Trial Report The Unanticipated Use of Fitness Tracking Technologies During Post-COVID Syndrome, 2024, Homewood

Free:
https://dl.acm.org/doi/pdf/10.1145/3643834.3661617

Sarah Homewood, Kari Okholm Just, and Olivia Bramm Johansson. 2024. The Unanticipated Use of Fitness Tracking Technologies During PostCOVID Syndrome. In Designing Interactive Systems Conference (DIS ’24), July 01–05, 2024, IT University of Copenhagen, Denmark. ACM, New York, NY, USA, 15 pages. https://doi.org/10.1145/3643834.3661617

ABSTRACT

Long COVID is a new illness, and we still lack medical knowledge about possible treatments.

This has led to the independent adoption of fitness tracking technologies for the management of long COVID.

Through semi-structured interviews with 21 people with long COVID who used fitness tracking technologies, we found that fitness tracking devices were used to pace energy through finding correlations between activities and data, provide proof of illness to themselves, healthcare providers and friends and family, and to help gain a sense of agency and control during a new and enigmatic illness.

Our findings support and extend design openings for the development of “pacing technologies”.

These include the importance of customization and supporting the user in their recovery if appropriate, applying strategies for mitigating anxiety when tracking, facilitating the sharing of pacing data with friends and family and healthcare providers, and supporting users in identifying the optimal components of rest.

CCS CONCEPTS
• Human-centered computing → Interaction design; Interaction design theory, concepts and paradigms. KEYWORDS long COVID, post-COVID syndrome, self-tracking, pacing, pacing technologies, chronic illness, chronic fatigue, fitness tracking, misuse, use, sensemaking

 

They are clearly too much of a burden. "Experts" who happen to be inconvenienced by such data debunking their claims know it best. You just can't trust objective data like that!

Then again, a few studies from biopsychosauruses have explicitly mentioned that their participants were reasonably active, hence debunking the deconditioning myth, and it somehow makes zero difference. The claims aren't made with any intent of being taken seriously, and almost no one cares when they aren't.

In the end all they have is a bunch of primary schoolyard taunts: buck-buck little chicken is afraid of a little activity buck-buck-bucka! And it somehow works. Good grief.

 

Press release:

Long-COVID sufferers are conserving strength with a "hack" of their fitness tech
At the beginning of the pandemic, when people suffering from the long-term effects of COVID-19 faced more questions than answers from doctors, they began collecting data on themselves using fitness watches to better understand their disease.

https://www.eurekalert.org/news-releases/1059383

It’s long.

 

"It isn’t ideal for people who are ill to be measured by apps intended for sports and fitness. Being compared to a healthy body and asked to do more, when one’s own body doesn’t want to, can be an unpleasant experience. It gives feedback to people who are ill that isn’t appropriate and can trigger anxiety," she says.

===
"I quickly realized that I needed to use the watch contrary to its intentions. I had to counter its design. Whenever the watch informed me that I had walked far and needed to keep going to reach a new distance goal, it was my cue to sit down. Because the watch provided me with 'hard evidence' to compare my experiences with, I could actually begin to piece together what worked and what exacerbated problems for me," says the researcher.

 

I used a device exclusively for fitness for a while (a WHOOP). Had to stop because I couldn't endure it on my wrists anymore, but it did provide relevant data.

One of the most interesting was how some days I would hit close to the max level of exertion. I obviously was not exerting myself, those days were actually lazy by comparison with someone who does just enough exercise. But I hit the level of exertion that they would hit if they were participating in some all-day high-intensity training. While the most I would do those days is climb up a few stairs.

There is definitely useful data out of those comparisons. It didn't go very far but I remember Todd Davenport analyzing the NIH intramural study data from the CPET and it showed that pwME used far more energy for the same effort. I wish we had more to work with here. This should obviously be significant.

 

It’s ok that’s exactly what Visible does. And I’ve opted in to share my data with a Mount Sinai study led by David Putrino. Tech, eh?