Home > Research > Publications & Outputs > “A switch went off in my whole body”

Electronic data

  • A Switch Went off in my Whole Body final

    Accepted author manuscript, 546 KB, PDF document

View graph of relations

“A switch went off in my whole body”: Lived experiences of fatigue and post-exertional malaise in long Covid

Research output: Contribution in Book/Report/Proceedings - With ISBN/ISSNConference contribution/Paperpeer-review

  • Corina Sas
  • Y Lotankar
  • R Adam
  • K Bradbury
  • J Cooper
  • D Hill
  • V Martinez
  • D Powell
Publication date27/02/2023
Host publicationCHI'2023 Extended Abstracts on Human Factors in Computing Systems
Place of PublicationNew York
<mark>Original language</mark>English


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.