Trial Report “A Switch Went off in My Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid, 2024, Sas

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“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

Keywords
  • PEM
  • Lived experiences
  • Cognitive Exertion
  • Triggers
  • Long Covid
  • Fatigue
  • Post-Covid Syndrome
  • Overstimulation
  • Post-exertional malaise
  • Body awareness
  • Stress
https://twitter.com/user/status/1783482514872451501
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I have skimmed the article. The downside is they presumably only included mildly affected people, since it was done online in groups lasting 2 hours. Having said that, I like the fact that the authors describe the discussion with and between the people with Long Covid relating to managing activity levels to try to avoid PEM, without any of the sociological jargon and thematic analysis and interpretations we see with so many of these interview based articles.

Instead the focus was on reflecting the various ways people pace, the things they find most difficult and the strategies they use, and developing ideas of technology that could be used to help.

I think the article provides some thoughtful ideas on ways technology can be used to help with pacing:

5.1 Support for Lightweight Tracking of and Sensemaking of Fatigue Symptoms
Findings indicate that the numerous, fluctuating and apparently random symptoms challenge people’s efforts to remember, communicate, and make sense of them, while the need for capturing Long Covid symptoms through
patients’ voices has also been also advocated by health researchers to better understand the condition and support its diagnosis [26][31].

Here we can think of lightweight tracking tools such as ecological momentary assessment (EMA) on smartphones or watches for capturing self-reports of fatigue symptoms through validated scales with few items in order to limit users’ burden and prevent worsening of symptoms. Similar caution for users’ low burden has been suggested for capturing the subjective experience of pain [1]. Our findings indicate that unlike physical exertion, cognitive or emotional one is more challenging to make sense of.

To sensitively address this need, we suggest careful selection of measuring scales for all three categories of identified symptoms: physical, cognitive and emotional exertion. These can include both mental effort scales [33][52], or emotional exertion scale of Maslach Burnout Inventory [30]. Self-reports should also include few, carefully curated items to capture contextual information that can support users understand the reason of their exertion: activity name, its social context, and environmental stimuli, i.e., noise, light.

In addition, self-reports can be augmented with both environmental sensors, as well as wearable sensors for capturing data on users’ activity, interaction with their environment, as well as heart rate variability (HRV). The latter is important, given consistent findings showing HRV as promising biomarker for stress [26], cognitive load [46] and cognitive impairment [19], as well those indicating the association of Long Covid with dysregulation of autonomous nervous system, particularly HRV dysregulation [4]. HRV could be recorded through integrated biosensors [11] such as electrocardiography (ECG) chest strap or photoplethysmography (PPG) wristband, while sensitively balancing the accuracy of the former with the wearability of the latter
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paragraph breaks added to make it easier to read.
 
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