Just completed the survey but found it very difficult to answer these questions in a meaningful way. For example, how important a feature is would depend on what purpose an individual uses the app for. Also, there is likely to be a discrepancy between how often records
should be entered to be create useful data and how often records
will be entered due to time/energy constraints.
I can see three main purposes of the app, the first two are mentioned in the survey intro.
1/ Create records to take to doctor.
Only of any use if you actually have a doctor who would look at it and know what to do with it -not exactly a given. Probably the most useful application here would be to zero in on specific symptoms like pain or sleep and measure response to treatment. Though you wouldn't need an ME-specific app for that.
2/ Create a large data set for scientists.
This has the potential to be very useful... in theory... but there are a lot of big buts. Just some examples:
It would require very careful definitions/descriptions of symptoms so everybody understands them at least roughly in the same way. Somehow overlapping co-morbid symptoms would need to be accounted for separately. Data entry would need to be frequent and consistent (and lack of data entry must not be interpreted as lack of symptoms) and all symptoms would need to be recorded. This would lead to selection bias excluding the more severe without the necessary energy, and - tongue in cheek warning - conceivably would select for perfectionist type A personalities. Probably the most feasible application here would be in conjunction with a patient registry* where scientists approach patients to record a specific range of symptoms for a limited time for a particular study. Data security and patient control over what studies data is being used for is important.
3/ For personal tracking of symptoms and triggers (this doesn't appear to be the purpose of this particular app).
Many patients already do this in one way or another. The challenge here would be to create an improved system that's very flexible on the one hand and very simple on the other. I've tried the odd symptom tracker app in the past but never found any satisfactory ones allowing me to easily track what I wanted to track in the way I wanted to track it. For example, taking a question from the survey, the total amount of time spent per day on a certain type of activity is mildly interesting but not very informative: I can spend half an hour/day total standing or walking, no problem, but only if I break that down into much shorter periods spaced throughout the day, whereas half an hour all at once is a guarantee for PEM. All the apps I've tried were either easy to use but perfectly useless, or they required a lot of work inputting data for still only minor useful output, so not worth the effort (disclosure: I'm not very patient with any form of record keeping).
All in all this whole app idea sounds good in theory but strikes me as difficult to make work in a meaningful way in reality. But if there are any app developers out there looking for a big - no: huge - challenge, here's your chance. In case any such person is reading this, good luck with combining the following features:
- Ability to track all known ME symptoms (frequency, intensity, variation throughout day), with the option of selecting some individual symptoms only.
- Facility to enter additional symptoms not traditionally associated with ME (to see if they are linked).
- Ability to mark and analyse separately any symptoms that may, or may not be, due to comorbidities.
- Ability to track common PEM triggers and link them to symptoms.
- Facility to enter and analyse additional triggers a patient suspects of triggering symptoms.
- Ability to analyse cumulative triggers.
- Ability to analyse multiple interventions.
- Compatibility with all sorts of activity and HR trackers.
- Quick and simple data entry.
- Allow for both short-term (or on-off) and long-term tracking of specific symptoms/triggers/interventions.
- Present all the records and analyses in nice, clear graphics.
- And more I can't think of right now.
*Isn't Solve ME/CFS planning on doing something like that, patient registry and possibly even an app to go with that?
