News from Japan

Sly Saint · Mar 1, 2021

Moved posts

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."
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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."
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full article here:
https://mainichi.jp/english/articles/20210227/p2a/00m/0na/023000c

Trish · Mar 1, 2021

Sad to see the situation is so bad for people with ME/CFS in Japan.

Sid · Mar 1, 2021

Brutal. My best wishes to patients in Japan.

Mij · Mar 1, 2021

I don't want to start a new thread, but felt this tweet was related to the topic.

https://twitter.com/user/status/1366020207018442755

DokaGirl · Mar 1, 2021

Mij said: ↑

I don't want to start a new thread, but felt this tweet was related to the topic.

https://twitter.com/user/status/1366020207018442755

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Thank you @Sly Saint for posting this.
We need to see how pwME are treated in other countries - sad to say it's the usual appalling mess.

I agree @Sid brutal.

Thanks @Mij for posting this hopeful message from a doctor.

Re the article from Japan, it's disheartening to see how far we still have to go for the public, the medical community and governments for pwME to just be treated with respect! (And, some individuals seem to need and delight in picking on others. Something the powers that be could help alleviate if they cared to.)

shak8 · Mar 1, 2021

Cultural factors in Japan make ME more than a nightmare.

Sid · Mar 1, 2021

DokaGirl said: ↑

Re the article from Japan, it's disheartening to see how far we still have to go for the public, the medical community and governments for pwME to just be treated with respect!
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Every time I get disheartened about how bad thing are here in the Anglosphere for PWME I see an article like this and realise things can be MUCH worse in many places. I find that the society I live in is too passive-aggressive and hypocritical for people to just straight up hurl abuse at me like what this poor chap in Japan experienced. I tend to just get shunned rather than receive outpourings of vile verbal/written abuse, though that has happened too on occasion, especially from elderly male MDs.

DokaGirl · Mar 2, 2021

@Sid

I'm in the Anglosphere, just across the pond. You said it, passive-aggressive. Although some of my nearest and dearest have been less than supportive, to put it quite mildly. And, I've also had unfortunate experiences with some senior physicians who have dismissed ME as not a serious physiological disease. No one that I can recall has hurled insults at me, but a handful of staff in one medical facility were unpleasant in a range of ways.

There is something nagging at me though. I don't count myself lucky with my experiences. Some of which have been quite threatening. On the other hand, sometimes the ME situation is now more understood. Things are slowly improving, but we still have a long way to go.

Hutan · Mar 10, 2021

Interesting to see this Nikkan Gendai Healthcare article which seems to have no problem in labelling the post-Covid syndrome as ME/CFS. It mentions diagnostic symptoms and treatments.

"Myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS)" is attracting attention as a sequela of the new coronavirus. We spoke with Dr. Takashi Yamamura, director of the Immunology Research Department, National Center of Neurology and Psychiatry, National Center of Neurology and Psychiatry, who is a leading expert in ME / CFS treatment and research.
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Linked on the Long Covid thread: Possibility of ME or PVFS after COVID-19, Long Covid

Wyva · Mar 11, 2021

Japanese experts suspect neuroimmune disease causing pain, fatigue as COVID-19 aftereffect

https://mainichi.jp/english/articles/20210310/p2a/00m/0sc/024000c

"TOKYO -- Many coronavirus patients continue to feel fatigued after they no longer have the virus, so much so that it is difficult for them to carry on with their everyday lives -- a symptom that is believed to be an aftereffect of COVID-19.

It is highly suspected that such symptoms are caused by a neuroimmune disease called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Experts in Japan and overseas are sounding the alarm, with one saying, "There is a good chance that the new coronavirus is acting as a trigger." The Mainichi Shimbun looked into the link between COVID-19 and ME/CFS, a disease for which patients are eagerly awaiting the establishment of treatment."

This is how it begins but the entire article is about the possible connection with ME/CFS.

Snowdrop · Mar 11, 2021

I don't know if this is posted elsewhere but it gives some overview of what the Japanese ME association is trying to accomplish for ME sufferers there:

https://mecfsjapan.com/

Hutan · Nov 9, 2021

Interesting ME/CFS study out from a Japanese team looking at B cells
Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al

The use of three criteria (Fukuda, CCC and ICC) to select the ME/CFS participants and a good description of ME/CFS in the abstract suggests that the hospital involved might have clinicians with a decent awareness of the illness.

Edit - one of the authors of this paper is Dr Takashi Yamamura - see post #15 below about a video of a conversation between him and Dr Nath.

Hutan · Apr 10, 2021

A study by Leonard Jason's team compares Japanese and US patients:
Journal of Preventive Medicine & Healthcare: A Comparison of Patients with CFS and ME from USA and Japan - 2021 - Jason et al

Disappointing to not see a Japanese author on the team; it would be interesting to get feedback on the conclusions of the study from Japanese members.

Hutan · Aug 9, 2021

Prevalence of Chronic Fatigue Syndrome (CFS) in Korea and Japan: A Meta-Analysis, 2021, Lim an Son

What it says on the tin.

Hutan · Nov 9, 2021

Very interesting video from the Japan ME Association with a conversation between Avi Nath and Takashi Yamamura. Link to the thread here:
Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al
The President of the Japan ME Association, Miyako Shinohara (apologies, I almost certainly have that wrong), made some comments about ME/CFS and Long Covid in Japan that I'll summarise here.

It took a long time for Long Covid to be recognised as a medical condition in Japan. Few people are making the connection between ME/CFS and Long Covid. Government funding for Long Covid research has not recognised the connection. Long Covid is now getting more attention, but very little mention of ME/CFS. (So, more or less like everywhere really.)

Sly Saint · Nov 25, 2021

Japanese youths suffering fatigue from aftereffects of COVID infection

TOKYO -- Many young people in Japan have been suffering from serious aftereffects from COVID-19 infection, even those who only initially showed mild symptoms.

The various aftereffects of COVID-19 include symptoms of hair loss, smell disorders and fatigue, and there are many points that remain unclear. The Mainichi Shimbun delved into the current state of COVID-19 aftereffects among the young generation, amid concerns that patients suffering from such symptoms will increase following this summer's fifth coronavirus wave.

"I feel like I'm living in an alternate world," muttered a nurse's 13-year-old son as they were taking a meal. The 50-year-old woman living in the city of Ebina, Kanagawa Prefecture, was startled to hear this from her second oldest son, a second-year student in junior high, who is the only family member currently suffering from strong fatigue, taste disorders and other aftereffects even after three months have passed since the entire family of five contracted the coronavirus in late August and the boy was diagnosed with "mild symptoms."

The nurse's son spends many days confined to bed throughout the whole day, and has apparently not been able to go to school for the most part after the start of the second term. The nurse could not hide her concern, and said, "You shouldn't underestimate (the coronavirus) because they're kids or because they had light symptoms. What's going to happen to his life moving forward? My child has been unable to go to school due to the coronavirus."

A 16-year-old first-year high school student from Aichi Prefecture whose family is believed to have been infected with the coronavirus in May last year has also been suffering from symptoms including dizziness for over a year. The family doctor diagnosed the girl with a neuroimmune disease called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a type of aftereffect involving a prolonged state of fatigue so intense that it raises difficulties in leading a regular life.
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https://mainichi.jp/english/articles/20211124/p2a/00m/0na/018000c

Hutan · Jan 28, 2022

https://www.japantimes.co.jp/news/2021/10/07/national/long-covid-japan-patients/
You may need a free account to read it. It talks about the rise in popularity of kampo medicine (Japanese traditional medicine with herbs) as a treatment for Long Covid.

Odaguchi says about 80% to 90% of patients prescribed with the clinic’s specialized kampo medicine treatment have seen their conditions improve. Still, some have symptoms lasting for more than six months. The clinic declined to make any of its patients available for an interview.

Amid growing demand, Juntendo University Hospital in Tokyo opened a new kampo outpatient program for long COVID patients on Oct. 1. The hospital is planning to treat long-haulers with kampo medicine and Western medicine, depending on an individual’s symptoms.

Shigeru Omi, the government’s top coronavirus adviser, has called on young people to take thorough measures to prevent infection as new variants have made them susceptible to severe disease and lasting symptoms.

“Even young people can suffer from serious illness and even those who had only mild or no symptoms can have lingering symptoms,” he told his followers during an Instagram Live appearance in late September. Omi urged young people to get vaccinated in order to protect themselves.
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rvallee · May 26, 2022

https://twitter.com/user/status/1529649255593705472

Hutan · May 31, 2022

'Will I ever be cured?': The agonizing long-term effects of COVID-19
Sayako Akita , Feb 2022
Article in The Japan Times

Covers EAT (Epipharangeal Abrasive Therapy), which discussed more here:
Epipharyngeal Abrasive Therapy (EAT) Has Potential as a Novel Method for Long COVID Treatment, 2022, Imai et al

Also mentions a couple of clinics (I think not associated with that therapy):

According to physician Koichi Hirahata of the Hirahata Clinic in Tokyo, who is familiar with the aftereffects of COVID-19, patients with symptoms of so-called long COVID-19 can in some cases end up bedridden, with their illness evolving into what is commonly known as chronic fatigue syndrome (CFS).

Discussing my symptoms with me, Hirahata advised me to take a leave of absence from work. Prescribing strict bed rest, he said that if I didn’t rest up, I would instead end up bedridden.
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At the end of last year, I visited the National Center of Neurology and Psychiatry in Tokyo, which has an outpatient clinic for those suffering from long-COVID-19 symptoms, to discuss my condition.

Wakiro Sato, the doctor who examined me, said, “There are reports that fewer people complain of symptoms as time passes after (COVID-19) infection, but for other people, recovery is unsatisfactory. It is unknown to what extent you will recover.”
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We've seen quite a bit from Wakiro Sato I think. Most recently he was one of the named reviewers of Professor Tate's paper.

Ravn · Jun 1, 2022

Japan Times said:

Discussing my symptoms with me, Hirahata advised me to take a leave of absence from work. Prescribing strict bed rest, he said that if I didn’t rest up, I would instead end up bedridden.
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This suggests that the fear suffered by many doctors of advising bed rest and of scaring patients with a harsh prognosis is a Western cultural phenomenon.

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