What (maybe home-based) useful new research could be done using the DecodeME cohort?

[Kitty]

I think that any continuation would need to think of how to keep those flagship aspects/that control and transparency/privacy etc in place

Yep, absolutely. The PI would still be the lead, though, and would need to write it up at the end anyway. I imagine that would be covered by the original grant, as it's a big job that gobbles up a lot of time.

 

[Cinders66]

One pretty easy and useful project would be to recontact people in say 3 years, 5 years and then 10 years (or similar) to understand more about recovery rates. There might be some bias w.r.t. certain groups being more likely to respond etc but that'd be something that would require close to no work.

I’m reminded of the m.e observatory work with the severely affected in the 2000s. People were just followed up to see outcomes but nothing else was done to help the community. I understand need for checks but In the context of virtually no other research, this type of thing in my opinion is unethical, we aren’t lab rats& most people will want to take treatments as they come up and finding treatments, for most, is the priority, people want to feel less ill and function more and have better lives. so as human tests they won’t be available for “natural course” studies.