Welcome to the English-language website for Japan ME Association.
Japan ME Association (JMEA) is a non-profit organization 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 effective medical treatment and social security, and where they may be able to live in hope of a cure. We share some of our latest activities and news from Japan here to connect with the international ME community in our common goals to raise awareness and to advance medical research to develop effective treatments.
Our Activities: Advocacy, Raising Awareness, and Stimulating Research
JMEA directly petitions the Japanese National Diet and meets with elected Diet members as well as Ministry of Health and local government agency officials to request government actions and policies on behalf of persons with ME.
We successfully petitioned the 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 the disability of ME patients, with 30% of patients severely ill and bedridden or close. Our summary of the survey findings was published in the January 2017 issue of the International Association for CFS/ME (IACFS/ME) newsletter.
The Japanese government adopted JMEA’s formal petitions to the National Diet requesting that the government take 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 member and outside volunteers, who gathered nearly 35,000 handwritten signatures. The following year, the Diet adopted our 2016 petition requesting improvements to the medical care of patients and facilitation of clinical drug trial research. Our 2018 petition was adopted in July 2018.
Our advocacy extends to the broad spectrum of public medicine and policy matters that affect ME patients in Japan. At the end of 2017, we publicly opposed the publication of proposed “Treatment Guidelines for ME/CFS for Japan (Draft)” which presented graded exercise therapy (GET) as its most highly-rated treatment, among other serious problems. We continue to monitor the status of this document.
JMEA works to raise accurate awareness about ME in Japan, where ME remains ignored and largely misunderstood as an illness of fatigue, and where accurate information about the disease is scarce among medical professionals and the public.
Our Japanese website serves as a central resource for patients in Japan, many of whom are unable to access or to participate in the international online ME community due to an English-language barrier. We publish the latest global ME news in Japanese on our website as well as in materials that we distribute to the public.
We filmed our own documentary film on severe ME patients in Japan, “Hope to These Hands,” which we began screening in October 2017 before medical associations, legislators, and at public awareness events across Japan, also distributing the film on DVD as a resource for researchers and clinicians to better understand ME and the situation faced by ME patients in Japan. We are currently at work on an English-subtitled abridged version of the film.
We have also hosted panel discussions and screenings of Japanese-subtitled versions of the documentaries “Voices from the Shadows” and “I Remember Me,” in addition to contributing opinion letters, appearing in media, and convening press conferences at the Japanese Ministry of Health press club about domestic and international ME developments.
Stimulating Biomedical Research and Improving Medical Care
JMEA 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 audience and were honored 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 ME research.