DecodeME - The world's largest ME/CFS study. The study should help us understand the disease and ultimately find treatments. DecodeME aims to find genetic causes of why people become ill with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).
The Worcestershire M.E. Social Group received a recent DecodeME newsletter, with initial DNA results.
The Worcestershire M.E. Social Group received a recent DecodeME newsletter, with initial DNA results.
We are delighted to share an important update on the DecodeME study. The initial DNA analysis is now complete, and we have made some exciting discoveries. Our results show that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. These findings confirm that genes contribute to someone’s chances of developing ME/CFS.
Eight genetic signals have been identified that are much more common in people with ME/CFS than the general population. The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease. The discoveries open the door for scientists to explore what’s going wrong in ME/CFS at a molecular level and are a major step forward in ME/CFS research.
Find out more about the results
This progress has only been possible thanks to everyone who took part in DecodeME.
We are extremely grateful for your continued support.
Warmest wishes, The DecodeME Team
Eight genetic signals have been identified that are much more common in people with ME/CFS than the general population. The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease. The discoveries open the door for scientists to explore what’s going wrong in ME/CFS at a molecular level and are a major step forward in ME/CFS research.
Find out more about the results
- Read more about our findings in our announcement blog
- Read our FAQs on the initial results
- Register for our upcoming webinar, where you will hear more about the results from the DecodeME management team, and will have the opportunity to ask questions
- Find the scientific preprint paper here
- Learn the science behind the findings.
This progress has only been possible thanks to everyone who took part in DecodeME.
We are extremely grateful for your continued support.
Warmest wishes, The DecodeME Team
Action for ME (AfME) announce
DecodeME initial DNA results announced
6 August 2025
The world's largest ME/CFS research study, DecodeME, has released the initial DNA results, following the initial analysis of 15,579 DNA samples!
What have they found? Your genes contribute to your chances of developing ME/CFS. The initial analysis has found that people with a diagnosis of ME/CFS have significant genetic differences in their DNA compared to the general population. These differences exist across the genome, and do not impact just one gene.
Eight genetic signals have been identified. These findings reflected causes, rather than effects, of ME/CFS because DNA does not change with ME/CFS onset. The signals discovered are involved in the immune and the nervous systems, pointing to immunological and neurological causes. At least two of these signals relate to the body's response to infection, while others point to the nervous system, one of which has previously been found in other research, in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.
Messages from the DecodeME team (included)
Andy Devereux-Cooke, DecodeME co-investigator (Patient and Public Involvement), DecodeME management team
Sonya Chowdhury, Action for ME Chief Executive, DecodeME management team
Professor Chris Ponting, DecodeME lead investigator, Edinburgh University
What's next?
Join the DecodeME team for a webinar on Thursday 14 August, where they will explain the initial results in more detail and answer your questions!
The DecodeME will continue to analyse their rich dataset and further findings will be published as soon as they become available. Other researchers will also be encouraged to use the DecodeME dataset so they can build on these important findings. Thank you so much to the tens of thousands of people affected by ME/CFS who helped make this groundbreaking research possible.
The ME Association publicises David Tuller’s interview with Prof Chris Ponting
David Tuller interviews Prof Chris Ponting about Decode ME Results.
August 11, 2025
David Tuller, DrPh, has recorded an interview with Prof Chris Ponting, lead researcher for Decode ME, which they have published on YouTube. In the interview, they cover how the project came about, the results of the study, and next steps for research into ME/CFS.
Watch the video: Interview with Professor Chris Ponting about the DecodeME results.
ME Research UK give explanations.
DeCodeME - Initial Results Published
6 August 2025
Initial results from DecodeME’s genetic study have been released.
The study is led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit, University of Edinburgh, and was funded by the Medical Research Council and the National Institute for Health Research.
DecodeME is a genome-wide association study (or GWAS) which aims to uncover some of the biological roots of ME/CFS. Examining DNA is fundamental as DNA remains unchanged by disease and so any DNA differences linked to the disease must be a cause of disease, not an effect. A GWAS is a relatively new technique that focuses on small differences in DNA between people. Identifying differences between people with ME/CFS and healthy controls (from UK biobank) would be a clue to what is going wrong in people with ME/CFS at a biological level. Specifically, it should help identify genes, biological molecules and types of cells that probably play a part in causing ME/CFS. 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.
What are the Initial Findings, Our findings suggest that both immunological and neurological processes are involved in the genetic risk of ME/CFS. Abstract of Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome
Your genes contribute to your chances of developing ME/CFS.
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. Lay Summary of pre-print
A pre-print paper has been released and will be submitted for peer review in the normal way and so the fimalised and published paper is wont to change over time. As Prof Ponting said in the Financial Times highly targetted studies are now needed to understand how the 8 identified signals are linked to ME/CFS.
As these changes occur mainly in the nervous and immune systems, it accords with the experiences of people with ME/CFS and research thought, namely that people with ME/CFS may struggle to clear infections and experience ongoing symptoms of pain, fatigue and illness from which other people recover. One such gene, OLFM4, codes for a protein called olfactomedin-4 that is involved in the body’s antimicrobial responses. Another, ZNFX1, is associated with responses to RNA viruses. A third highlighted gene, CA10, has been linked to chronic pain. A fourth, BXL4 (crucial for keeping mitochondria (cell batteries) functioning correctly) is identified as being under-expressed in some people with ME/CFS.
However, the study did not explain the genetic predisposition of women for ME/CFS but the team has, reportedly, yet to analyse the X and Y sex chromosomes. Further, the initial results do not shed light on the overlap between ME/CFS and Long COVID. As Professor Ponting reportedly stated “It’s very clear that the symptomology between long Covid and ME is highly similar.. Not for everyone but there are substantial similarities but as a geneticist the key question for me is are there overlapping genetic factors, and we haven’t found that in DeCode ME with the methods that we’ve employed.” [NB - the qualification ‘… with the methods that we’ve employed’] and continued (according to The Guardian) “One of the key things we’re doing is enabling others to use their different approaches to ask and answer the same question.”
What Next?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. Prof Chris Ponting DecodeME will hold a webinar on Thursday 14th August, where the results will be explained further but clear that the identification of 43 protein-coding genes (of which 29 looked especially promising) is a major advance in debunking the claims of a psychosocial basis of ME/CFS and also targetting research efforts. In particular, the findings around the immune system-related gene called RABGAP1L as a probable contributor to ME/CFS risk fits with the testimony of most people with the disease, who say that an initial infection, which often seemed mild, preceded the onset of their symptoms. Links with FBXL4 (mitochondria function) will also, surely, be an area to folllow-up.
It is already known that the NIH and MRC are pinning high hopes on the results as the ME/CFS Delivery Plan makes specific mention of building on DecodeME even though the results were not made public until 6th August 2025.
In particular, the July 2025 Delivery Plan narrated that
Press Coverage
The Guardian’s Science editor’s article -
Scientists find link between genes and ME/chronic fatigue syndrome,
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness. Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community.
Plus, the ME Association (MEA) give a summary and extracts from the Guardian article.
The Guardian: Scientists find link between genes and ME/CFS
August 7, 2025
“These provide the first robust evidence for genetic contributions to ME,” Ponting said. “There are many genetic variants that apply across the genome that predispose people to be diagnosed with ME.” Ian Sample, The Guardian
Summary - On the 6th of August, 2025, DecodeME published the pre-print of their DNA Study, which identified eight genetic signals which were different in those with ME/CFS to those without. You can read more about their findings with a summary from Dr Charles Shepherd, here.
The Guardian, alongside other major media outlets, have written about the findings of this pre-print paper, as below.
The MEA also list, ‘Further Media Coverage’.
• Action for ME • DecodeME
• M.E. Association • MERUK
• National Newspapers • Post COVID Syndrome (Long COVID)
• Research
DecodeME initial DNA results announced
6 August 2025
The world's largest ME/CFS research study, DecodeME, has released the initial DNA results, following the initial analysis of 15,579 DNA samples!
What have they found? Your genes contribute to your chances of developing ME/CFS. The initial analysis has found that people with a diagnosis of ME/CFS have significant genetic differences in their DNA compared to the general population. These differences exist across the genome, and do not impact just one gene.
Eight genetic signals have been identified. These findings reflected causes, rather than effects, of ME/CFS because DNA does not change with ME/CFS onset. The signals discovered are involved in the immune and the nervous systems, pointing to immunological and neurological causes. At least two of these signals relate to the body's response to infection, while others point to the nervous system, one of which has previously been found in other research, in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.
Messages from the DecodeME team (included)
Andy Devereux-Cooke, DecodeME co-investigator (Patient and Public Involvement), DecodeME management team
Sonya Chowdhury, Action for ME Chief Executive, DecodeME management team
Professor Chris Ponting, DecodeME lead investigator, Edinburgh University
What's next?
Join the DecodeME team for a webinar on Thursday 14 August, where they will explain the initial results in more detail and answer your questions!
The DecodeME will continue to analyse their rich dataset and further findings will be published as soon as they become available. Other researchers will also be encouraged to use the DecodeME dataset so they can build on these important findings. Thank you so much to the tens of thousands of people affected by ME/CFS who helped make this groundbreaking research possible.
The ME Association publicises David Tuller’s interview with Prof Chris Ponting
David Tuller interviews Prof Chris Ponting about Decode ME Results.
August 11, 2025
David Tuller, DrPh, has recorded an interview with Prof Chris Ponting, lead researcher for Decode ME, which they have published on YouTube. In the interview, they cover how the project came about, the results of the study, and next steps for research into ME/CFS.
Watch the video: Interview with Professor Chris Ponting about the DecodeME results.
ME Research UK give explanations.
DeCodeME - Initial Results Published
6 August 2025
Initial results from DecodeME’s genetic study have been released.
The study is led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit, University of Edinburgh, and was funded by the Medical Research Council and the National Institute for Health Research.
DecodeME is a genome-wide association study (or GWAS) which aims to uncover some of the biological roots of ME/CFS. Examining DNA is fundamental as DNA remains unchanged by disease and so any DNA differences linked to the disease must be a cause of disease, not an effect. A GWAS is a relatively new technique that focuses on small differences in DNA between people. Identifying differences between people with ME/CFS and healthy controls (from UK biobank) would be a clue to what is going wrong in people with ME/CFS at a biological level. Specifically, it should help identify genes, biological molecules and types of cells that probably play a part in causing ME/CFS. 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.
What are the Initial Findings, Our findings suggest that both immunological and neurological processes are involved in the genetic risk of ME/CFS. Abstract of Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome
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.
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. Lay Summary of pre-print
A pre-print paper has been released and will be submitted for peer review in the normal way and so the fimalised and published paper is wont to change over time. As Prof Ponting said in the Financial Times highly targetted studies are now needed to understand how the 8 identified signals are linked to ME/CFS.
As these changes occur mainly in the nervous and immune systems, it accords with the experiences of people with ME/CFS and research thought, namely that people with ME/CFS may struggle to clear infections and experience ongoing symptoms of pain, fatigue and illness from which other people recover. One such gene, OLFM4, codes for a protein called olfactomedin-4 that is involved in the body’s antimicrobial responses. Another, ZNFX1, is associated with responses to RNA viruses. A third highlighted gene, CA10, has been linked to chronic pain. A fourth, BXL4 (crucial for keeping mitochondria (cell batteries) functioning correctly) is identified as being under-expressed in some people with ME/CFS.
However, the study did not explain the genetic predisposition of women for ME/CFS but the team has, reportedly, yet to analyse the X and Y sex chromosomes. Further, the initial results do not shed light on the overlap between ME/CFS and Long COVID. As Professor Ponting reportedly stated “It’s very clear that the symptomology between long Covid and ME is highly similar.. Not for everyone but there are substantial similarities but as a geneticist the key question for me is are there overlapping genetic factors, and we haven’t found that in DeCode ME with the methods that we’ve employed.” [NB - the qualification ‘… with the methods that we’ve employed’] and continued (according to The Guardian) “One of the key things we’re doing is enabling others to use their different approaches to ask and answer the same question.”
What Next?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. Prof Chris Ponting DecodeME will hold a webinar on Thursday 14th August, where the results will be explained further but clear that the identification of 43 protein-coding genes (of which 29 looked especially promising) is a major advance in debunking the claims of a psychosocial basis of ME/CFS and also targetting research efforts. In particular, the findings around the immune system-related gene called RABGAP1L as a probable contributor to ME/CFS risk fits with the testimony of most people with the disease, who say that an initial infection, which often seemed mild, preceded the onset of their symptoms. Links with FBXL4 (mitochondria function) will also, surely, be an area to folllow-up.
It is already known that the NIH and MRC are pinning high hopes on the results as the ME/CFS Delivery Plan makes specific mention of building on DecodeME even though the results were not made public until 6th August 2025.
In particular, the July 2025 Delivery Plan narrated that
- The MRC had awarded £845,000 to PRIME, a new partnership award that aims to build a solid foundation for a permanent, enabling infrastructure for ME/CFS biomedical research by building on previous investment in the DecodeME study.
- The Department of Heath and Social Care, NIHR and MRC will host a showcase event later in 2025 for post-viral condition research (including ME/CFS) to discuss recent evidence, including the DeCodeME results.
- In extending DeCodeME funding in 2024, the NIHR ‘anticipate that DecodeME will empower future research by revealing genetic risk factors and facilitating future studies through the provision of an open-source data and sample base.’
Press Coverage
- Channel 4 news video – ME linked to your genetics – early study indicates via YouTube
- All 4 news – ME linked to your genetics – early study indicates
- Science – Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
- Daily Telegraph (paywall) – ME is a real illness, genetic study shows
- Financial Times (paywall) – Chronic fatigue patients have different genes, study finds
- The Standard – People with ME have key genetic differences to other people, study finds
- The Guardian – Scientists find link between genes and ME/chronic fatigue syndrome
- Daily Express – Groundbreaking genetic study sheds new light on causes of ME and chronic fatigue syndrome
- New Scientist – Key genetic differences found in people with chronic fatigue syndrome
- Daily Mail – Scientists FINALLY crack the mystery of chronic fatigue syndrome – major breakthrough reveals cause, sparks new hope for effective
The Guardian’s Science editor’s article -
Scientists find link between genes and ME/chronic fatigue syndrome,
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness. Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community.
Plus, the ME Association (MEA) give a summary and extracts from the Guardian article.
The Guardian: Scientists find link between genes and ME/CFS
August 7, 2025
“These provide the first robust evidence for genetic contributions to ME,” Ponting said. “There are many genetic variants that apply across the genome that predispose people to be diagnosed with ME.” Ian Sample, The Guardian
Summary - On the 6th of August, 2025, DecodeME published the pre-print of their DNA Study, which identified eight genetic signals which were different in those with ME/CFS to those without. You can read more about their findings with a summary from Dr Charles Shepherd, here.
The Guardian, alongside other major media outlets, have written about the findings of this pre-print paper, as below.
The MEA also list, ‘Further Media Coverage’.
• Action for ME • DecodeME
• M.E. Association • MERUK
• National Newspapers • Post COVID Syndrome (Long COVID)
• Research
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