TOKYO -- Discrimination, prejudice and a lack of understanding about diseases sometimes causes patients more suffering than the illnesses themselves. This was true for one case that played out on social media.
Yusuke Kida, 43, lives in Fujisawa, Kanagawa Prefecture, and has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The disease causes severe pain across the body, but its name is not well known and its symptoms are hard to recognize from the outside. He agreed to be interviewed by the Mainichi Shimbun with the hope to "shed some light on people suffering in the same way."
Kida was developing plants in Africa and the Middle East for a major engineering company when his health began deteriorating around summer 2017. His symptoms, which were flu-like and included fatigue and a fever, would not go away.
A doctor of internal medicine he saw could not identify the illness, but an infectious disease specialist found that it was "chronic EB virus infection." Although it's said that more than 90% of adults carry the virus, it is a frightening disease that can in rare cases trigger full body organ failure. Kida couldn't find a treatment and even considered a bone marrow transplant, but once he developed antibodies against the virus he started to feel better.
But around winter 2018, he began to feel all over his body intermittent severe pain that left him writhing in agony. He had to endure it for hours at a time. Kida used to enjoy exercise, was well-built and confident in his strength.
But, he recalls that the intense pain made him feel "like all my strength was being taken away." He couldn't eat or bathe, and had to crawl around the house. He asked his parents to live with him, and together with his wife they cared for and supported him.
Despite the severity of his symptoms, it was difficult to find a name for his condition. In fall 2019, more than six months after its onset, he was diagnosed with ME/CFS by Chiba University Hospital, the seventh he had visited. But even though he now knew the disease's name, there was no effective treatment. Amid a lack of improvement in his symptoms, Kida and his family began suffering even more when they became targets of slander on Twitter.
