About Myalgic Encephalomyelitis (ME)
ME is classified as a neurological illness since 1969 by the World Health Organisation (WHO)- ICD G93.3
Worldwide there are millions missing from their previous active lives having acquired Myalgic Encephalomyelitis (ME).
ME occurs in all ethnic and racial groups and in most countries around the world; it affects people of all income levels and occurs in adults and children.
The globally reported ME prevalence ranges between 0.2% and 2.8% . A recent systematic review conducted by Estevez-Lopez (2020) showed that ME prevalence ranged between 0.1% and 2.2% in Europe. *
The overall burden of the disease is very high (main/accessory symptoms, co-morbidities, socio-economic implications), demonstrating the urgent need for improvement of overall knowledge and acceptance of the disease in healthcare, social care and society as a whole. Inter-disciplinary approaches to improve early diagnosis and long-term care for patients, further research and clinical applications will be mandatory to ensure proper care of ME patients worldwide.
About JMEA, the Japan ME Association
We would like to put a spotlight on the situation re ME in Japan which is no different to the situation in Ireland and elsewhere, and acknowledge the wonderful work done by The Japan ME Association (JMEA), which includes the provision of global news in Japanese to ME patients in Japan; ME awareness raising via website; the making and production of an educational film about Japanese ME patients; education among the public and the Japanese National Parliament; commisioning of a national ME patient survey; and opposition to the proposed publication of inappropriate “Treatment Guidelines for ME/CFS for Japan (Draft)” - their Activities: Advocacy, Raising Awareness, and Stimulating Research.
The current population of Japan is 125,358,429 so given the globally reported ME prevalence ranges between 0.2% and 2.8% there's an estimated 100s of thousands to a few million living with ME in Japan i.e., 250,716 - 3,510,036.
A 2014 ME Patient Survey Report following a survey by the Ministry of Health, Labour and Welfare concerning the daily living difficulty levels of ME patients in Japan revealed the harsh reality of ME Patients.
The Japan ME Association (JMEA) is a non-profit organization based in Tokyo, Japan. They work on behalf of people with Myalgic Encephalomyelitis (ME) 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.
JMEA's 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. JMEA publish the latest global ME news in Japanese on their website as well as in materials that they distribute to the public.
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.
JMEA 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.
JMEA's advocacy extends to the broad spectrum of public medicine and policy matters that affect ME patients in Japan. At the end of 2017, they 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.
In 2014 JMEA began filming “Hope to These Hands: The Reality of ME/CFS”. They completed the film and had their first preview screening at the TKP Shinagawa Conference Center in Shinagawa, Tokyo in October 2017. With JMEA board member Dr. Isu Shin, M.D., Ph.D., moderating, JMEA President Mieko Shinohara thanked Director Seiji Arihara for making the film and expressed that the objective of making and screening the film before audiences in Japan was to raise accurate awareness about ME and to advance research for the disease.
The film began screening in 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.
The film depicts patients who are severely ill with ME amidst a society that does not recognize the illness, the social and financial consequences of patients’ inability to obtain Disability Certificates, their patient association, and finally, the hope from recent research developments in the US and other countries to develop effective treatments.
JMEA's film 'Hope to Our Hands: The Hidden Story of ME/CFS in Japan' is now available with English subtitles for an international audience. In June 2020, JMEA announced the international release of their documentary film on ME patients in Japan, now available with English subtitles on VIMEO. The film was 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) brought the film to an international audience for the first time.
Link to film: “Hope to Our Hands: The Hidden Story of ME/CFS in Japan,”
- More about the ME Asssociation in Japan: English language: https://mecfsjapan.com/
* Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland, 2023
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