Scary facts in #DecodeME presentation (Ponting): Stigmatised illness. Symptoms not always believed. 75% of people with #ME/CFS say they have little or no access to healthcare. One in four patients are housebound or bedbound. Across Europe, it takes nearly seven years on average to get a diagnosis.

#DecodeME has the wrong paradigm. They look for differences, but a common variant like #rs5522 can be present in people with ME/CFS and also in "healthy" controls (where it drives chronic tissue inflammation, pain other downstream conditions). Their method was never going to find the answer.

The results from #DecodeME were revealed because of high statistical power from a large sample, allows finding weak associations and ruling out false positives. So many comparisons are made there is high risk of false positives which means the threshold for significance needs to be more stringent.

@cgatist.bsky.social Thankyou for all your work on #DecodeME! The preprint was one of the first things I read in 2025 after having not being able to read articles for several years. It took all week and was not easy but it is an example of what real hope looks like even if there is much work to do.