Genetic Study Offers New Hope for Millions With ME and Long COVID

A major new genetic study has identified more than 250 core genes associated with myalgic encephalomyelitis (ME), offering what researchers describe as the most detailed genetic analysis of the disease ever completed. The findings, released by precision medicine company PrecisionLife, illuminate the underlying biology of ME, reveal substantial overlap with long COVID, and point to dozens of opportunities for drug repurposing that could accelerate the development of targeted treatments.

ME and long COVID affect an estimated 400 million people worldwide, yet patients still face a landscape with no definitive diagnostic test and no approved cure. The newly published work could help shift that trajectory.

PrecisionLife scientists used their AI-led combinatorial analytics platform to examine genomic data from two DecodeME cohorts alongside the UK Biobank. The approach confirmed consistent genetic signals across all three datasets. In total, the analysis identified 7,555 variants linked to increased disease risk, including the eight variants recently highlighted by the DecodeME GWAS.

The findings reinforce that ME is driven by many different genes and involves at least four major biological pathways: neurological dysregulation, inflammation, cellular stress response, and calcium signaling. Researchers say this underscores the need for a more tailored approach to treatment, with therapies developed for specific biological subgroups rather than the disease as a whole.

Dr Steve Gardner, CEO of PrecisionLife, said: “These results reinforce that ME has a clear biological and genetic basis and is a complex multisystemic disease. ME is highly polygenic and heterogeneous, so no single drug will help everyone. Stratifying patients by the mechanisms that are driving their disease will be essential for predicting who will benefit from which therapies and for developing accurate diagnostic tests.”

The study also revealed a strong genetic relationship between ME and long COVID. Of 180 genes previously associated with long COVID, 76 were also linked to ME in DecodeME data. The overlap suggests that although the two conditions are not identical, they share biological pathways that may open the door to treatments that work for both.

To speed progress across the field, PrecisionLife has made the full list of identified SNPs and genes publicly available. The company hopes this will support academic researchers, clinicians, and drug developers as they pursue repurposing opportunities, investigate new targets, and design mechanism-based therapies.

Patient advocates welcomed the findings as a meaningful step forward after decades of limited progress. Sonya Chowdhury, CEO of Action for ME, said: “These findings offer further hope to people with ME around the world. For decades, people affected by ME have lacked recognition, access to proper diagnosis and effective treatments. PrecisionLife’s results represent a major step forward in understanding the biology of the disease and provide real opportunities for targeted therapies to move into clinical testing.”

Prof Chris Ponting of the University of Edinburgh, an investigator on the DecodeME study, described the results as an example of what becomes possible when large-scale datasets are shared with research partners. He said: “DecodeME was designed to reveal the complex genetics of ME by providing a dataset of the scale and quality required for robust discovery. PrecisionLife has shown how making such datasets available can quickly generate new insights into ME disease biology.”

For patients, the findings represent a source of validation and a signal that treatment avenues may finally be opening. Helen Baxter, patient advocate and PPI representative, said: “These results greatly enhance our understanding of the biology of ME and present opportunities for drug repurposing which affords hope to the millions of people living with ME and long COVID around the world.”

The work forms part of the LOCOME program, funded in part by Innovate UK and delivered through a collaboration between PrecisionLife, Action for ME, and the University of Edinburgh. The partners expressed deep gratitude to the tens of thousands of participants who contributed data to DecodeME, many while managing severe symptoms such as pain, fatigue, and cognitive impairment.