£1.1m awarded to investigate links between ME/CFS and Long Covid

A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid.

The three-year study, which will be the largest of its kind and led by Imperial College London, will enable researchers to build an immunological profile of the two diseases.  

The hope is to understand more about the two conditions and the pathways to lead to better development of treatments. 

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. The condition can often be difficult to diagnose because of its overlap in symptoms to other conditions. 

Long Covid occurs after viral infection with SARS-CoV-2 and has many symptoms in common with ME/CFS. For many people – an estimated two million people in the UK and 400-millon globally – Long COVID has adversely affected their day-to-day life, the level of disability often incompatible with ongoing full-time employment or education. Researchers still don’t fully understand what happens in the immune system that causes lasting symptoms for some people and not others.  

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. Professor Danny Altmann Department of Immunology and Inflammation

Scientists at Imperial College London, with the help of funding from The ME Association, are undertaking a project to create a fuller picture of the immune profile of the two conditions with the specific aim of learning about underlying mechanisms through analysis of shared pathways between the conditions.

The Rosetta Stone study will map the immunological profile of ME/CFS and long COVID using samples from group of volunteers who have these conditions, in a direct side by side comparison of cohorts. 

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.”

Building a map of the immune system:

The Rosetta Stone study will examine 250 people with ME/CFS and 250 people with Long COVID, alongside matched healthy control groups.  

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, the researchers will use a range of techniques to build a clearer picture of the immunological profile of these conditions. They will examine stool, blood and saliva samples from volunteer participants, as well as using detailed information reported about their symptoms from a smartphone app, ELAROS. 

The samples will be analysed across a battery of technologies to generate datasets allowing the scientists to apply machine learning methods and discover shared patterns between the two conditions.

Uniting research on ME/CFS and Long Covid

New 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 infection (i.e. Long Covid) could meet the diagnostic criteria for ME/CFS. The ME Association therefore estimates that there could 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. 

The scientists hope this initial research can give us 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 Danny Altmann spoke about the potential impact of the research, saying: “Millions have had their lives destroyed by the disabilities that come with Long Covid and ME/CFS. We’re hoping that our work will make clearer the underlying mechanisms and 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. 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 Professor Danny Altmann and colleagues at Imperial College London. We are also pleased that it will include a collaboration with Professor Chris Ponting's DecodeME team in Edinburgh and the UK ME/CFS Biobank at the London School of Hygiene and Tropical Medicine.”