Multi-Center Registry for ME/CFS

Phenotyping ME/CFS: Medical History

Routine assessment of the medical history, such as current and previous medication, vaccinations, comorbidities, and more, to achieve a profound ME/CFS phenotype.

Assessment of routine physical examination findings

Routine physical examination to achieve a profound and detailed ME/CFS phenotype.

Number of participants with abnormal laboratory tests results

Measurement of a routine set of laboratory parameters including blood tests (cell count\[cell/µl\], C-reactive protein \[mg/dl\], immunoglobulins A/M/G \[md/dl\], antinuclear antibodies \[titer\], etc.) and urine/stool analysis (e.g. calprotectin \[mg/kg\], positive hemoglobin in urine test stripe) to achieve a profound ME/CFS phenotype.

Number of participants with abnormal technical exam results

Technical exams (e.g. restrictive and obstructive pattern in pulmonary function tests, conduction in electrocardiography, ultrasound imaging, magnetic resonance imaging, etc.) will be performed as indicated to achieve a profound and detailed ME/CFS phenotype.

Evaluation of Patient Journeys

Patients' journeys will be analyzed regarding the specialization of involved physicians visited, time to diagnosis, and time to treatment.

Definition of Sub-cohorts

Using routine data, sub-cohorts will be identified.

Prevalence of Comorbidities

Prevalence of comorbidities of patients with ME/CFS will be analyzed.

Identification of Candidate Prognostic Markers

Correlation of routine clinical data (e.g., medical history, routine laboratory, and physical examination) with clinical outcome (e.g., health-related quality of life, disease severity, and social participation).