The German Multicenter Registry for ME/CFS (MECFS-R).

Area of Science:

• Clinical Research
• Epidemiology
• Translational Medicine

Background:

• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, debilitating multisystemic disease with an incompletely understood cause.
• Existing research and clinical data are fragmented, hindering progress in understanding and treating ME/CFS.

Purpose of the Study:

• To establish a multicenter German ME/CFS registry (MECFS-R) for comprehensive data collection.
• To facilitate future clinical and translational research on ME/CFS.
• To present the protocol and initial findings from a pilot cohort.

Main Methods:

• Established a web-based, multilayer-secured database for longitudinal data collection.
• Collected clinical, epidemiological, and laboratory data from adult, adolescent, and pediatric ME/CFS patients.
• Included data from 174 patients diagnosed at two specialized tertiary fatigue centers.

Main Results:

• A viral trigger was identified in 92.0% of patients, with SARS-CoV-2 implicated in nearly half.
• Patients reported severe functional and social impairment (median Bell Score 30.0).
• Health-related quality of life was poor, with low scores on the Short Form-36 physical function subscale (mean 40.4).

Conclusions:

• The MECFS-R offers valuable clinical insights for ME/CFS research and healthcare.
• The registry, combined with a biobank, supports research into ME/CFS pathogenesis, diagnostics, and therapeutics.
• The findings highlight the significant impact of ME/CFS on patient function and quality of life.