Cripping the Co-Design of Pacing Technologies For Energy-Limiting Conditions, 2025, Homewood

[Dolphin]

https://www.researchgate.net/profil...chnologies-For-Energy-Limiting-Conditions.pdf

Abstract

People with energy-limiting conditions, such as chronic fatigue syndrome (ME/CFS) and Long COVID, need to limit their activity levels and balance exertion with rest and restorative activities.

This practice is known as “pacing”.

There is an opportunity for technology to help people with this process, but conducting research with this population can be difficult given their limited and unpredictable energy levels.

This research explores how we can use crip theory to inform the development of co-design methods suitable for this cohort, and as an analytical lens to explore how these tools should be designed outside of normative and abelist assumptions about fatigue and productivity.

This is done through a 5 week Asynchronous Remote Community study utilising various co-design techniques.

These findings point to future designs of pacing technologies and contribute insights about developing more accessible approaches to conducting research with people with energy-limiting conditions.

CCS Concepts
• Human-centered computing → Participatory design; Empirical studies in interaction design.

Keywords chronic fatigue syndrome, ME/CFS, long COVID, post-COVID syndrome, pacing, self-tracking technologies, crip theory, co-design

ACM Reference Format:
Sarah Homewood, Claudia A Hinkle, and Irene Kaklopoulou. 2025. Cripping the Co-Design of Pacing Technologies For Energy-Limiting Conditions. In CHI Conference on Human Factors in Computing Systems (CHI ’25), April 26–May 01, 2025, Yokohama, Japan. ACM, New

 

[Jonathan Edwards]

A bit 'crip-tic'?

 

[Utsikt]

I have not read all of the paper. They asked the participants to imagine a magical machine that could help them. This is one concept from one of the participants:

P1's sketch of their design concept that tracks physiological markers through wearable sensors and responds to energy-limiting symptoms by delivering nutrients and anti-inflammatory medication.

5.2.2 Modes of Interaction.
The concept developed by P1 (see 1) combined multiple wearable elements, with the goal of providing therapeutic treatment in response to biometric data, rather than focusing on pacing energy. The design stemmed from her reading of biomedical research on her condition and included a cap for stimulating cranial trigger points, gloves which change temperature to soothe aching joints, and flexible tubing and electronic leads which are clipped to the shoulders so that the required minerals and nutrients can be injected into particular body parts. A TENS stimulation was used to soothe sore muscles and an ear clip provided vagus nerve stimulation to help calm the body. P1 described how needles delivering nutrients and anti-inflammatory medication would need to be inserted by a partner each morning. Her lack of mobility removed any portability concerns and motivated the chair-based design that can be used whilst engaging in other activities (e.g. using a computer).

I’m not sure how this research contributes to anything. It would be a bit like asking me to design a magical car. I would have no idea about anything that a car actually needs to function. The blame lies fully on the rsearchers, the participants just answered their silly questions.