Clinical care for ME/CFS

Dr Michael Stingl presented his experience from many years of outpatient treatment of ME/CFS patients. Regarding diagnostics, he recommended focusing on Post-Exertional Malaise (PEM) and limiting differential diagnostic tests to a minimum in order to minimise costs and the symptomatic burden for patients. Regarding pacing, he explained that individual analyses are necessary, as the effectiveness of different pacing strategies can change over time. Diagnostics for comorbidities should also be included, as they may provide treatment options to reduce symptoms. Common comorbidities include Postural Tachycardia Syndrome (POTS), Small Fiber Neuropathy (SFN), Mast Cell Activation Syndrome (MCAS), immunodeficiency, hypermobility, and psychological symptoms. However, a psychological assessment should only be performed by experienced neurologists/psychiatrists who are knowledgeable about ME/CFS, able to classify symptoms accordingly, and do not psychologise the illness. Off-label medication can be helpful, but should be used cautiously due to the lack of empirical evidence for its effectiveness in ME/CFS. Drug dosage should be increased slowly and gradually, and if no improvement is observed, the drug should be discontinued. The main goal of off-label medication is to raise the threshold for the occurrence of PEM, which can significantly improve quality of life. Supporting patients with social security issues is also important - particularly by documenting functional impairment and applying for medical assistance.