The ME Association has awarded £1.1 million to researchers at Imperial College London to lead the new Rosetta Stone study.
The landmark study will be the largest research project of its kind and will enable top scientists in their field to conduct side-by-side cellular and molecular analyses of ME/CFS and Long Covid — offering an unprecedented look into what these conditions share and taking us closer to diagnostic biomarkers and treatment pathways.
Scientists will decode the immunological profile of ME/CFS and Long Covid using samples from groups of volunteers who have the conditions, in a direct side-by-side comparison of cohorts, with the specific aim of learning about underlying mechanisms through analysis of shared pathways between the conditions. The three-year study aims to unlock answers to the clinical and pathological overlaps that exist between ME/CFS and Long Covid.
ME/CFS and Long Covid are both multi-system, post-infectious conditions that are often persistent and very disabling, affecting more than two million people in the UK. Together they represent a major health and economic burden.
New research evidence estimates that around 400,000 people in the UK have ME/CFS. In addition, some research studies have now estimated that around 50% of people who are unable to recover from a Covid-19 infection (i.e. Long Covid) could meet the diagnostic criteria for ME/CFS. The ME Association therefore estimates that there could actually be more than one million adults and children in the UK who are affected by ME/CFS. There is currently no treatment or cure for either condition.
ME (myalgic encephalomyelitis), also known as CFS (chronic fatigue syndrome), is a multisystem disease – most often triggered by a viral or bacterial infection. Symptoms include profound fatigue, sleep disturbance, post-exertional malaise, cognitive difficulties and a range of other symptoms like pain, headaches, nausea and intolerance to light and noise.
Long Covid is recognised as another post-acute infection syndrome that is triggered by SARS-CoV-2 (the virus which causes Covid-19) and often includes symptoms that are the same as ME/CFS. It has been estimated that 2 million people in the UK have experienced Long Covid.
The Rosetta Stone study will examine 250 people with ME/CFS and 250 people with Long Covid, alongside matched healthy control groups. The significant size of the cohorts and the technology and methods being employed, mean increased confidence in the results.
Drawing also on the cohorts and the scientific expertise developed in other studies such as the NIHR WILCO Long Covid study at Imperial and the DecodeME study at the University of Edinburgh, researchers will use a range of techniques to build a clearer picture of the immunological profile of these conditions. Stool, blood and saliva samples will be analysed across a battery of technologies to generate datasets allowing the scientists to apply machine learning methods to discover shared molecular pathways between the two conditions.
The lead investigators at Imperial are Professors Danny Altmann and Rosemary Boyton.
For more than 40 years, The ME Association has invested in medical research that has helped increase understanding of ME/CFS and how best to manage it. The Rosetta Stone study is the largest ever single investment in biomedical research by any charity in this field.