DecodeME is a very large research study that will analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and, if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments.

Most people develop ME/CFS after an infection. We’re expanding the study to include up to 5,000 DNA samples from people who have developed ME/CFS after a Covid-19 infection.

Sadly, the coronavirus pandemic has left hundreds of thousands of people in the UK with severe Long Covid. Researchers are trying to find out what causes the illness. In some cases, Long Covid is due to organ damage, but in many, it appears very similar to ME/CFS.

We estimate that there could be over 100,000 people who develop ME/CFS following Long Covid. Some have already been given that diagnosis. We need to understand if there are genetic differences between people who’ve been diagnosed with ME/CFS after Covid, and other ME/CFS patients.

If there are differences, that will indicate that different things cause ME/CFS after Covid from what causes the disease in other people. And that means it's likely that different treatments will be needed.

If there aren’t differences, then both groups are likely to have the same causes for their illness and will be likely to respond similarly to any treatments that are developed.

If you’ve been diagnosed by a health professional with ME/CFS after Covid, please join the research study. (You need to be over 16 and in the UK).

Need help with getting a ME/CFS diagnosis after Long Covid? Visit our list of support sources.