There doesn't appear to be any details yet. No registration form. Seems like just announcing the project. It mentions possible bio samples so probably US only, if it happens at all. We've been hearing about patient engagement for years, still an empty promise. Possible feel-good fluff (my cynicism is a bit high right now...).
This does not seem to be dedicated to ME/CFS patients in particular. I dont want to sound sceptical but why would I give out samples for an unknown cause? It is as bad as giving out your social security number or credit card information to strangers or signing a contract you have never read.
It seems to be about identifying gaps in medical care in a generic sense. It's a good idea in principle. But then given what the NIH does about gaps it already knows about, no good reason to be optimistic. Those things tend to be exercises in confirmation bias, where interpretation of the results is highly cherry-picked according to what the stakeholders want to be true.
General info about this US based program: https://allofus.nih.gov/ https://allofus.nih.gov/about https://allofus.nih.gov/about/about-all-us-research-program https://allofus.nih.gov/about/program-faq
+1 I think they erroneously think they can fix that simply with a lot of Big Data, but that’s only one piece—and doesn’t fix the process problems that exist at NIH. Also, it will take a long time and there are pressing needs now. Also, big data is only as good as the programmers. More information can reduce bias but programming can amplify bias, too. Hopefully they’re actively trying to reduce it. That being said it’s a possible way to generate data on morbidity and mortality in ME (even though I doubt they measure anything relevant to ME itself).
