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 are able to receive effective medical care and social security, and where they can live in hope of returning to their healthy lives. We share some of our latest activities and news with the international ME community in our common goals to raise accurate awareness and to advance biomedical research for effective treatments.
In June 2020, we are pleased to announce the international release of our documentary film on ME patients in Japan, now available with English subtitles on VIMEO.
Our Activities: Advocacy, Raising Awareness, and Stimulating Research
JMEA directly lobbies the Japanese National Diet (Parliament) and meets with elected Parliament members and Ministry of Health and local government 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 in 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 government adopted JMEA’s formal petitions to the Japanese Parliament requesting that disability assistance be made available to ME patients in 2014 and 2015. While the petition items 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 Parliament 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. Most recently, our 2019 petition requesting the government to take steps to designate ME/CFS as a designated Intractable Disease and to take steps to accelerate research was adopted in December 2019.
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 neglected and misunderstood as a “fatigue” illness with psychogenic factors, and where accurate information and recognition of the disease as a serious biomedical 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 their 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.
JMEA produced our own documentary film on severe ME patients in Japan, “Hope to Our 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 medical professionals and the public to better understand ME and the situation faced by ME patients in Japan. As above, the film is now available with English subtitles for an international audience.
We have also hosted screenings of Japanese-subtitled versions of the documentaries “Voices from the Shadows” and “I Remember Me,” appear in TV and online media, publish opinion letters in medical and sociology jounrnals, and convene 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. Due to our outreach efforts, new ME research is now being conducted at Japan’s National Institute of Neurology (NCNP).
We hope to continue to encourage dialogue between Japanese and international medical researchers and patient advocates to promote and advance ME research.