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.