Investigating links between ME/CFS and long Covid
The ME Association, a charity which supports people living with ME (myalgic encephalomyelitis), also known as CFS (chronic fatigue syndrome) and Long Covid, 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 400,000¹ 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 million² adults and children in the UK who are affected by ME/CFS. There is currently no treatment or cure for either condition.
ME also known as CFS, 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.[REF)
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.
Professor Danny Altmann, from the Department of Immunology and Inflammation at Imperial, said: “There has been little research into the relationship between ME/CFS and Long Covid, which are both post-infectious, persistent conditions, with similar symptoms. We want to use the latest technology and samples provided by volunteers, to try and highlight the common immunological themes and pathways, hopefully informing the most promising therapeutic approaches.”
The hope for the scientists is that this initial research can provide more insight into the associations between ME/CFS and Long Covid and as a result, help pave the way for better scientific understanding to lead to improved treatment solutions in the future.
Professor Altmann continued: “Millions of people have had their lives destroyed by the disabilities that come with Long Covid and ME/CFS. We’re hoping that our work will make the underlying mechanisms of these conditions clearer and help to inform further clinical trials and therapeutics in this area.”
Dr Charles Shepherd, Honorary Medical Adviser at The ME Association, said: “Back in May 2020, close to the start of the Covid-19 pandemic, The ME Association became aware of an increasing number of people who were developing ME/CFS symptoms following a Covid-19 infection and the subsequent emergence of Long Covid.
“Since then, it has become apparent that there are important clinical and pathological overlaps between ME/CFS and Long Covid and that much of the research that has been carried out into the cause and treatment of Long Covid is also relevant to ME/CFS. So it makes sense to study both conditions in parallel and in detail – which is what the Rosetta Stone study will do.
“We are delighted that this research, which is the most comprehensive study into the two conditions to date, is being led by Professors Danny Altmann and Rosemary Boyton and colleagues at Imperial College London.
“We are also pleased that it will include a collaboration with Dr Jackie Cliff at Brunel, Professor Chris Ponting’s DecodeME team in Edinburgh and the UK ME/CFS Biobank at the London School of Hygiene and Tropical Medicine.”
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.