Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.
It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many challenges to our work and the research of many others,
The Washington Post published an editorial last Saturday about how researchers are warning that COVID-19 may lead to long-term, debilitating illnesses, like myalgic encephalomyelitis (ME), in some patients. The editorial was written by former Washington Post reporter, Brian Vastag, and #MEAction co-founder, Beth Mazur, both of whom have ME. Many people infected with COVID-19 are
Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at least two weeks, revealing insights
Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have been reported world-wide. Governments are focused on treating patients acutely sick with COVID-19, the disease caused by the new virus SARS-CoV-2, and slowing the spread of the virus. However, a second crisis of long-term disability is
On April 13, NIH announced two new funding opportunities for ME/CFS research: PAR-20-165, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R01 Clinical Trials Not Allowed) PAR-20-168, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed) What is an R01? What is an R21? R01 and R21 are two common types of funding
Dr. Lucinda Bateman has treated over a thousand patients with chronic fatigue conditions since starting the Fatigue Consultation Clinic in 2000. She is the founder and Chief Medical Officer of the Bateman Horne Centre of Excellence (BHC) for ME/CFS and Fibromyalgia in Salt Lake City, Utah. In 2015, Dr. Bateman served on the Institute of
Mark and Marcie Zinn are once again conducting assessments and producing elaborate reports to help patients!
Additions and corrections Initially we stated that ICC requires three months before diagnosis; this was in error. ICC specifies that the disease can be diagnosed immediately. This has been corrected in the text and within the pdf comparing criteria. One reader pointed out a very useful misconception regarding different criteria for different purposes, which
Dane Cook is Professor of Kinesiology at the University of Wisconsin and Director of the March Center for Research in Exercise and Movement. He is also a member of the US. National Institute of Neurological Disorders and Stroke Council Working Group for ME/CFS Research Roster. How did you get involved with the area of ME research? My first