Activity/symptom logging

[poetinsf]

I finally got off my butt and ported my fatigue/PEM prediction model completely over to R. Now I'm trying to figure out how to package it for the users. The best way probably is a website that people can log in with their google/fitbit ID to view their intraday/inter-day data and play with the prediction to see if it is of any use.

I think it will be a worthwhile project even if nothing comes out the project itself. It can at least kickstart an effort to establish objective relationship between exertion and ensuing fatigue/PEM. It would aid the management of ME/CFS for one thing, if you can predict/forecast your PEM/disability. For another, we desperately need an objective way to measure exertion and fatigue for both clinical and research purpose. All we have now is subjective feel or questionnaires which are both tedious and not particularly reliable.

I'd like to eventually turn it into a platform for people to experiment with their own models as well, and crowd-source the effort. Somebody out there with imagination could come up with a better way to predict fatigue/PEM. I still have to figure out ways to provide a secure sandbox for such experimentation. I'll also open-source the software so that people can contribute to improving the software itself.

Meanwhile, I still don't have an automatic way to measure fatigue. I'll eventually look into the fitbit device API and see if there is a way for fitbit to automatically detect ADL and measure fatigue. But that would be a project entirely by itself further down the road. For now, the users will have to enter their fatigue manually. Some people already log their activities, fatigue, supplements, etc. (I, for example, use a google sheet to log everything relevant to ME/CFS.) And it may be possible to pull data from the existing log automatically so that the users don't have to enter them again.

So, the question I have for now is about logging. Do you log your daily activities, symptoms, etc. ? If you do, what tool do you use to log? If not, would you be willing to give it a try if an easy way is available?

 

[Kitty]

Do you log your daily activities, symptoms, etc. ?

Noooo!

That would take up all of what remains of my capacity to do stuff, and I'd rather text rubbish with a friend, or read a book, or play a tune.

I think I'd even rather clean the shower, which is my least favourite job but at least there's a point to it. I genuinely find it hard to see any in constantly reminding myself how crap I feel.

 

[Trish]

I think it's probably more use to pwME in the first year or so to help understand the connection between physical activity and symptoms, especially PEM.

I tried the free visible app for a month recently and even just remembering to get it to measure HRV in the mornings and enter symptoms in the evening was more than I wanted to do. I had tried it before and wanted to see if their daily score made any more sense. It didn't.


I found fitbit step count very useful when I first started using it to register that I crashed above a particular step count the day before, which was very useful but didn't need an app beyond the Fitbit records from recent days to spot the pattern.