Another fascinating point is that many people seem to be able to pinpoint exactly when it happened, to the minute. This makes me think of how MS flare-ups happen too.
(Obviously this is not how it happens for progressive MS but data would capture which populations had which results.)
I fanatsize about a portable home device that could visualize what exactly happened at and right before that moment when people say their benefits stopped or symptoms flare. Or -- it woould be far too expensive? -- keeping a select group of people under constant monioring to see what is happening, teasing out the different factors for different groups.
It makes me think of the cardiac event monitors that people wear to analyze arrythmia. You record the ecg for the period just before a person feels wrong and then for a period right afterward. You might wear an event monitor long enough to get a good sampling. (Or some people have continuous 24-hour monitoring; depends on the situation.) The recordings get analyzed so what triggered the arrythmias can be determined, since vastly different things can trigger similar symptoms.
Maybe not a correct analogy, but what if you could have this type of close monitoring for some people? Maybe the most at-risk people because they're having a repeat procedure? Or if most people kept an exquisitely detailed journal in the first place.
edited -- sorry, there was a question -- i want to answer it right so i will come back later and not just say whatever comes into my head which i have been doing this week (sorry!)