Welcome to the English-language website for Japan ME Association.
Japan ME Association is a non-profit organization incorporated and based in Tokyo, Japan. We work on behalf of persons with myalgic encephalomyelitis (ME), also known as ME/CFS or chronic fatigue syndrome. Our mission is to help create a society where persons with ME may receive appropriate medical treatment and social security and to be able to live their lives in hope.
We highlight some of our latest activities and developments from Japan to share information and join our efforts with the international ME community in our common goals to raise accurate awareness about ME and to advance medical research to develop effective treatments for this disease.
Our Activities: Advocacy, Raising Awareness, and Stimulating Research
Japan ME Association (JMEA) directly petitions the Japanese National Diet and meets with elected members of the Japanese National Diet as well as members of the Japanese Ministry of Health, Labour and Welfare and local government agencies to request actions and government policies on behalf of persons with ME.
We successfully petitioned the Japanese Ministry of Health to commission a national ME/CFS Patient Survey, the first of its kind to be conducted in Japan. The survey exposed the nature and severity of disability of ME patients and revealed that 30% of patients are severely ill and are bedridden or close. A summary of the survey findings by our President, Mieko Shinohara, was published in the January 2017 issue of the International Association for CFS/ME (IACFS/ME) newsletter.
The Japanese National Diet adopted JMEA’s formal petitions to the National Diet requesting that the government take certain steps to make public disability assistance available to ME patients in 2014 and 2015. While the steps have yet to be fulfilled, this landmark result was achieved by JMEA’s lobbying of individual legislators and by our volunteers, who gathered nearly 35,000 handwritten signatures. The Diet also adopted our 2016 petition requesting that the government make improvements to the medical care of ME patients and to facilitate clinical drug trial research. We are now meeting with Diet members and gathering signatures for our 2018 petition.
Our advocacy also extends to all public medical and policy matters that affect ME patients in Japan. Most recently, we have publicly opposed the publication of proposed “Treatment Guidelines for ME/CFS in Japan,” which, among other problems, presents graded exercise therapy (GET) as its most highly-rated treatment recommendation.
JMEA works to raise accurate awareness about ME in Japan, where ME remains largely ignored and misunderstood as an illness of fatigue triggered by stress, and where accurate information about the disease is scarce, even among medical professionals.
Our Japanese website serves as a central information resource for ME patients in Japan, many of whom are unable to participate in the international online ME community due to an English-language skills barrier. We publish updated domestic and international ME news in Japanese both online and in print. One of our first priorities was to translate into Japanese the Canadian Consensus Criteria for ME/CFS, and to publish key international information to distribute at our meetings and public awareness events.
We are proud to announce the completion of our own documentary film on ME patients in Japan, “Hope to These Hands: The Reality of ME/CFS” (it is currently only in Japanese, though we hope to make an English-subtitled version), which we began screening in October 2017, and which we have planned to screen before medical associations, politicians, and the general public across Japan. Our public awareness events in the past have featured public screenings of Japanese-subtitled versions of the ME documentaries “Voices from the Shadows” and “I Remember Me,” in addition to contributing articles in medical journals and holding press conferences about our activities.
Stimulating Biomedical Research and Improving Medical Care
The Association also regularly meets with heads of Japanese medical associations and hosts patient booths at annual medical conferences to encourage researchers and clinicians to learn about ME. In recent years, we have cooperated with new ME research studies here in Japan.
In October 2016, we hosted an international academic symposium at Tokyo University for a Japanese medical professional audience, and were honoured to invite leading United States experts Dr. Anthony Komaroff and Dr. Nancy Klimas as our special guest speakers. We hope to continue to encourage dialogue between Japanese and international medical researchers to promote and advance research for ME/CFS.