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.
Kida was familiar with social media, especially Facebook, as a tool to connect with friends in his hometown and overseas. It was on social media that he saw horrible words directed at him. Among the messages were, "He's insane, isn't he?" and, "If his relatives don't get him the right treatment, his paranoia will get worse," and, "A certain intractable disease, in a sense, that may not exist (lol)," and also, "An intractable disease called Munchausen's syndrome."
In February 2019, a friend contacted Kida and learned about these Twitter posts by four women he knew. They were replies to one person's tweets, and the exchanges were public. Although the women were acquaintances, there were individuals among them who he'd not spoken to for decades. But Kida shared a community with them, so they were technically connected. Though the tweets did not mention him by name, it would be obvious to people he knew that what they were writing was slandering him. Looking back, he realized this had actually begun in fall 2017.
"It would have been fine if it had been a private discussion, but I was being made fun of in an open way visible to the world. The illness was painful, but the lack of understanding was the hardest of all," Kida said about his feelings at the time.
At first, he thought: "We're all adults, so I can just ask them to delete the posts and give me a simple apology." But he couldn't overlook the posts mentioning his family as well. After some consideration, he told the women directly that he wanted them to delete the posts, and he also spoke with the police. After going through criminal procedures, the posts were finally removed, but there has been no apology.
"I was able to get this far with the full support from my family, and warm consideration from my company. But, I think that what happened to me is something that some people might not be able to bear and could lose heart over," said Kida.
He continued, "We must not allow slander that goes as far as denying someone's personality simply because you don't understand the disease. I want to eliminate prejudice and discrimination."
It has been pointed out that the name "chronic fatigue syndrome" for ME/CFS can easily lead to misunderstanding and prejudice, including views such as, "People who have it are just tired slackers."
"It involves pain and suffering on a completely different level to the word 'fatigue,' but people tend to misunderstand that it can be cured if you just try hard enough," Kida said.
The CFS Support Network, which is made up of patients and others, has received many testimonials from people who say they cannot even tell their families about the disease. "In some cases, parents of children with CFS are unable to tell relatives about the condition, and keep it as a family secret," said Maki Ishikawa, 49, who also has the disease and chairs the network.
"I think that in the past few years, wider awareness-raising activities have led to slander and prejudice becoming less prevalent. But even so, there is still a tendency for patients to be isolated, because people around them see them as 'running away' or 'cheating and taking time off,'" she continued.
To eliminate this situation, Ishikawa stressed that it is "essential to promote research on testing and treatment methods."
A 2014 survey by the Ministry of Health, Labor and Welfare found that about 30% of ME/CFS patients said they lie down for more than half the day, are unable to perform daily activities and require assistance. The disease makes it difficult to lead a social life, but testing and treatment methods have yet to be established. It is also not on the list of "designated intractable diseases" for which medical expenses are subsidized.
"If there is no scientific proof of the disease through testing, and no reliable treatment, misunderstanding will continue spreading and the number of specialized clinics won't increase. I hope the government allocates a proper budget for it," Ishikawa said.
The network, along with three other ME/CFS patient groups, is calling on the health ministry to improve the environment for patients to receive specialized medical examinations and treatments anywhere in Japan, and to post correct information about the disease on the health ministry website.
(Japanese original by Haruka Udagawa, Integrated Digital News Center)