Institute of Genetics and Cancer

LOCOME project awarded Innovate UK grant to improve diagnosis and treatment of ME/CFS and Long COVID

The MRC Human Genetics Unit are collaborating with PrecisionLife and Action for M.E. in an innovative precision medicine project providing hope to millions in the UK: December 2023

Woman with the condition ME/CFD

The MRC Human Genetics Unit at the Institute of Genetics and Cancer, leading computational biology company PrecisionLife and charity Action for M.E. have been awarded a £622,000 grant by Innovate UK's Advancing Precision Medicine programme to improve diagnosis and treatment for the 2 million people in the UK affected by ME/CFS and long COVID.

The LOCOME (LOng COVID and Myalgic Encephalomyelitis diagnostics and stratification) project will extend previous analyses to include deeper multimodal data for a wider group of patients from long COVID datasets and the world's largest study of ME/CFS - the DecodeME partnership driven by Action for M.E. and the MRC Human Genetics Unit.

The MRC Human Genetics Unit team, led by Professor Chris Ponting, has been working with people with experience of ME/CFS and long COVID for several years. Their key role in the project will be to facilitate secure access to data volunteered by participants of the DecodeME study.

In co-production with people living with these conditions, the team will also help to design a potential clinical trial and conduct genetic analysis that would seek to assess the accuracy and clinical utility of diagnostic or prognostic tools identified by LOCOME.

The DecodeME study has already explored four robust phenotypic sub-types within its large cohort, each characterised by comorbidities and symptoms. The team will deliver ME/CFS and long COVID phenotypic strata to the LOCOME project.

PrecisionLife will use its precision medicine and mechanistic patient stratification approach to identify the factors driving disease in different patient subgroups through combinatorial analysis of the DecodeME data.

The insights and biomarkers that this generates will be used to create the first predictive diagnostic tools to rapidly triage people presenting with potential ME/CFS or long COVID symptoms and identify novel repurposing opportunities to accelerate access to disease modifying treatments for patients.

ME/CFS and long COVID come at a high cost to the people living with these conditions, the economy, and the NHS, yet we know less about their molecular causes and how to treat them effectively than we do about many rarer and less disabling diseases. By injecting badly needed robust genetic evidence into these research fields, and by improving the wider perception of research in these areas, we hope to encourage skilled investigators to apply their cross-disciplinary expertise to address future challenges in ME/CFS and long COVID research. The LOCOME project should provide valuable new insights from genetic data on what is going wrong in these devastating diseases.

Professor Chris PontingChair of Medical Bioinformatics, MRC Human Genetics Unit

LOCOME will demonstrate a powerful new ability to generate clinically useful disease insights from patient datasets that can be applied in a rapid and cost-efficient manner in healthcare settings to improve diagnosis and treatment of the most challenging and costly diseases which have huge unmet medical need. Upon demonstrating success for ME/CFS and long COVID patients, we hope to also apply this precision medicine approach to multiple diseases of aging in respiratory, dementia, autoimmune, and metabolic diseases to benefit millions more people.

Steve GardnerChief Executive Officer, PrecisionLife

We are delighted to partner with PrecisionLife, through the Genetic Centre of Excellence that we are establishing with the University of Edinburgh. People with M.E. deserve greater investment in research to help identify a diagnostic test and treatments and this is another step on that journey. By working together, we aim to accelerate research into personalised diagnosis and treatment.

Sonya ChowdhuryChief Executive, Action for M.E.

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