“A Switch Went off in My Whole Body”:: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid

Corina Sas; Yojana Lotankar; Rosalind Adam; Katherine J Bradbury; Jonathan Cooper; Derek L Hill; Veronica Martinez; Daniel Powell

doi:10.1145/3544549.3585846

“A Switch Went off in My Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid

Corina Sas, Yojana Lotankar, Rosalind Adam, Katherine J Bradbury, Jonathan Cooper, Derek L Hill, Veronica Martinez, Daniel Powell

Research output: Chapter in Book/Report/Conference proceeding › Published conference contribution

Abstract

The growing HCI agenda on health has focused on different chronic conditions but less so on Long Covid, despite its severe impact on the quality of life. We report findings from 2 workshops with 13 people living with Long Covid, indicating the challenges of making sense of their physical, cognitive, and emotional symptoms, and of monitoring the triggers of post-exertional malaise. While most participants engage in pacing activities for the self-management of fatigue, only a few are aware of the importance of planning all their daily activities and routines in order to avoid post-exertional malaise. We conclude with design implications to support lightweight tracking and sensemaking of fatigue symptoms, novel data analytics for monitoring the triggers of post-exertional malaise and the worsening of symptoms, and support for self-management in order to prevent post-exertional malaise.

Original language	English
Title of host publication	Extended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems
Editors	Albrecht Schmidt, Kaisa Väänänen, Tesh Goyal, Per Ola Kristensson, Anicia Peters
Place of Publication	New York
Publisher	Association for Computing Machinery
Number of pages	7
ISBN (Print)	9781450394222
DOIs	https://doi.org/10.1145/3544549.3585846
Publication status	E-pub ahead of print - 19 Apr 2023
Event	ACM CHI Conference on Human Factors in Computing Systems - Congress Center Hamburg (CCH), Hamburg, Germany Duration: 23 Apr 2023 → 28 Apr 2023 https://chi2023.acm.org/

Publication series

Name	CHI EA '23
Publisher	Association for Computing Machinery

Conference

Conference	ACM CHI Conference on Human Factors in Computing Systems
Abbreviated title	CHI 2023
Country/Territory	Germany
City	Hamburg
Period	23/04/23 → 28/04/23
Internet address	https://chi2023.acm.org/

Bibliographical note

This work has been supported by Digital Health: Innovative engineering technologies to improve the understanding and management of fatigue funded by EPSRC. Grant reference EP/W003228/1.

Keywords

PEM
Lived experiences
Cognitive Exertion
Triggers
Long Covid
Fatigue
Post-Covid Syndrome
Overstimulation
Post-exertional malaise
Body awareness
Stress

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1145/3544549.3585846Licence: Unspecified

Cite this

Sas, C., Lotankar, Y., Adam, R., Bradbury, K. J., Cooper, J., Hill, D. L., Martinez, V., & Powell, D. (2023). “A Switch Went off in My Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid. In A. Schmidt, K. Väänänen, T. Goyal, P. O. Kristensson, & A. Peters (Eds.), Extended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems (CHI EA '23). Association for Computing Machinery. https://doi.org/10.1145/3544549.3585846

“A Switch Went off in My Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid. / Sas, Corina; Lotankar, Yojana; Adam, Rosalind et al.
Extended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems. ed. / Albrecht Schmidt; Kaisa Väänänen,; Tesh Goyal; Per Ola Kristensson; Anicia Peters. New York: Association for Computing Machinery, 2023. (CHI EA '23).

Research output: Chapter in Book/Report/Conference proceeding › Published conference contribution

Sas, C, Lotankar, Y, Adam, R, Bradbury, KJ, Cooper, J, Hill, DL, Martinez, V & Powell, D 2023, “A Switch Went off in My Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid. in A Schmidt, K Väänänen, T Goyal, PO Kristensson & A Peters (eds), Extended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems. CHI EA '23, Association for Computing Machinery, New York, ACM CHI Conference on Human Factors in Computing Systems, Hamburg, Hamburg, Germany, 23/04/23. https://doi.org/10.1145/3544549.3585846

Sas C, Lotankar Y, Adam R, Bradbury KJ, Cooper J, Hill DL et al. “A Switch Went off in My Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid. In Schmidt A, Väänänen, K, Goyal T, Kristensson PO, Peters A, editors, Extended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems. New York: Association for Computing Machinery. 2023. (CHI EA '23). Epub 2023 Apr 19. doi: 10.1145/3544549.3585846

Sas, Corina ; Lotankar, Yojana ; Adam, Rosalind et al. / “A Switch Went off in My Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid. Extended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems. editor / Albrecht Schmidt ; Kaisa Väänänen, ; Tesh Goyal ; Per Ola Kristensson ; Anicia Peters. New York : Association for Computing Machinery, 2023. (CHI EA '23).

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