The DecodeME team has just released the first results from the world’s largest ever genetic study of ME/CFS. Over 15,500 people with ME/CFS and more than 259,000 people without it took part.
This makes it the biggest and most detailed look so far at whether our DNA plays a role in this illness. You can read further at: https://institute-genetics-cancer.ed.ac.uk/decodeme.
What the study found
· Eight genetic “signals” were identified that are more common in people with ME/CFS.
· These signals are scattered across the genome, rather than sitting in one single gene.
· Many of them are linked to the immune system, the nervous system, and the way the body reacts to infections and pain.
· Importantly, no genetic links were found to depression or anxiety, helping separate ME/CFS from old psychiatric labels.
Why this matters
· Clear biological evidence: This shows ME/CFS has a genuine biological basis. It is not “all in the mind.”
· Matches lived experience: The findings line up with what patients have long reported—trouble after infections, issues with energy, sensitivity, pain, and brain function.
· Potential for treatment progress: Knowing where the genetic “hotspots” are gives researchers new targets. Existing drugs that act on these immune or nervous system pathways might be repurposed in the future.
· Momentum for more research: This landmark study demonstrates that ME/CFS deserves serious scientific funding and investigation.
What it doesn’t mean yet
· No test (yet): These genetic changes don’t allow for a simple diagnostic test right now. Many people without ME/CFS also carry them.
· No instant cure: Treatments will take time. This is a first step, not a finished solution.
Important considerations
· Self-reported diagnosis: Participants reported having ME/CFS themselves, rather than being clinically confirmed. This may blur the picture slightly.
· One population group: The study only included people of European descent. More diversity is needed to know if the same genetic signals show up in other groups.
· Sex differences still unclear: Even though ME/CFS is more common in women, the study did not identify a genetic reason for this.
· Long COVID overlap: Despite similarities between ME/CFS and Long COVID, no clear genetic overlap was found in this analysis—though more work is needed.
· Preprint stage: These results are out as a preprint (not yet peer-reviewed), so details could shift with further review.
What comes next
This study provides a powerful foundation. The data will now be shared with researchers worldwide, who can dig deeper into how these genes affect the body. This could lead to:
· Better understanding of disease mechanisms.
· More precise sub-grouping of patients.
· New ideas for treatments and, eventually, diagnostic tools.
In summary
The DecodeME results are a breakthrough moment. They confirm what the community has always known—that ME/CFS is a real, biomedical illness. They open new doors for research and give hope that treatments and tests may one day be developed. At the same time, much more work is needed to build on this foundation.