Chronic Fatigue and Postexertional Malaise in People Living With Long COVID: An Observational Study

Abstract

Objectives People living with long COVID describe a high symptom burden, and a more detailed assessment is needed to inform rehabilitation recommendations. The objectives were to use validated questionnaires to measure the severity of fatigue and compare this with normative data and thresholds for clinical relevance in other diseases; measure and describe the impact of postexertional malaise (PEM); and assess symptoms of dysfunctional breathing, self-reported physical activity, and health-related quality of life. Methods This was an observational study with a cross-sectional survey design (data collection from February 2021 to April 2021). Eligible participants were adults experiencing persistent symptoms due to COVID-19 that did not predate the confirmed or suspected infection. Questionnaires included the Functional Assessment of Chronic Illness Therapy–Fatigue Scale (FACIT-F) and the DePaul Symptom Questionnaire–Post-Exertional Malaise. Results After data cleaning, 213 participants were included in the analysis. The total FACIT-F score was 18 (SD = 10) (where the score can range from 0 to 52 and a lower score indicates more severe fatigue), and 71.4% were experiencing chronic fatigue. Postexertional symptom exacerbation affected most participants, and 58.7% met the PEM scoring thresholds used in people living with myalgic encephalomyelitis/chronic fatigue syndrome. Conclusion Long COVID is characterized by chronic fatigue that is clinically relevant and at least as severe as fatigue in several other clinical conditions. PEM is a significant challenge for this patient group. Because of the potential for setbacks and deteriorated function following overexertion, fatigue and postexertional symptom exacerbation must be monitored and reported in clinical practice and in studies involving interventions for people with long COVID. Impact Physical therapists working with people with long COVID should measure and validate the patient’s experience. Postexertional symptom exacerbation must be considered, and rehabilitation needs to be carefully designed based on individual presentation. Beneficial interventions might first ensure symptom stabilization via pacing, a self-management strategy for the activity that helps minimize postexertional malaise.

"I feel like my body is broken": exploring the experiences of people living with long COVID

“…The purpose of this sub-study was to better understand and explore individuals' experiences with long COVID and commonly reported symptoms using qualitative data collected from open-ended survey items contained within a larger survey [ 7 ]. Findings support initial research, which took place during or shortly after the first wave of the pandemic in the United Kingdom with individuals affected by long COVID who were predominantly healthcare professionals [ 23 – 27 ].…”

“…First, as acknowledged in the larger study [ 7 ], online questionnaires are subject to selection bias. Thus, the extent to which the sample described herein is representative of the population of people living with long COVID is unknown.…”

“…Fourth, this was an anonymous survey, and therefore, the confirmed or suspected infection with SARS-CoV-2 was self-reported. Despite rigorous data cleaning and the severity of self-reported symptoms as previously reported [ 7 ], it is possible that some of the participants do not represent the population of interest. Methods of verification of laboratory-confirmed or probable SARS-CoV-2 infection should be considered and reported in future studies.…”

“…The qualitative data reported herein were collected as part of a larger observational study using an online survey [ 7 ], which was approved by the University of Calgary Conjoint Health Research Ethics Board (REB21-0159). Initially, the qualitative data were collected to enable participants to qualify or elaborate on their closed-ended responses, with planned content analysis if data were sufficient.…”

“…The larger online survey consisted of a socio-demographic and medical questionnaire, five closed-ended questionnaires assessing fatigue, post-exertional malaise, health-related quality of life, breathing discomfort, and physical activity (described and presented elsewhere [ 7 ]), and seven open-ended items. The seven open-ended items, which are the focus of this manuscript, were presented after each of the five closed-ended questionnaires, or block of questions, via stems such as " Please use this space for any other comments about your experience with symptoms that continued or developed after acute COVID‑19, or the support you have received for long COVID.…”