The ME/CFS Biomedical Partnership are asking for help. Sign up on the website, to indicate if you want to hear about the study, and whether you want to take part. The FAQs page answers many questions, under several topics - Science/Research; Recruitment/Taking Part; Funding; The Partnership; and Public & Patient Involvement.
ME/CFS Biomedical Partnership: Genetics and Biomarkers is a partnership of researchers, people with ME/CFS, carers and the public.
Early in 2020, the partnership will make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study.
The project will be led by Prof Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.
The study will analyse DNA from the saliva of 20,000 ME/CFS patients to see whether ME/CFS is partly genetic and if so, what causes it. The study should help us understand the disease and find treatments.
The ME/CFS Biomedical Partnership Patient and Public Involvement (PPI) Steering Group is made up of people representing groups or networks from the ME/CFS community, including Sonya Chowdhury of Action for ME (AfME), Dr Charles Shepherd of the ME Association (MEA), and the Countess of Mar of Forward-ME.
Find out more -
AfME and the MEA both recently gave further explanations, and the MEA January monthly survey asks - would you be willing to take part in research that will investigate the genetics of M.E.?
Two recent useful explanatory blogs, both with comments and responses -
• Trial By Error: The UK’s Proposed Genetics Study, By David Tuller, DrPH.
• Sign up! Your support could help win funding for a game-changing ME/CFS study, By Simon McGrath.
Further background information can be found from the AfME article “ME/CFS Biomedical Partnership”, plus the Forward-ME six page leaflet “The ME/CFS Biomedical Partnership: Genetics and Biomarkers Genome-wide association study: Questions & Answers”, and the MEA article “ME/CFS Biomedical Partnership PPI Steering Group Update”.
• Action for ME • DecodeME
• Forward ME • M.E. Association