I have been living with ME/CFS since I was 15 years old, but I didn’t start tracking my health until I was diagnosed at the age of 19. And, full disclosure: I previously worked on a health tracking app that no longer exists. But, somewhere hidden on the corner of the internet exists a video of me at 22 years old singing a song I made up called “we believe that tracking is the future” into the wind in the desert. I’m a big fan of health tracking and I think it’s important for you and me, for all of us, and for research.
For you (& for me)
Back to me at age 19 when I started tracking my symptoms and treatments for the first time: I was only tracking by jotting down quick notes on a physical calendar. I’d note when I had a particularly bad day or when I started, stopped, or changed a treatment. This data was immensely better than nothing and led to some valuable insights like “3 days after I started X treatment, my pain levels skyrocketed – let’s stop that one.” But, I wasn’t getting much data as far as what was happening day in and day out. Was I marginally better than I was 6 months ago? That would require remembering what I felt like 6 months ago!
When I started tracking my symptoms on a 0-10 scale (using that app I helped develop that no longer exists), I started to see the benefits pretty quickly. I remember one particularly bad summer where I just could not get my sleep under control. It’s always a small battle for me, but that summer was particularly bad, and I would go several nights in a row waking up at 3 or 4 a.m. and not going back to sleep – absolute chaos for a college student who desperately needed to keep normal hours. I tried all the sleep aids and tricks to improve my sleep quality but nothing helped until I started looking at my tracking data. In that tracking app I mentioned earlier, there was a feature that would allow you to display a chart showing how your symptoms changed over time and you could select one or more symptoms to display over time. When I narrowed down the chart to just display my stomach/gastrointestinal pain vs. disordered sleep over time, it all clicked.
I couldn’t sleep because my stomach was keeping me awake. I realize this sounds simple and so obvious that I should have noticed but honestly, I hadn’t noticed anything of the sort. I wasn’t waking up with gastrointestinal pain and I had never noticed a nighttime stomach ache but every single day I reported stomach pains, I would wake up and not fall back asleep. Once I tried a few dietary changes, I realized that if I was more careful about what I ate, I could sleep through the night sometimes. This was a breakthrough for me and just one of a string of several small breakthroughs that improved my quality of life over the next couple of years of tracking.
The key to these small breakthroughs was identifying patterns I might never have put together in my day to day life. In the case of my disordered sleep, I’m not sure I ever would have put the pieces together without a graph. When you don’t sleep for half of the night, your ability to figure out why is automatically impaired. I credit health tracking with a lot of my improvements over the last few years and the rest of the credit goes to the treatments that I’ve learned work best for me.
Tracking my symptoms and treatments has helped me answer questions like:
● Is that new drug I started 3 months ago making a difference?
● Am I better or worse than I was 6 months ago?
● What did I do the last time I had a flare of this specific symptom that seemed to help a bit?
● Is x symptom getting worse every Fall or am I just remembering it wrong?
Tracking is going to be important for all of us. I believe that this data is going to help us as people living with ME/CFS help each other. In my experience, the ME/CFS community is full of people who are doing their best to help each other make the most of their lives. I’ve swapped treatment experiences with people on at least 4 continents and would not be nearly as functional as I am today if people who have been living with ME/CFS longer than I have had not shared their experiences and recommendations with me. There’s no replacing good medical care and I’m not suggesting anyone without a license dispense medical advice. However, I’ve found it to be valuable when other people who live with ME/CFS share which treatments worked for them, which lifestyle modifications they have adopted, their favorite everything-free recipes (for those of us who have at least 2 major food groups off of the table), and so much more. When I found a group of people who understood what my day-to-day life looks like and who offered mutual support and friendship, my quality of life improved. I hope that the planned social features of the You + ME app can offer the same for you and through tracking, you can connect with the same community.
Health tracking just might help individuals to understand their health at a deeper level and to make more informed decisions, and can offer us a chance to come together as a community and support each other. Now I want to zoom out and imagine the research insight that we as a community could get when researchers have a chance to work with this data. Research might be our biggest need as a community and ME/CFS research is also desperately underfunded.
Health tracking data just may help get some more good research off of the ground. When researchers apply for funding, they almost always need to show some sort of preliminary data in their application. For researchers studying ME/CFS, this preliminary data can be hard to come by. What if a researcher could say that based on analyzing all of our symptom tracking data, they found that people with a specific ME/CFS symptom respond well to a specific drug and they could get research funding to carry out a full controlled study? That’s not the only example; it could also be identifying subtypes based on symptom profiles, getting more insight into post-exertional malaise based off of interesting correlations to symptoms or treatments, or any hypothesis that our combined tracking data suggests. The point is that your data can be a powerful tool to help all of us get one step closer to a biomarker or an FDA-approved treatment.
When you add your health tracking data to the You + ME Registry, the data you add, which is always anonymized and safely protected, contributes directly toward this goal. Whether you’re tracking for yourself, for the community, or for research, please consider signing up for the registry and adding your data, so we can all benefit from future research together.