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Smartphone apps and ME & CFS?

Discussion in 'Lifestyle Management' started by Snow Leopard, Feb 26, 2014.

  1. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Has anyone found smartphone apps useful in monitoring/managing their health?

    For example:
    The ME CFS Diary (Free on Android)


    If we were to start from scratch, what would be most useful in such an app?

    If there was a possibility for (opt-in) anonymised data collection to be used in research, would you want to participate?
  2. Calathea

    Calathea Senior Member

    I've been using the ME/CFS Diary for a few weeks. I'm finding it frustrating, because it's a brilliant idea, but it's very poorly executed, not to mention overpriced. It doesn't actually offer any advice, as it claims. Instead, when you start it, it asks you what you think your baseline is, and then after a while it might tell you that your baseline is a different number. However, logging my activity for every half-hour does make me very aware of how I'm balancing my days, and that in itself is going to be an important help, I think. Be warned that even on a 7" tablet, the text is tiny and most of the graphs are unreadable, plus it has the irritating feature of only working in landscape mode, and the sliders don't work properly. As well as general readability issues, I'd love to see a version of this where it came up for a score for each day, also translated that into a colour, and put both on a calendar that you could easily flip through to look at your progress.

    I downloaded FibroMapp last night, and annoyingly missed the deadline for a refund. I'm sure it's a good app, it's just not what I'm looking for. I already have a complex spreadsheet set up on the laptop for tracking symptoms, meds and such.

    I use Dosecast for tracking when I take as-needed meds and to remind me to take more. It's not bad, although it can get tricky when it comes to meds I can't take after a certain time in the evening, and it keeps on doing reminders for them despite my settings.

    Water My Body is good for monitoring and reminding you to drink enough water (with salt in it, if you're me). You can set it up so that the different glasses and mugs match the volume capacity of the ones you own. I have to confess that one's fallen by the wayside. I should get back to it, considering that the cardiologist wants me drinking 3l a day and I'm not sure I'm making that.

    One I've just started using is Shift.Cal. This is an app for marking work shifts, but I've adapted it so that I can sum up each day in terms of energy expenditure, and colour-code them as well. It currently runs from 1 (bedbound, purple) through blue, green (3, restful day), yellow up to red (7, very high energy), though 7 is for rare occasions. It shows the number and the colour on the calendar. I think it's going to be a very useful way to look back, month-at-a-time view, to see how well I've been. Plus if I have, say, five 6s in a row followed by a long row of 1s and 2s, I know that I've pushed myself into a crash, but if I have a mix of 4s, 5s and 6s, and can keep it going steadily, I know that it's currently a sustainable level for me. (I'm doing much better than when I was last on PR, by the way.) So as I was saying, I'd love it if the ME/CFS diary could include this sort of functionality as well.

    Right now I'm hunting for an app where I could track pain levels and compare them to medication levels, specifically magnesium oil. I've only just started using magnesium oil and I want to work out whether it's working for me, and which dose I need.

    I really wish I knew how to write apps, as I could probably put something pretty good together, judging from my years of creating my own spreadsheet with its graphs and charts. But I have no coding experience at all! Ironically, my partner has just started working for an Android app developing company, not that he's at the stage of writing apps yet.
    SickOfSickness, rosie26 and Valentijn like this.
  3. ithought


    Wales uk
    Keep it simple or my cognitive function will be lost on it.
  4. Calathea

    Calathea Senior Member

    These things do tend to get ridiculously complicated over time, don't they. Let me show you what I'm doing with the Shift.Cal+ app.

    Go to this page, and you'll see my Shift.Cal+ records for 13 months, showing a clear progression in activity. 1 is bedbound, shown by purple, and then it grades through blue, green, yellow, orange to red for 10, very high activity. I simply gave each day a number, and then could look back and see my progress. Here are a couple of screenshots, though you'll need to go to the link above to see the rest.

    2014-01shiftcal_screenshotJan2014.png 2014-03shiftcal_screenshotMar2014.png Shift.Cal+ March 2013-March 2014.JPG 2014-01shiftcal_screenshotJan2014.png 2014-03shiftcal_screenshotMar2014.png Shift.Cal+ March 2013-March 2014.JPG
    Valentijn and Indigophoton like this.

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