Events

Using Data Analysis to Study ME/CFS and Long Covid

We expanded our Ramsay Grant Program in 2021 by launching the new Stupski Awards, which support research using data from the Registry. These webinars feature the 2021 Stupski Award recipients who will discuss their research and answer your questions.

Session I
December 16, 10-11am, PT
Please click here to register.

Efthymios [Themos] Kalafatis
Data Scientist/Machine Learning Engineer 

Kalafatis will discuss tracking his ME/CFS symptoms and analyzing the data and how that led to his Stupski-funded project, which applies powerful machine learning and text analysis methods to better understand symptoms, identify potential associations with treatments and life events and examine models of temporal patterns.

Kalafatis has over 20 years of data and text mining experience and holds a patent on a methodology that uses machine learning, network analysis and natural language processing for medical research. He has applied artificial intelligence techniques to research ME/CFS and natural language processing methods to analyze patient records. Themos has a BA from the University of Portsmouth and a MSc from the University of East Anglia.

Session II
February 15, 3pm PT
Please click here to register.

Jennifer Stone, PhD
Australian National University

Dr. Stone will discuss her Stupski-supported project, which uses advanced analytic methods to compare important demographic and clinical characteristics in people with ME/CFS to Long Covid controls and healthy controls. 

Dr. Stone recently received her PhD in clinical epidemiology from Australian National University. She has co-authored several journal articles using data and modeling to uncover causes of disease. Jennifer earned her BA and MPH from the University of Queensland.

Long Covid Webinar Series

Some people never recovered from Covid-19 and patient-led groups and academics are now studying Long Covid. How do we consolidate and share what we know so we can uncover causes and treatments more rapidly?

Collboration begins with conversation. Moderated by Sadie Whittaker, our chief scientific officer and a You + ME Registry architect, this three-part series brings together those collecting data on Long Covid to share preliminary findings and answer questions from our virtual audience.

Please click on the links for a recording of each session.

Session I with Dr. Nisreen Alwan and Dr. Natalie Lambert

Session II with Dr. Bhupesh Prusty

Session III with Dr. Carmen Scheibenbogen and Ms. Jill Jaycox

Session I–Long Covid: What Do We Know So Far?
Thursday, July 1, 2021
Please click here for recording.

Noon ET/9am PT

Dr. Nisreen Alwan 

Associate Professor of Public Health
University of Southampton; Long Covid Survivor

During the Covid-19 pandemic, Dr. Alwan contributed to the public health response by coordinating and leading several collective outputs from senior UK public health academics and focusing on the recognition and the quantification of morbidity from Covid-19. She was awarded a Most Excellent Order of the British Empire (MBE) for Services to Medicine and Public Health during the Covid-19 pandemic in the Queen’s New Year Honours 2021. She was named among other inspiring and influential women from around the world in the BBC 100 Women 2020 list.

Dr. Alwan obtained a membership in the Royal College of Physicians and earned an MPH at the University of Nottingham. She secured a Wellcome Trust Research Training Fellowship based at the University of Leeds and received an MSc in statistical epidemiology and a PhD in nutritional epidemiology.

Dr. Natalie Lambert

Associate Research Professor
Indiana University School of Medicine
Director of Research, SurvivorCorps

Dr. Lambert is an expert in Covid-19 patient symptoms and experiences. Her Covid-19 Health Lab works to understand the multitude of ways in which Covid-19 impacts patients’ health. The major focus of her lab is to 1) understand how underlying health factors affect Covid-19 health outcomes and 2) identify barriers patients experience when seeking out care for long-term or novel Covid-19 symptoms. Dr. Lambert utilizes large-scale natural language processing of data collected from online communities as well as surveys, interactive mapping and innovative health informatics techniques.

Dr. Lambert earned an MA and PhD from the University of Illinois and a BA from the University of Georgia.

Session II–Long Covid: What Do We Know So Far?
September 20, 2021
Please click here for recording.

Dr. Bhupesh Prusty
Principal Investigator
Institute for Virology and Immunobiology
University of Wurzburg

Prior to joining the University of Wurzburg, Dr. Prusty was a post-doctoral fellow at the German Cancer Research Institute. His accomplishments include receiving a Ramsay Grant from Solve M.E., the Koichi Yamanishi Young Investigator Award for Excellence in Basic Science and Best Trainee Award from the HHV-6 Foundation, the Shakuntala Amir Chand Prize from the Indian Council of Medical Research and the Science Writing Prize from the European Molecular Biology Organization.

Dr. Prusty’s current research explores how SARS-Cov-2 infection directly or indirectly reactivates latent viruses, like human herpes virus (HHV-6), which in turn attack the  nervous system and alter cells’ ability to produce energy.  

Dr. Prusty has a PhD in biosciences from Jamia Millia Islamia and an MSc and BA in zoology from Sambalpur University.

Session III–Long Covid: What Do We Know So Far?
October 19, 2021
1pm ET/10am PT
Please click here for recording.


Dr. Jillian Jaycox
Yale University School of Medicine

Dr. Carmen Scheibenbogen
Professor for Immunology Deputy Chair, Institute of Medical Immunology
University Hospital Charité

Dr. Scheibenbogen’s research focuses on the role of Epstein-Barr virus (EBV), particularly the characterization of EBV specific B cell and T cell response and the enhanced antibody response against EBV peptides ME versus healthy controls. She also leads the Biomarkers Working Group of EUROMENE, a non-profit organization committed to tackling the cause and treatment for ME.

Dr. Scheibenbogen received two Ramsay Awards from Solve M.E. A 2016 Ramsay Award, shared with Dr. Madlen Lobel, supported her research comparing autoimmune genetic and cellular traits in ME patients and a 2017 Ramsay Award, shared with Dr. Franziska Sotzny, for a study of immunometabolism of T cells and monocytes in ME.

She helped create the CellTrend Diagnostic Test, which may help identify a subset of 20-30% of all patients with ME, and she has published more than a dozen papers on ME. The most recent one [2021], on specific epigenetic and gene expression signatures in people with ME, can be found here.