By overviewing the results of the survey on ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) patients, this study shows that the patients living with ME/CFS have fallen into the structurally isolated situation in Japan and need to be integrated to the society.
ME/CFS affected more than three hundred thousand people in Japan. ME/CFS is not just being heavily tired but frequently interferes with people’s lives by making them dysfunctional. Furthermore, patients are not just dealing with extreme fatigue but with a wide range of other symptoms including sudden fatigue, sleep without refreshing, muscle and joint aches without swelling, various patterns of headaches, sore throat, and memory problems/inability to concentrate. Researchers have not yet identified the underlying cause of ME/CFS, and so far this condition is incurable.
Despite of the severe symptom, only a small percentage of patients can be diagnosed as ME/ CFS; this is often considered as malingering. Therefore, ME/CFS patients have been kept away from medical treatment and social services. Even worse, patients are distrusted by their families and friends and isolated due to the nature of this illness.
To overcome this situation the Japan ME/CFS Association was established in February 2010 and has enacted various activities making public awareness on ME/CFS, promoting biological research on ME/CFS, and advocating to the central and local government. These activities of the patient’s organization may correspond to examples of an embodying process of Kyosei = Conviviality; such an activity would become a connector among many stakeholders: government officials, medical professionals, clinical practitioners, and lab researchers. They were initially separated, but, if integrated, they would be able to realize Kyosei Syakai, a society where all people live together without discrimination and/or disparity.
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