Burden of Disease in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Scoping Review.

Vester, Patricia, Boudouroglou-Walter, Stefanos, Schreyögg, Jonas et al. · Applied health economics and health policy · 2026 · DOI

Quick Summary

This study looked at how much ME/CFS costs people and society, and how much it affects quality of life. Researchers found that ME/CFS causes significant health problems, lost work and school time, and costs thousands to hundreds of thousands of dollars per patient per year. The biggest costs come from lost income and productivity rather than direct medical care.

Why It Matters

This comprehensive review demonstrates that ME/CFS imposes substantial economic and social burden comparable to other serious chronic diseases, strengthening the case for increased research funding and healthcare resources. For patients, these findings validate the severity of ME/CFS and may support advocacy efforts and disability claims by quantifying real-world impact.

Observed Findings

Annual per-patient costs ranged from USD 2,916 to USD 119,611 across included studies.
Indirect costs (lost work/productivity) accounted for the largest proportion of total disease burden.
US DALY estimates increased substantially from 0.714 million in 2016 to 5.77 million in 2022.
Women are affected three times as often as men; prevalence in the USA is approximately 0.42% of adults.
Only 20 studies met inclusion criteria, indicating limited research on ME/CFS disease burden globally.

Inferred Conclusions

ME/CFS imposes substantial health, social, and economic burden comparable to other serious chronic conditions.
Large discrepancies in cost and burden estimates reflect differences in study methodology, healthcare systems, and case definitions rather than true variation in disease impact.
Actual disease burden is likely underestimated due to widespread underdiagnosis of ME/CFS.

Remaining Questions

What are the specific cost drivers for individual ME/CFS patients, and how do they vary by disease severity or symptom profile?
How will ME/CFS burden estimates change as post-COVID ME/CFS cases are identified and diagnosed?
What standardized methodology should be used across countries to enable meaningful comparison of burden estimates?
How do indirect costs differ between employed, partially disabled, and completely disabled patients?

What This Study Does Not Prove

This scoping review does not establish the causes of ME/CFS or prove which specific symptoms drive the largest costs. It cannot determine whether current cost estimates accurately reflect true burden, since the review notes ME/CFS is likely underdiagnosed, meaning actual costs may be substantially higher than reported. The heterogeneity of methods means estimates are not directly comparable across studies.

Metadata

DOI: 10.1007/s40258-025-01006-2
PMID: 40986167
Review status: Editor reviewed
Evidence level: Established evidence from major reviews, guidelines, or evidence maps
Last updated: 7 April 2026