Trial Report Good Days, Bad Days Understanding the Trajectories of Technology Use During Chronic Fatigue Syndrome, 2024, Paymal and Homewood

Good Days, Bad Days Understanding the Trajectories of Technology Use During Chronic Fatigue Syndrome

ACM Reference Format: Lea Paymal and Sarah Homewood. 2024. Good Days, Bad Days: Understanding the Trajectories of Technology Use During Chronic Fatigue Syndrome. In Proceedings of the CHI Conference on Human Factors in Computing Systems (CHI ’24), May 11–16, 2024, Honolulu, HI, USA. ACM, New York, NY, USA, 10 pages. https://doi.org/10.1145/3613904.3642553

https://dl.acm.org/doi/pdf/10.1145/3613904.3642553

ABSTRACT

People with chronic illness often fluctuate between “good days” and “bad days” where symptoms are more or less severe depending on a range of factors and triggers.

Our research contributes preliminary empirical knowledge on technology use during chronic illness depending on fluctuations in symptoms over time.

We conducted a scoping study with people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to understand how their illness shapes how they use technologies in their everyday lives.

This research contributes a timely HCI lens on the under-researched illness of ME/CFS, proposes the “trajectories of technology use” model that can be used to articulate how technologies are used during chronic illness, and points to design openings for technologies that are more accessible for people who experience chronic fatigue, sensory sensitivities and cognitive limitations.

These design openings include non-screen-based technologies, and designing technologies that acknowledge and adapt to the changing body during fluctuations in symptoms.

 

More like between 'bad days' and 'worse days'. I haven't had a good day in... I don't even remember. That old life is so far in the past I can't remember any of it. It's a completely different version of me, even though I am still mostly that same person.

In the mildest patients good days definitely exist, but this is not a fair representation of the whole illness, lots of us never have any good days.

From the interviews, I don't see any good days there either, just less awful ones. Being able to print a document, and not much more, is no one's definition of a good day.