Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

[Andy]

Apologies if this has been answered already: is there any hope of looking for genetic clues in early onset cases of the DecodeME data? Was age-of-onset data collected? (The thinking being that early-onset cases might have a stronger genetic predisposition, or something else distinct going on.)

Age of onset wasn't specifically collected, but date of birth and length of illness was. This isn't something that the remaining DecodeME team would be able to look at but if a researcher wanted to apply for the necessary data access then the process can be found here.

 

[Jonathan Edwards]

Apologies if this has been answered already: is there any hope of looking for genetic clues in early onset cases of the DecodeME data? Was age-of-onset data collected? (The thinking being that early-onset cases might have a stronger genetic predisposition, or something else distinct going on.)

I have discussed this with Chris. His problem is that the more post-hoc analyses of the DecodeME dataset that are done, the less statistical validity you have.

On the other hand, I would personally like to see someone do the necessary math (that is all you need) on data accessed from DecodeME and jut see what turns up. I think researchers are entitled to play around with the data as much as they like if that leads to some sharply focused questions for a further study of another cohort. If you have much more focused questions then the massive p value corrections needed for GWAS, and the consequent need for huge samples, do not arise.

 

[Jonathan Edwards]

I guess that there is another potential way to argue around the statistical Catch22 that comes with more analyses. You might be able to argue that if the 8 DNA segments identified are robust genetic markers then they ought to show up at least as strongly for very early onset cases, if not more strongly. The analysis could be seen as quality control!