Burden of Disease in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2025, Vester

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Senior Member (Voting Rights)
Comment: unfortunately the information that is freely available is not very informative in terms of the substance of this piece.


Abstract only
Volume 28, Issue 6, Supplement 1S77July 2025

EE81 Burden of Disease in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)​

Patricia Vester, M.Sc.<a>1</a> ∙ Stefanos Boudouroglou-Walter, M.Sc.<a>1</a> ∙ Jonas Schreyögg, Prof. Dr.<a>2</a> ∙ Chantal Wieting, B.Sc.<a>1</a> ∙ Christine Blome, PD Dr.<a>1</a>
Affiliations & Notes
1University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany
2Hamburg Center for Health Economics (HCHE), Hamburg, Germany


Show Outline

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?
 
Now published:

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

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Objective
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious chronic and complex multi-system disease characterised by symptoms such as post-exertional malaise, fatigue, cognitive impairment and pain. Diagnosis is based on international consensus criteria, and no curative treatment is available.

In the USA, its prevalence is estimated at 0.42% among adults, with women affected three times as often as men. Prevalence is expected to increase due to the COVID-19 pandemic. In addition to its severe symptoms, ME/CFS has a substantial economic impact. This scoping review aimed to systematically examine the global health, social and economic burden of ME/CFS.

Methods
We conducted a systematic literature search following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) guidelines in six databases and supplemented it with a citation search. We assessed study quality using a modified version of the Mixed Methods Appraisal Tool.

Results
We included 20 studies that assessed costs (n = 16), disability-adjusted life years (DALYs) (n = 3), employment rates (n = 1), and school attendance (n = 1) as indicators of disease burden.

Reported costs per patient ranged from USD 2,916 to USD 119,611, with indirect costs accounting for the largest proportion. DALYs reported for the USA ranged from 0.714 million in 2016 to 5.77 million in 2022.

Conclusion
ME/CFS imposes a substantial health, social and economic burden of disease. Discrepancies in estimates are probably due to differences in study samples, methodologies, cost components, and healthcare systems. Because ME/CFS is assumed to be underdiagnosed, its true burden may be even higher.

Web | PDF | Applied Health Economics and Health Policy | Open Access
 
Regardless of the range for the estimates, the bottom line is that it’s very expensive to have people be severely disabled for life, and society will profit on investments in finding treatments and cures.

The net increase in taxable income is worth it alone, even if you don’t care for the human suffering.
 
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