Initial DecodeME DNA Results

06 August 2025

The DecodeME team is delighted to announce that the initial analysis of 15,579 DNA samples is complete, and we have important news to share.

Main findings from our analysis 

Your genes contribute to your chances of developing ME/CFS.

  • People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population. These lie in many places across the genome, and do not impact just one gene.
  • Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS.
  • The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease.
  • At least two of the signals relate to the body’s response to infection. Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.


Results Summary

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, disabling illness. It affects more females than males, and in most cases, starts after an infection. Little is known about the biological mechanisms that cause ME/CFS, despite many attempts to uncover them, and it has no effective treatments. To understand ME/CFS better, our study, DecodeME, compared the DNA of 15,579 people with ME/CFS with the DNA of 259,909 people without ME/CFS, all of European descent. DNA is a molecule that makes up our genes. Our genes make many different molecules called proteins, each of which does very specific things in the body. Finding variations in genes that differ between people with or without a disease can therefore point to what causes it. We found that people with ME/CFS are more likely to carry certain DNA differences in eight regions of their genome, and so these variants tell us about possible biological causes of ME/CFS. However, as these differences are also often found in people without ME/CFS they cannot cleanly separate who is at risk and who is not, and therefore do not provide a definitive test. Most of these regions contain several genes. Our methods did not allow us to conclusively locate the ones most relevant to ME/CFS in each region, but public data allowed us to pick out the most likely ones. Three of the most likely genes produce proteins that respond to an infection. Another likely gene is related to chronic pain. None are related to depression or anxiety. We found nothing to explain why more females than males get ME/CFS. Overall, DecodeME shows that ME/CFS is partly caused by genes related to the immune and nervous systems. 

Find the full preprint paper.  

We also have our FAQ page for further information. 

You can read more about the science behind the results.

 

Messages from the DecodeME team:  

Andy Devereux-Cooke,  DecodeME co-investigator (Patient and Public Involvement), DecodeME management team  

“DecodeME has revealed genetic results, which should prove game changing in the ME/CFS research field, and that also align with decades of patients reporting on their experiences. These results will not mean that a test or cure will be developed straight away, but they will lead to a greater understanding of ME/CFS. DecodeME also shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.” 

Sonya Chowdhury, CEO Action for ME, DecodeME management team  

“These results are ground-breaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets. This brings ME/CFS in line with other long-term diseases which have genetic components. We are shining a laser light on eight precise areas of DNA, so that highly focussed research can now be carried out. We hope this attracts researchers, drug developers, and proportionate funding to ME/CFS – and speeds up the discovery of treatments.”  

Professor Chris Ponting, DecodeME lead investigator, University of Edinburgh 

“This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people’s ME/CFS symptoms. DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research. With our participants we have built an extraordinarily rich DecodeME data set, to which we continue to offer data access. We especially welcome researchers whose work is relevant to the eight signals we have identified, and who could bring their expertise to bear in highly targeted studies that would produce further ME/CFS insights and ultimately treatments.” 

Researchers can find out more about our data access policy here. 

What’s next? 

  • Join us for a webinar on Thursday 14th August, where we will explain further what has been found and answer your questions.
     
  • The DecodeME team will continue analysing our rich dataset and will publish more findings as soon as they become available.
     
  • We also continue to encourage other researchers to make use of our dataset, so that they can build on what we have found. 

 

A final word of thanks 

This research would not exist without the tens of thousands of people with ME/CFS who took part in DecodeME, often whilst experiencing pain, fatigue, and brain fog. 

Thank you for making these discoveries possible. Useful links 

 

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