MCS Aware welcomes the release of the initial findings from the DecodeME DNA study, the largest genetic study in the world focused on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). These landmark results offer powerful, science-backed evidence that ME/CFS is not just “all in the mind”, but has a biological and genetic basis.
Led by Professor Chris Ponting at the University of Edinburgh, the DecodeME study involved 15,500 participants across the UK, making it the largest-ever genetic investigation into ME/CFS. Researchers identified eight specific areas of DNA that differ significantly in people with ME/CFS compared to those without the condition. These genetic signals strongly suggest that ME/CFS has an organic origin, moving the condition out of the realm of speculation and firmly into recognised medical science.
“This research finally legitimises ME/CFS as a genetic, biomedical illness,” says the DecodeME team. “It is a real, physical condition with a biological basis.”
The implications of this are life-changing. People with ME can now attend GP appointments with scientific proof that their condition is not psychological. This validation could help lead to more effective care, greater understanding among healthcare professionals, and, in time, new treatments.
The DecodeME project is a collaboration between the University of Edinburgh, leading ME charities, and people with ME/CFS themselves, with findings published on DecodeME’s website and covered by major media outlets including Channel 4 News and The Guardian.
At MCS Aware, this announcement holds particular significance. Around 80% of people with ME are female, and the majority of our members are women. In addition, many of our members experience Multiple Chemical Sensitivity (MCS) as a symptom of their ME, often making day-to-day life even more challenging. This study offers long-awaited recognition and reassurance to those who have had their experiences questioned or dismissed.
As more results are released and further research builds on this foundation, MCS Aware will continue to provide updates and advocate for those with ME/CFS and MCS.