Japan: ME/CFS in Japan

Pyrrhus

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The Japan ME Association has an English-language website:
https://mecfsjapan.com/

About the Japan ME Association:
Japan ME Association said:
Based in Tokyo, Japan, Japan ME Association (JMEA) advocates for medical research, improved medical care, and access to social security services on behalf of ME patients in Japan. Founded as a patient association in 2010 and incorporated as a Japanese Specified Non-Profit Corporation in 2012, our members consist of ME patients, their family members, and other individuals who wish to improve the medical prognosis and quality of life of ME patients. Our work is supported by a talented team of medical researcher and clinician board member and advisors.
About ME in Japan:
Japan ME Association said:
ME/CFS has long been regarded in Japan as a “fatigue” illness, and for the past 25 years, research has largely continued in this vein. As a direct consequence, severely ill patients have been ignored by medicine and have been denied access to public disability assistance by the government.
About their 2016 conference:
Japan ME Association said:
On October 23, 2016, the Association co-hosted an international academic symposium, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Towards Effective Treatments for ME/CFS as a Neuro-Immune Disease” at the Tokyo University Tetsumon Memorial Lecture Hall, where we welcomed Dr. Anthony Komaroff and Dr. Nancy Klimas from the United States as special guest speakers.
 

Pyrrhus

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Japan ME Association said:
Japan ME Association is pleased to announce the international release of “Hope to Our Hands: The Hidden Story of ME/CFS in Japan,” an English-subtitled version of our documentary film on ME patients in Japan. It may be streamed or downloaded on VIMEO here.

Originally created to raise awareness among government health policymakers and the general public in Japan and screened domestically since its completion in 2018, the new English-subtitled film (produced from an abridged version targeted to Japanese medical professionals) brings the film to an international audience for the first time.

The situation of Japanese ME/CFS patients has long been unknown outside Japan. Most Japanese patients lack the English skills to access online information from abroad. Amidst this isolation, the Japanese government and medical profession have continued to neglect the disease as a “fatigue” illness with psychogenic factors for the past 30 years. It is also the story of Japan ME Association, founded by Mieko Shinohara, who fell ill with ME while studying abroad in the United States, and patients’ efforts to create much-needed change.

Recommended by the Japan Medical Association president and the former Japanese Society for Neurology president and receiving the strong support of patients and doctors alike, it is our hope that in sharing the documentary, Japan can begin to join the international ME/CFS community to advocate for patients’ lives.

Watch the trailer for the video here:
https://vimeo.com/ondemand/hopetoourhands
(Watching the full video costs $0.99.)
 

nyanko_the_sane

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Yukey has a nice ME/CFS blog. It is in Japanese and English. He translates into English a cute webcomic called: Kuma-san's CFS Diary by Ms. Yurari

https://melifeislike.blog.jp/

Last year, Ms. Yurari's webcomic was compiled into a book, there is talk of an English edition. There was a successful crowdfunding campaign to send copies of the book to Japanese government health agencies to create awareness.
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gbells

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The Japan ME Association has an English-language website:
https://mecfsjapan.com/

About the Japan ME Association:


About ME in Japan:


About their 2016 conference:
Yeah we had the same thing in the USA. They start taking it seriously when the MDs and atheletes get the disease. Japanese people have a very strong work ethic so I can understand their resistance.
 

Pyrrhus

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A remarkably sympathetic article in a national Japanese newspaper:

Man in Japan with rare disease calls for understanding after being slandered online
https://mainichi.jp/english/articles/20210227/p2a/00m/0na/023000c

Excerpt:
Mainichi said:
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.
 

Pyrrhus

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Another remarkably sympathetic article in the national Japanese newspaper "Mainichi", this time about a link between ME and Long Covid!

Japanese experts suspect neuroimmune disease causing pain, fatigue as COVID-19 aftereffect
https://mainichi.jp/english/articles/20210310/p2a/00m/0sc/024000c

Excerpt:
Mainichi said:
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.
 

Pyrrhus

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Interesting Japanese websites:

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Information Site
https://mecfsinfo.net/
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) suddenly causes intense general malaise in people who used to live a normal life. It is a disease that does not recover even after resting and makes normal daily life extremely difficult. In addition, various symptoms such as low-grade fever, headache, muscle aches, weakness, poor thinking, and depression may occur. In severe cases, you may be bedridden or need help.

POTS and Dysautonomia Japan
https://potsanddysautonomiajapan.org/
POTS and Dysautonomia Japan is working to raise awareness, support patients, and promote research on postural orthostatic tachycardia syndrome (POTS) and its surrounding autonomic neuropathy (Dysautonomia). Postural orthostatic tachycardia syndrome (POTS) is a disease related to autonomic nerves and circulatory function that causes palpitations, shortness of breath, dizziness, light-headedness, and headaches when standing. When the symptoms become severe, it becomes difficult to attend school, work, and daily life, and social support may be required.
 

Pyrrhus

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The Japan ME Association invited Dr. Avindra Nath (United States) and Dr. Takashi Yamamura (Japan) to discuss ME/CFS and Long COVID. They spoke about research being conducted on ME/CFS and Long Covid in the U.S. and what progress has been made so far in Japan.