Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a Complex and Neglected Neuro-Immunological Disease 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe, chronic, neuro-immunologic disease that affects about 0.2–1% of the population worldwide. However, the lack of an objective diagnostic tool has posed a significant challenge to accurately estimating prevalence. The triggers of ME/CFS are heterogeneous. For many cases, the disease is triggered by viral or bacterial infections such as Epstein-Barr virus, enteroviruses, Borrelia burgdorferi (Lyme disease), or more recently SARS-CoV-2. With the COVID-19 pandemic, there was a notable increase in prevalence. In a significant proportion of individuals with ME/CFS, no clear infectious trigger could be identified.

A complex and hidden condition

Symptoms of ME/CFS include post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment (brain fog), pain in muscles and joints, orthostatic intolerance, gastrointestinal issues, and hypersensitivities to light, sound, and touch. PEM-related crashes can last for days, weeks, or even months and often force individuals to carefully ration their energy in a strategy known as “pacing”. Since 60% of the people with ME/CFS are unable to work, 25% are bedridden or housebound, and severe cases may be unable to tolerate external stimuli, the personal, societal, and economic consequences are immense. The disease can lead to social isolation and dependence on caregivers.

The condition involves multiple organ systems, including the immune system, the central and autonomic nervous systems, and metabolic pathways. There is still no diagnostic test available. ME/CFS is diagnosed clinically (by exclusions), using standardized criteria such as the Canadian Consensus Criteria or the International Consensus Criteria. A lack of diagnostic clarity contributes to under- and misdiagnoses.

While up to 60% of children experience spontaneous recovery, this proportion is considerably lower among adults. Only about 5–10% of adult patients show substantial improvement or recovery over time, and many experience a lifelong relapsing-remitting course or are deteriorating.

The economic costs are substantial. In the United States of America (USA), a 2023 government health brief cites a figure of $18–$51 billion annually. In Germany, costs exceed €63 billion annually (1.5% of total GDP).

An initiative for longitudinal and interdisciplinary research

Although a significant number of people are affected, the disease remains largely hidden. Many patients are unable to leave their homes, and some are bedbound, making it difficult to access care or participate in research. No curative treatment exists, and symptom management is often fragmented. The burden also extends to families and caregivers.

Several national initiatives have been established in countries such as the USA, Germany, the United Kingdom, and Norway. In Switzerland, no comparable initiative exists, and research remains scattered, although several political motions have been made without success so far. In addition, no national patient registry or longitudinal research infrastructure exists. A standardized, longitudinal follow-up by interdisciplinary teams is urgently needed to improve care and generate essential data for research.

Objectives

This project seeks to establish Switzerland’s first national research platform for ME/CFS, addressing a critical gap in knowledge and care for this complex, under-researched disease:

• Formation of expert group and continuous literature reviews.
• Building a longitudinal ME/CFS cohort to support clinical and epidemiological studies.
• Analyzing patient data to identify symptom clusters and disease patterns.
• Public and professional outreach through educational materials and presentations, including at the Geneva Health Forum.