Published: 11 August 2025
This study provides strong scientific evidence that ME/CFS has a genuine biological basis, on a large scale.
Thanks to the identification of genetic signals, this research offers those affected a hopeful foundation for future diagnosis and treatments.
Why is this study so important and exciting?
The UK DecodeME study is the largest ever genetic study of ME/CFS. The study analysed DNA from approximately 15,500 individuals with ME/CFS and approximately 250,000 without. Its scale provides a level of legitimacy that smaller, previous studies lacked.
Biological validation: legitimacy and hope for patients
These findings affirm that ME/CFS has a genuine biological basis, not a psychological origin. It will help to reduce stigma and provide credibility to patients’ experiences in medical, social and other settings.
Eight genetic regions of DNA affected
Researchers identified eight regions of DNA that show significant differences between individuals with ME/CFS and healthy controls. This provides the first strong evidence that specific gene variants can increase the risk of developing ME/CFS.
Of these 8 regions, most are involved in immune response and nervous system processes, such as chronic pain and brain function—echoing symptoms frequently reported in ME/CFS.
Predisposition doesn’t guarantee illness
Importantly, carrying these gene variants does not mean someone will develop ME/CFS—they may simply increase the risk. Environmental triggers (such as infections) are still likely needed to initiate illness in those with the genes.
Mental health
Researchers also examined some genes associated with depression and anxiety and found that these were not associated with ME/CFS. This is important because ME/CFS is often misdiagnosed as depression or anxiety.
FAQs
Is ME/CFS hereditary?
This is the first study to definitively show that heritable, genetic variants may contribute to the risk of developing ME/CFS.
What are the implications of this research for long COVID?
While this study didn’t focus on long COVID specifically, other research shows that 50% of people with long COVID meet the diagnostic criteria for ME/CFS; these findings may also have implications for many people living with long COVID.
Why are more women affected than men?
We don’t know, yet. Studies have shown that women are often more impacted by immune conditions than men, and this study shows that ME/CFS affects the immune system.
What does this mean for a biomarker?
Identifying genes associated with ME/CFS offers a clear direction for designing follow-up studies, clinical trials, and biomarker research. While this study does not identify a specific biomarker(s), it helps researchers narrow their focus and suggests that more than one biomarker(s) may be involved.
What does this mean for drugs/treatments?
By discovering genetic regions that may be linked to ME/CFS, these findings guide researchers to biological pathways that drug developers aim to target.
How can I contribute to research about ME/CFS?
Sign up to the AusME Registry and Biobank!
Research such as this would not have been possible without the blood samples and data from people living with ME/CFS and healthy individuals, plus adequately funded, skilled researchers who designed and completed the study.
Emerge Australia manages Australia’s largest ME/CFS and long COVID registry and biobank, ‘the AusME’, and we are looking for more people to join – today!