Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic multisystem disorder that typically leads to a substantial reduction in social participation and quality of life. Individuals with severe or very severe ME/CFS are confined to their homes or beds, and some require nursing care. The cardinal symptoms are profound fatigue with impaired daily functioning, as well as a worsening of symptoms following even minor physical or cognitive exertion (post-exertional malaise, PEM). Fatigue and exercise intolerance typically occur alongside sleep disturbances, pain, cognitive impairment affecting concentration and memory, circulatory symptoms, and flu-like complaints. The pathogenesis is not yet fully understood, and there is a lack of validated biomarkers and causal treatment approaches. Consequently, diagnosis and disease management are symptom-based and resource-intensive. To improve patient care, substantially more clinical, translational, and health services research within a network of dedicated centers is required. 

In the BAYNET FOR ME/CFS project, coordinated by the Munich Chronic Fatigue Center (MCFC), we combined the synergistic expertise of Bavarian and other collaborating partners to generate new data on the epidemiology, pathogenesis, diagnosis, and treatment of ME/CFS in children, adolescents, and young adults, as well as to develop and evaluate novel care services.

The individual subprojects (SPs) aimed to analyse health insurance data on healthcare provision for young patients (SP1); to achieve detailed phenotyping of clinical presentations through clinical and laboratory assessments (e.g., questionnaires, functional tests, optical coherence tomography angiography, and flow cytometry) (SP2); to implement telemedicine-supported physical and occupational therapy and actigraphy-based monitoring (SP3); and to develop and evaluate individualized, cross-sectoral concepts for ongoing interdisciplinary, multiprofessional care (SP4).

For the first time, the project brought together all six Bavarian universities in a joint research initiative on ME/CFS and supported the establishment of a second paediatric ME/CFS centre in Würzburg. The project received advisory input and supported by various patient advocacy organisations.