Many events have been postponed or canceled due to COVID-19. We will update this page as more information is provided about the events. We will continue to monitor ME/CFS news and events and will update this page regularly.
ME/CFS Can Affect Anyone
Millions of people worldwide are affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Yet the causes, diagnostic markers, progression, and FDA-approved treatments remain unknown. The shared vision of the ME/CFS Collaborative Research Network (ME/CFSnet) is to encourage collaborative research in partnership with individuals and advocacy groups to understand the disease and develop better diagnosis and treatment.
NEWS
Largest ME/CFS Genetic Study Launches in the UK
June 23, 2020
DecodeME, a jointly funded study by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR), seeks to aid the development of diagnostic tests and targeted treatments for ME/CFS. The funded study of ME/CFS will be a genome-wide association study (or GWAS, pronounced "gee-was") – a very large genetic study that aims to uncover some of the biological roots of disease that will enroll 20,000 individuals with ME/CFS. The £3.2 million study was developed through a partnership between scientists and people with ME/CFS. The study begins September 2020 and will be led by Professor Chris Ponting from the MRC Human Genetics Unit at the University of Edinburgh. More information about the study and registration for the study by interested individuals in the UK is on the DecodeME website: https://www.decodeme.org.uk. Individuals outside the UK may also register their interest in the study (should more study participants be needed) and sign up for their newsletter.
Take Me ThereNEWS
Letter to the Editor of Metabolites
June 4, 2020
This letter to the editor is a follow-up to the January 2020, metabolomics paper in Metabolites by Dr. Arnaud Germain and Dr. Maureen Hanson.
“The latest worldwide prevalence rate projects that over 65 million patients suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)…”
The 65 million people with ME/CFS figure has garnered attention resulting in this Letter to the Editor. The key takeaway is that the prevalence of ME/CFS is likely much greater than the oft-cited figure of “20 million worldwide.”
Take Me ThereNEWS
Researchers Warn COVID-19 Could Cause Debilitating Long-Term Illness in Some Patients
May 30, 2020
This article highlights how COVID-19 can trigger lifelong illness for some patients.
Take Me ThereThese institutions are working together as the ME/CFS Research Network.
Visit the CDC to learn more about ME/CFS.
Collaboration Drives Progress
Investigators, health care providers, and advocates are collaborating across the Research Network to drive progress in understanding ME/CFS. Together, we can advance discoveries to improve the lives of members of the ME/CFS community.
Grants that fund MECFSnet are managed by the National Institutes of Health (NIH) National Institute of Allergy and Infectious Diseases and the National Institute of Neurological Disorders and Stroke. This website was supported by a grant from NIH, grant #U24-NS-105535.
Website design and development by RTI International. RTI is a registered trademark and trade name of Research Triangle Institute. The RTI logo is a registered trademark of Research Triangle Institute.
What is ME/CFS?
Myalgic Encephalomyelitis (ME), also referred to as Chronic Fatigue Syndrome (CFS), is a multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.