Self-Reported Disablement in People Living With Long Covid and Myalgic Encephalomyelitis: A Cross-Sectional Comparative Study

Purpose: Individuals with Long COVID and myalgic encephalomyelitis are characterized by post-exertional neuroimmune exhaustion (PENE) that affects their daily functional abilities. The purpose of this study was to compare self-rated function and the associated burden of functioning in individuals with PENE associated with Long COVID and other causes. Methods: A secondary analysis was conducted of data collected from the initial validation study for the Post-exertional Malaise/Post-exertional Symptom Exacerbation Activity Questionnaire (PAQ). The sample was divided into two cohorts (SARS-COV-2 group and a No/Not Sure group). Descriptive statistics were calculated for each cohort. Independent sample t tests were performed on the continuous variables, and Pearson chi square tests were used to evaluate between cohort differences in frequencies of categorical data. Results: Of the 981 total survey responses, 675 were complete and available for analysis. A total of 178 indicated SARS-COV-2 infection as the precipitating factor for illness, and the remaining 495 indicated another precipitating factor or unknown. The most frequently self-selected “important” activities across both cohorts were “carry out my daily routine” (12.5%), “prepare meals” (9.8%), and “maintain employment for financial reward” (8.3%). Comparative analysis between groups revealed few statistically significant differences across all three functional scales. Conclusions: This study suggests similarities in impacts on self-reported function and the associated burden of achieving a meager level of functioning regardless of precipitating event for PENE. Results from this study may be used to design and adequately power future studies using the PAQ to measure health-related quality of life.