Presentation (CTI)

OBJECTIVES: ME/CFS is a chronic neurological disease with the hallmark symptom of post-exertional malaise (PEM) alongside other symptoms such as fatigue, cognitive impairment, and pain. Its etiology is still unknown; the diagnosis relies on international consensus criteria. As no curative therapy exists, treatment focuses on symptom management. The prevalence in the US is estimated at 0.42% of the adult population with women being affected three times as often as men. As many Post-COVID patients meet the ME/CFS diagnostic criteria, a rise in prevalence is expected. Besides the severe symptoms, ME/CFS can lead to negative economic consequences. Therefore, this review aims to answer the question: What is known about the burden of ME/CFS?
METHODS: Our scoping review followed the PRISMA-ScR guidelines. A systematic literature search was conducted using six databases, complemented by citation searching. To assess the study quality, we used a modified version of the Mixed Methods Appraisal Tool supplemented with Section A of the Critical Appraisal Skills Programme Systematic Review Checklist.
RESULTS: We included 20 studies, which used costs (n=16), Disability-Adjusted Life Years (DALYs) (n=3), employment rates (n=1) and school attendance (n=1) as indicators for burden. The costs per patient in 2022 USD ranged from 2,497 to 119,611. Indirect costs accounted for the largest share of total costs and consisted mainly of lost productivity. Medical costs accounted for the largest proportion of direct costs. DALYs increased from 0.714M in 2016 to 3.35M-5.77M in 2022, with the last DALYs based on different after-COVID ME/CFS onset rates.
CONCLUSIONS: ME/CFS is characterised by a high disease and economic burden. Between-study discrepancies in the costs were likely due to differences in the samples, methods, included costs and healthcare systems. As ME/CFS is assumed to be underdiagnosed, it is likely that the burden is underestimated.