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Hope to our Hands: The Hidden Story of ME/CFS in Japan (2020)

A moving documentary of those in Japan living with ME/CFS who are struggling to receive acknowledgement, medical care and support.

Documentary in Japanese, with English subtitles. International release June 13, 2020.

Available worldwide, pay-per-view streaming or download on VIMEO.

Duration: 43 mins

Trailer below: 4 mins


Synopsis

"Recommended by Japan Medical Association President Dr Yoshitake Yokokura and former Japanese Society of Neurology president Dr Ryosuke Takahashi, “Hope to Our Hands” depicts the lives of patients living with the devastating neuroimmune disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Japan.

The situation of ME/CFS in Japan has been unknown outside Japan. Most patients lack the English skills to access online information from abroad. Amidst this isolation, the Japanese government and medical profession have continued to treat the disease as a “fatigue” illness with psychogenic factors for nearly 30 years. The vast majority of an estimated 100,000 patients struggle to receive a diagnosis, only to be dismissed by doctors who do not recognize it as a serious biomedical disease. Severely ill patients lack adequate medical care and access to disability assistance.

It is also the story of a patient association created in 2010 by a patient who fell ill while living in the United States. A pillar of Japan ME Association’s work is to make key resources such as the 2003 Canadian Consensus Criteria and information on global ME/CFS developments available in Japanese and to use this information to lobby the government and medical scientists to advocate for patients. There are signs of hope, with new ME/CFS research now being funded at Japan’s National Centre for Neurology (NCNP).

The film has received strong support in screenings across Japan for its focused depiction of ME/CFS. Patients said they felt “seen” for the first time and patients and doctors alike expressed their desire for the film to be viewed as widely as possible. In sharing the film, it is our hope that Japan can begin to join the international ME/CFS community to advocate for patients’ lives."

Further information at: mecfsjapan.com

- An illness that doctors don't know about.

- Everyone was saying the same thing. Doctors don't understand. Family members don't understand. We're struggling financially because we aren't able to get disability benefits.

- In the end telling people the name [chronic fatigue syndrome] causes more misunderstanding about my condition.

Hope to our Hands: The Hidden Story of ME/CFS in Japan

© Japan ME Association, Japan.

Last edited: 26 December, 2020