Title : Patient-reported health outcomes are comparable between people with ME/CFS and Post COVID-19 condition over time
Abstract:
Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post Coronavirus Disease 2019 (COVID-19) are chronic, multi-systemic illnesses that require multidisciplinary management approaches. However, misalignment of care access assessments with the functional impairments associated with these illnesses and poor representation in health policies hinder the provision of necessary care and support. The present longitudinal study serves to highlight the long-term burden of living with ME/CFS and Post COVID-19 Condition by examining illness presentation and impact over time in an Australian cohort.
Methods: Online study advertisements were distributed between October 2021 and October 2023. Respondents were deemed eligible to participate if they: i) were aged between 18 and 65 years; ii) were a resident of Australia; and iii) had been diagnosed with ME/CFS or Post COVID-19 Condition by a physician. Data collection is ongoing and involves the distribution of three self-administered questionnaires separated by six months. The collection of symptom presentation data has been informed by the Centers for Disease Control and Prevention Symptom Inventory Questionnaire for ME/CFS. This study employs validated measures to capture patient-reported health outcomes, including the Australia-Modified Karnofsky Performance Scale, 36-Item Short-Form Health Survey version 2, World Health Organization Disability Assessment Schedule version 2.0, Modified Fatigue Impact Scale, and Dr Bell’s Chronic Fatigue and Immune Dysfunction Syndrome disability scale.
Results: Most of the ME/CFS (n=54) and Post COVID-19 Condition (n=12) participants were female (n=41, 75.9% and n=8, 66.7%, respectively, p=0.70) and the two cohorts were comparable in age (median (M)=48.00, interquartile range (IQR)=15.50 years and M=52.50, IQR=12.00 years, respectively, p=0.082). Illness duration was significantly longer among the ME/CFS participants than those with Post COVID-19 Condition (M=14.25, IQR=15.79 years and M=0.75, IQR=0.32 years, respectively, p<0.0001). All patient-reported outcome scores (except the Role Emotional domain among the Post COVID-19 Condition participants) were compromised at all timepoints for both illness cohorts. None of the patient-reported outcomes differed significantly between timepoints among the ME/CFS participants. At the six-month timepoint, the Post COVID-19 Condition cohort returned significantly higher Karnofsky Performance and Dr Bell’s disability scale scores when compared with the ME/CFS group (p=0.0090 and p=0.017, respectively). However, no significant differences were observed in any measure of quality of life, functional capacity, or fatigue impact at six months. Post-exertional malaise – the hallmark symptom of ME/CFS – was comparable in prevalence and severity between the ME/CFS and Post COVID-19 Condition cohorts at both the baseline and six month timepoints. PEM scores were not more likely to improve among people with Post COVID-19 Condition than those with ME/CFS (p=0.68). Updated results will be provided as data collection continues.
Conclusions: The results of present study foreground the substantial and prolonged impacts of ME/CFS and Post COVID-19 Condition on patients’ lives. These findings exemplify the ongoing functional limitations associated with these illnesses and thereby underscore the need for accessible, holistic healthcare and disability support services for people living with ME/CFS and Post COVID-19 Condition. Mitigating the transmission of COVID-19 will be instrumental in reducing the long-term burden of chronic, multi-systemic illness on populations and healthcare systems.
Audience Take Away Notes:
- Patient-reported health outcomes were compromised at all timepoints among the ME/CFS and Post COVID-19 Condition participants
- The Post COVID-19 Condition participants’ overall health perceptions scores increased from baseline and were significantly higher than the ME/CFS participants’ at six months follow-up. However, no measures of quality of life, functional capacity, or fatigue impact differed significantly between the two cohorts
- Similarities between these two cohorts in patient-reported outcomes suggest that the illness trajectory of Post COVID-19 Condition may be comparable with that of ME/CFS
- ME/CFS and Post COVID-19 Condition have pervasive impacts of on patients’ lives. These preliminary findings necessitate access to holistic and person-centered healthcare and disability services to support people living with these illnesses
