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Paper short abstract:

The talk focusses on the decades-long failure of the medical system with regard to the diagnosis and therapy of the disease ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Through ethnographic analysis of patients experiences, medical (non-)knowledge regimes are critically examined.

Paper long abstract:

My contribution takes a look at the decades-long failure of the international and here specifically German medical system with regard to the diagnosis and therapy of the disease ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Although this systemic autoimmune disease has been recognized by the WHO since 1969, it is largely ignored by medical theory and practice, with devastating consequences for the more than 250,000 people affected in Germany alone. In the course of the Covid-19 pandemic, the disease came to public attention, because ME/CFS is primarily caused by viruses and conjectured to be part of the post-Covid syndrome. The post-Covid syndrome is estimated to affect one in ten people who were exposed to the Corona virus, and has become a serious problem for the medical system, which lacks both trained medical staff and suitable treatment methods. My presentation will focus on the experiences of patients whose medical histories are related to viral infections, but began years or decades before Covid-19. On the one hand, they provide a harrowing insight into the paths of suffering and the lack of medical treatment options, and on the other hand, they show medical sociological tendencies to psychologize physical causes. Gender-related aspects play a particularly striking role here–predominantly young female patients report stigmatization and not being taken seriously, which perpetuates culturally handed-down role stereotypes of nervous-hysterical female patients. At the same time, medical non-knowledge regimes and power relations in the field of neurology are critically examined, which have contributed to the systematic denial of ME/CFS.