Data Queen

One of the biggest weapons I have in the fight against ME/CFS is data. I keep track of my activities, medications, sleep, and symptoms daily, and over time that data can be very powerful.

I’ve blogged extensively about wearing a heart rate monitor, and I wear it almost every day. The beeping when my heart rate goes too high is an immediate and valuable signal to everyone around me that I need to rest, or just stop for the day. I’ve developed a good sense of the kinds of activities that trigger the alarm. Climbing a flight of stairs is ok, but not too fast. Pulling a couple weeds is ok, but more than five minutes of weeding (even sitting down) is too much. Making jam is possible, but with plenty of breaks.

In January, I added a Fitbit to the mix. There are many types of Quantified Self devices, and I think ME/CFS patients can use them to gain better control over their own self-care, and contribute to research at the same time. My Fitbit tracks the number of steps I take each day, and the number of stairs that I climb. You can also use it to track your sleep, although I don’t bother with that. As I said at the FDA meeting, having the Fitbit pedometer data helps me track how physically active I can be. The recommendation for healthy people is to take 10,000 steps each day. My biggest day so far this year was 3,360 steps. So my maximum effort is still only 33% of what a healthy person should do. My worst day was 337 steps, only 10% of my biggest day. That’s an extraordinary range between good and bad, but my overall average is about 2,000 steps per day.

Think of what we can do with this kind of data. Right now, I’m trying to determine what my safe maximum steps might be. Let’s assume that 2,000 steps is my safe max. If I’m running behind on a particular day with only 1,500 steps near bedtime, I can be a little more active. The reverse is also true. If I hit 1,500 steps at 11am, then I have to really slow down for the day. Tracking steps can also help me monitor any progress or increase in my capacity. And in a clinical trial, tracking patients’ daily steps would be a much better way to measure physical capacity and improvement than a questionnaire or single walking test.

The other tracking “device” I use is plain old pen and paper. For years, I have kept a daily log of how much I slept, my activity (both quantity and type of activity), my symptoms and my medications. You can download a copy. My doctor reviews my logs at each visit, and at the end of the year I calculate my weekly averages. I’ve kept these logs for fifteen years. Imagine how valuable this kind of longitudinal data could be for researchers! It’s also been helpful in my ongoing disability claim, because I can document my activity and symptoms levels over time.

It takes a little bit of discipline to fill out the log sheet every day and remember to sync my Fitbit. It also takes time and some data aggregation to be able to spot trends, set goals, and identify factors that help or hurt. It’s not a perfect system. My biggest need is a way to track cognitive effort beyond hours spent on the computer. A Fitbit for the brain would be excellent! But with a little effort, I am able to collect data that helps me and could help researchers in the future. What would be fantastic is if we had a way to capture all this data electronically and then analyze it all together. I suspect it is only a matter of time before those tools exist.


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11 Responses to Data Queen

  1. Sally says:

    As you probably know – I too use a Fitbit. I tried and failed with the heart rate monitor for various reasons, but I find keeping my step count low really helps moderate symptoms in the long run – and so hopefully leave my body some energy for recovery.

    I find I need to keep to 1000 day average to avoid distressing symptoms. (It’s a very tough call, when a walk from the bedroom to the kitchen and back uses 100 steps.) However I also use a mobility scooter when leaving the house and this gives me a load more freedom to enjoy life.

    As well as step count I also look at the way the level of activity is split up in the pie chart. Most of my waking time is “inactive” and usually I have about 2 – 3 hours “lightly active”; about 10 minutes (or less if I can) “fairly active” and no time in the “very active” category. I think this is a way of helping keep heart rates down. Another useful feature is the chart of how steps are spread through the whole day. The number of steps per 5 minute block is charted for the whole day, and I rarely do more than 80 steps in any 5 minute period…..

    Glad you find the Fitbit useful. šŸ™‚

  2. Sasha says:

    Very interesting! I’ve been wondering about getting a FitBit and am waiting to see what data the OMI’s forthcoming OpenMedNet system will want. If FitBit data is among it, I’ll be tempted to get one. Meanwhile, I’ve read Amazon reviews saying that you might as well get a pedometer. What do you think? Does a FitBit really offer any advantages other than measuring stairs and sleep? They’re quite expensive.

    • Jennie Spotila says:

      I really like that the Fitbit is automated. I just put it on in the morning and then sync the data once a week. Using a mechanical pedometer would require daily tracking, so a little more effort. I also like that it captures stair climbing although I’m not currently using that info proactively.

  3. chris says:

    Thanks for this information. It is very helpful. The comparisons are interesting and will get more so in time as more patients wear this or similar devices.


  4. Gabby says:

    Thank you for this article Jennie. When I took part in the Dr. Enlander’s Mt. Sinai study this past February, they had me wear a Fitbit for the entire four days. They are using this data as one element of the comprehensive study. It was easy and comfortable to use. I will look into getting one myself.

    I appreciate the downloadable chart.

  5. Tore N Fjelldal says:

    I have been thinking about getting a fitbit, the description in a test is just right for CFS/ME
    I guess the time has,come to get it to day! šŸ™‚

  6. Pingback: Occupy CFS » Data Queen | Living Stuff

  7. Anna says:

    Thanks for this. I was given a fitbit at Christmas and have worn it on and off including for sleep – as it seemed a great way to track activity. I was fascinated to read one of the comments saying Enlander used them because I’ve been wondering how accurate they are particularly if you’re at the more severe end of the scale. I’ve pretty much stopped using it seems to miss out some activity or add it in when I’m not moving. Recently I took a long car journey and it added 10 sets of stairs climbed! This when it sometimes doesn’t register me climbing stairs at home. I’m pretty severe (a better day atm can be around 250-300 steps) so I notice if I’ve walked to another room and back and the monitor hasn’t registered the 50 odd steps. When I got a family member to wear it it registered movement fine. So I’m wondering whether maybe I’m just too slow or move so differently to a ‘normal’ user that it just doesn’t register some of my activity? I’d be curious to know if anyone else had the same problem?

    • Jennie Spotila says:

      I’ve heard of other people having similar problems, especially with stairs. I know a patient who has short flights of stairs in her house, and it does not register those as stairs climbed. But the other problems you describe are unusual. Where are you wearing the fitbit? I wear mine clipped to a pocket. Maybe that makes a difference? I think it would be worth you emailing the company to see if they can figure it out.

  8. Anna says:

    Thanks for the response. I usually wear mine clipped to my waistband or a pocket. I live in an old and pretty tall house so there’s about 17 steps. I’ll contact the company and ask if they can think of a reason.

  9. Suella Postles says:

    It sounds like there are some teething problems with the Fitbit.

    Worth looking at the Amazon sites reviews of the product. My enthusiasm has waned somewhat although I am heartened by Jennie’s use of it ver half a year plus.

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