An Overview of Severe Myalgic Encephalomyelitis

TL;DR

This paper discusses severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disabling condition with no effective treatments, emphasizing the need for focused biomedical research.

Contribution

The paper highlights the lack of research and effective treatments for ME/CFS and calls for advanced studies to understand its mechanisms.

Findings

ME/CFS lacks a diagnostic test but can be documented using 2-day cardiopulmonary exercise testing in research.

Severe ME/CFS is more disabling than many diseases, with patients requiring constant care and living in isolated conditions.

The pandemic has increased post-infectious cases of ME/CFS, underscoring the need for dedicated research.

Abstract

In this article, we have reviewed the literature on severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a clinical diagnosis in the absence of a diagnostic test. However, in research settings and disability disputes, 2-day cardiopulmonary exercise testing can be used to diagnose and document the abnormal response to exercise. Biomedical research into this disease has been scarce and underfunded for decades. Consequently, there are no effective treatments. In its most severe form, it is more disabling than many other diseases, and patients are bedbound 24/7, dependent on carers, and spend their days in dark and quiet rooms. Even the soft sound of a human voice can lead to further deterioration. Some of the very severely ill suffer from life-threatening malnutrition and need to be tube-fed. The COVID-19 pandemic has led to a sharp increase in the number of patients with post-infectious diseases, and many of them fulfill ME/CFS criteria. Dedicated, focused research using advanced medical technologies is needed to gain further understanding of the underlying disease mechanism. This will enable us to find effective pharmacological treatments and address the unmet medical needs of these very ill people.