of Trustees of the American College of Sports Medicine, and former department chair.
Foi Co-Coordenadora do Núcleo Clínico do Centro de Investigação Colaborativa para o Estudo da EM/SFC na Universidade de Cornell, financiado pelo NIH, com a duração de 5 anos. É membro do American College of Sports Medicine, ex-presidente do Mid-Atlantic Regional Chapter of American College of Sports Medicine, membro do Board of Trustees of the American College of Sports Medicine e antiga presidente de departamento.
Carmen Scheibenbogen
A specialist in Internal Medicine and Haemato-oncology, she provides ME/CFS and LC consultations. She is a Professor of Immunology and interim/deputy director of the Institute of Medical Immunology at the Charité University of Medicine in Berlin, Germany, and co-founded the European Network for ME/CFS, EUROMENE, funded by the European Cooperation in Science and Technology (COST), the Charité Fatigue Centre and the Charité Post-COVID Network.
In 2022, she received the Federal Cross of Merit for her projects in the field of ME/CFS. Her research focuses on ME/CFS, Post-COVID Syndrome, and immunodeficiencies, and she has published over 200 peer-reviewed scientific articles. Since 2020, she has received funding from the German Government for, among others: the joint research project on immune mechanisms of ME/CFS (IMMME) which aims to create a German “ME/CFS patient registry and biobank”; for the study of interdisciplinary and intersectoral care CFS CARE; and the National Clinical Trials Group, a clinical trials platform for ME/CFS and Long COVID.
Carolina Santos
Aliança Millions Missing, Coordenadora do Diretório Nacional de Profissionais de Saúde em EM e LC, e estudante do 2º ano de medicina na Universidade do Algarve (MIM-UALG). Enfermeira desde 2022 no Hospital da Luz em Lisboa.
With a history of volunteering, she was part of the NGO GASTagus for about 2 years, where she trained young people to participate actively, critically, and consciously in society and promoted and participated in national volunteering projects with vulnerable social groups, namely homeless people. Member of the Order of Nurses.
Danilo Buonsenso
Pediatrician at Gemelli University Hospital in Rome and member of the research committee of the Global Health Research Institute of Catholic University of Rome, Italy. He has a PhD in Public Health and Molecular Sciences, and a post-graduate diploma and Msc in pediatric infectious diseases at Oxford University.
He is actively involved in several national and international studies and societies in the field of pediatric infectious diseases, specifically in the field of long covid in children, where he has significantly contributed to advance current knowledge.
David Systrom
Dr. David Systrom is a 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, is Chairman of the NIH ME/CFS Research Roadmap Working Group of Council for the Circulation webinar, 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, AHA, 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 $8 million study of limb skeletal muscle mitochondrial dysfunction and completed the first-ever randomized clinical trial of pyridostigmine, both in ME/CFS.
Eliana Lacerda
Assistant Professor (Clinical) at the London School of Hygiene and Tropical Medicine (LSHTM), specialising in Public Health, an MSc in Occupational Health, and a PhD in Environmental Health. She is one of the co-founders of the CureME research team dedicated to research in ME/CFS at LSHTM and co-author of the project to create a UK ME/CFS biobank (UKMEB), being the clinical director of this venture, which is the first European research institution dedicated to improving clinical research in ME/CFS.
Previously Vice-President-elect of EUROMENE (European Network for ME/CFS), a network founded by the European Cooperation in Science and Technology (COST) that brought together twenty-two European countries to stimulate research and healthcare provision for people with ME/CFS. She was co-author of three of the four publications of recommendations resulting from the work of this network.
Germano de Sousa
A specialist in Clinical Pathology, Professor and Director of the College of Postgraduate Studies at the Atlantic University, Director of the Clinical Pathology Service at the Fernando Fonseca Hospital, Advisor to the National Council of Ethics for Life Sciences, President of the Portuguese Society of Clinical Chemistry and a member of the New York Academy of Sciences.
He was an Associate Professor at the Faculty of Medical Sciences for 20 years, where he founded the Master's Degree in Chemical Pathology and was responsible for graduate studies. He is Director of the Clinical Pathology Services and has been President of the Portuguese Society of Clinical Pathology, the Portuguese Society of Osteoporosis and Metabolic Diseases and the National Association of Clinical Laboratories. He was also President of the Portuguese Medical Association from January 1999 to February 2005, elected for three terms.
Jaime Branco
Specialist in Rheumatology and Director of the Rheumatology Service at Hospital Egas Moniz since 2006. He is a full professor at NOVA Medical School (NMS) and was rector from 2013 to 2021. He is a full professor at the Faculty of Medical Sciences (FCM) of the Universidade Nova de Lisboa (UNL) and served as director of the FCM from 2013 to 2021.
He is the author and co-author of hundreds of scientific publications and is a Principal Investigator in Rheumatology at CEDOC of FCM. 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 of the Portuguese Society of Rheumatology in 2010.
João Malato
João Malato Postdoctoral researcher at the Gulbenkian Institute for Molecular Medicine, in biostatistics, computational biology, and the analysis of large-scale epidemiological datasets. His research interests encompass the study of the most vulnerable communities to viruses, and the characterisation of diseases with complex diagnoses, such as ME/CFS and Long Covid, two overlapping multifactorial illnesses without biomarkers and featuring heterogeneous affected populations.
João is part of the EU-funded consortium END-VOC (https://endvoc.eu/) focusing on supporting the global response to COVID-19 and future pandemics. João is a member of the Portuguese Statistical Society (SPE) and a PhD member of the Centre of Statistics and its Applications, University of Lisbon (CEAUL). He holds a PhD in Biomedicine and Computational Biology.
João Carlos Winck
Full Professor of Pulmonology, Cardiovascular R& D Centre at the Faculty of Medicine of the University of Porto. Coordinator of Pulmonology Unit, Long COVID/Chronic Fatigue Clinic, Sleep and Ventilation Unit/Coordenador da Unidade de Pneumologia, Consulta de Fadiga Crónica/COVID Longa, Unidade de Sono e Ventilação, Instituto CUF Porto, Portugal.
Joan Serra Hoffman
Co-founder of Aliança Millions Missing with over 30 years of experience bridging the gap between research, policy, and practice, and promoting evidence-informed approaches to address complex health and social challenges. She served as a special assistant at the U.S. 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, World Bank, Inter-American Development Bank, CDC and UNESCO. Elected a 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.
Johanna Squires
Senior research coordinator for Dr. David Systrom at Brigham and Women’s Hospital in Boston. She received her master’s degree in exercise physiology from Loughborough University in the UK in 2021 and quickly joined Dr. Systrom’s team and their $8 million study of mitochondrial dysfunction in limb muscles. Since then, she has presented research focused on ME/CFS and Long COVID at local and international conferences organized by the American Thoracic Society, the European Respiratory Society, the Pulmonary Vascular Research Institute, and the National Institutes of Health (NIH) in the United States. Starting in 2024, she will be the lead coordinator for the Open Medicine Foundation’s LIFT clinical trial, a double-blind, placebo-controlled study investigating the effects of low-dose pyridostigmine and naltrexone in ME/CFS.
Leticia Soares
Dr. Letícia Soares is a broadly trained biologist with a background in infectious disease ecology, evolution, and epidemiology. She co-leads Patient-Led Research Collaborative where she leads research projects and provides patient-centered expertise on studies conducted by external partners in academia, industry, and governmental agencies. She has been living with Long COVID since April 2020.
Linda Tannenbaum
Founder and CEO/President of the Open Medicine Foundation (OMF). As president and CEO of OMF, her efforts are dedicated to funding and promoting research into ME/CFS and related chronic complex diseases.
The beginnings of the Open Medicine Foundation (OMF) are intertwined with the personal journey of its founder, Linda Tannenbaum. As President and CEO of OMF, her motivations were deeply personal, given that her daughter was diagnosed with ME/CFS at age 16 without the aid of diagnostic tests or viable treatments. Faced with the harsh reality of her daughter’s diminished quality of life, Linda took action. Linda created OMF in 2012 with the vision of catalyzing large-scale research efforts to develop diagnostic tools, effective treatments and, ultimately, prevention methods for these diseases.
Her professional background as a clinical laboratory scientist, with a degree in bacteriology from UCLA, as well as her experience managing a clinical laboratory for over 20 years, have converged to support her current mission. With unwavering dedication, she now brings her experience and passion to leadership in the quest to find cures for complex chronic diseases, improve patient care, and restore the lives of millions of people affected by these diseases.
Luis Nacul
He is a researcher and clinician specialising in General and Family Medicine and Public Health in the UK, Canada and Brazil. He has conducted international research in ME/CFS and has practiced as a family physician in ME/CFS and other complex chronic diseases. He is the former Director of the Complex Chronic Diseases Programme (CCDP) Research Group in Canada and co-founder and Director of the CureME research programme in the Department of Clinical Research at the London School of Hygiene and Tropical Medicine (LSHTM). He is an Assistant Professor (Clinical) at the University of British Columbia (BCU) and LSHTM. He is also an advisory member of the International Association of ME/CFS (IACFSME), and has contributed to several committees in the field of ME/CFS, such as EUROMENE, ICanCME (as network manager), the UK National Institute for Health and Care Excellence (NICE) ME/CFS Recommendations/Standards Development Committee and the UK ME/CFS Biobank Steering Committee.
Malena Locci Marafanti
Aliança Millions Missing. Former dental surgeon, specialist in orthodontics, facial orthopedics, orofacial pain and temporomandibular disorders, and former employee of the São Paulo State Health Department, as a health surveillance inspector and inspector at INSS hospitals. Malena taught orthodontics and functional jaw orthopedics in the 3rd and 4th years of dentistry, as well as teaching on the specialization course in orthodontics and facial orthopedics. She has been the administrator of WhatsApp groups to support patients with Myalgic Encephalomyelitis in Brazil since 2018, the administrator of the Facebook group Portugal/Brazil since 2022 and the Post-COVID patient group since 2024. Malena also co-founded and runs the ME/CFS and LC support group in Portugal. She has had ME/CFS since January 2000.
Michael Vanelzakker
Michael VanElzakker is a neuroscientist at Massachusetts General Hospital and Harvard Medical School, an instructor at Tufts University, and co-founder of the PolyBio Research Foundation.
His lab's research program is focused on the neuroimaging of infection-associated chronic illness, and he has a particular interest in advancing methods for pathogen detection.
Nancy Klimas
Director, Institute for Neuro-lmmune Medicine Professor and Chair, Department of Clinical Immunology, Assistant Dean of Research, Dr. Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University Director, Environmental Medicine Research and Clinical Program Miami VA Medical Center, Professor Emerita, University of Miami, School of Medicine.
Nuno Sepúlveda
Nuno is an Assistant Professor of Biostatistics and Clinical Trials of the Faculty of Mathematics and Information Science of the Warsaw University of Technology. He is a long-standing colaborator of the CEAUL – Centre for Statistics and its Applications of the University of Lisbon. He currently leads the Biometrical Section of the Portuguese Statistical Society. In recent years he received funding from the British charity ME Research UK and Polish National Agency for Academic Exchange (NAWA) to study the role of antiviral antibodies on the pathogenesis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. He also represented Portugal in the European network EUROMENE, where he integrated its executive board and the working group dedicated to the study of ME/CFS epidemiology in Europe.
Resia Pretorius
Resia Pretorius is a Distinguished Research Professor in the Physiological Sciences Department, Faculty of Science, Stellenbosch University, South Africa. She is Director of BioCODE Technologies www.biocode.co.za
Her overarching research theme is: Blood coagulation, circulating inflammatory markers and how these play a role in inflammatory conditions like Type 2 diabetes, Rheumatoid Arthritis, Psoriases and neuro-inflammatory conditions like Parkinson's disease and Alzheimer's disease. I am also studying coagulation in both acute COVID-19 and Long COVID/PASC. Follow the links on the images below to download my papers. Etheresia Pretorius
Rob Wüst
Assistant-professor at the Faculty of Behavioural and Movement Sciences at the Vrije Universiteit Amsterdam. His research group investigates skeletal and cardiac muscle metabolism and function. His recent interest include skeletal muscle adaptations after bed rest, in collaboration with astronauts from ESA and NASA and after acute and chronic inflammation. Recent work focuses on skeletal muscle abnormalities and exercise responses in patients with diabetes and Long COVID, which has led to a lot of international media attention. To better understand how muscle metabolism changes under different conditions, muscle biopsies from humans, mouse models, immunofluorescence and electron microscopy, and various cellular and molecular techniques are used. The research is funded by ZonMw, and various European and American (patient) organisations for diabetes, Long COVID and ME/CFS.
Rudolf Oliveira
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 of the Pulmonary Vascular Diseases Service and the Pulmonary Function and Exercise Physiology Unit of the Respiratory Diseases Division of the Department of Medicine at UNIFESP.
Susan Levine
An internal medicine and infectious disease physician, she has been treating patients with ME/CFS for nearly 20 years. She is a physician at the Center for Enervating Neuroimmune Disease at Cornell University in New York, and is a member of a working group that provides expertise and resources to the Stanford University Center for Collaborative Research in ME/CFS. She was a reviewer of the 2015 report produced by the Institute of Medicine (IOM) Committee on Diagnostic Criteria for ME/CFS, and has served on the Chronic Fatigue Syndrome Advisory Committee (CFSAC) as a member and chair, advising the U.S. Department of Health and Human Services (HHS). She is a member of the Sleep Working Group of the Common Data Project (CDE) for ME/CFS sponsored by the National Institute of Neurological Disorders and Stroke (NINDS) and the Centers for Disease Control and Prevention (CDC).