Information, Advocacy, and Hope for ME Patients
Based in Tokyo, Japan, Japan ME Association (JMEA) advocates for medical research, improved medical care, and access to social security services on behalf of ME patients in Japan. Founded as a patient association in 2010 and incorporated as a Japanese Specified Non-Profit Corporation in 2012, our members consist of ME patients, their family members, and other individuals who wish to improve the medical prognosis and quality of life of ME patients. Our work is supported by a talented team of medical researcher and clinician board member and advisors.
In 2008, JMEA President and ME patient Mieko Shinohara met four other ME patients for the first time since returning to Japan (after becoming ill while studying in the United States). The group decided to establish a patient association to raise awareness about ME in Japan.
With filmmaker Kim Snyder’s permission, Ms. Shinohara embarked on subtitling the documentary film I Remember Me, and Japanese filmmaker and board member Seiji Arihara completed a Japanese-subtitled version in late 2009. At the association’s first public awareness event, 90 people attended the first screening of the subtitled film in Tokyo. The following spring, we held a screening and panel discussion event at the House of Councillors Hall of the Japanese National Diet. These screenings were followed by many more across Japan.
We also convened our first patient gathering in Tokyo in September 2010. With many patients and their family members meeting other patients for the first time, the meeting provided an outlet for participants to share their experiences and exchange ideas.
Focus on Advocacy and Awareness
Starting in late 2010, JMEA began to focus on lobbying National Diet members and Ministry of Health officials, meeting with them directly to lobby for government action to address the medical and social security needs of ME patients in Japan. We met with then-Vice Minister of Health Osamu Fujimura on December 15, 2010. In response to our requests, the Ministry promised to establish a process by which disability certification determinations could be made for ME patients.
In 2011 and 2012, JMEA urged the Ministry through further request letters and meetings with Ministry officials to re-establish a Ministry of Health research group for ME/CFS.
We also broadened the scope of our public awareness activities by participating in speaking opportunities, holding press conferences, and submitting comments to professional journals. Ms. Shinohara’s comment criticizing the PACE trial was published in the correspondence section of the May 17, 2011 issue of The Lancet.
The Association publishes booklets with Japanese translations of key documents such as the 2003 Canadian Consensus Criteria and the 2011 ME International Consensus Criteria to serve as resources for Japanese ME patients, politicians, medical professionals, and the public about the latest overseas developments in ME.
On October 23, 2011, we hosted our first symposium featuring a screening of I Remember Me welcoming Ms. Snyder as our guest, followed by a panel discussion of ME researchers and clinicians. Nearly 180 people attended, we received messages of support from Diet members, and the event was covered in that evening’s NHK national news.
Incorporation as a Non-Profit Organization
On February 19, 2012, we held a joint Second General Meeting of the patient association CFS o tomo ni kangaeru kai (“Association to Consider CFS”) and an inaugural meeting of the Kintsusei nosekizuien no kai (“Myalgic Encephalomyelitis Association”). We unanimously approved a resolution to incorporate the association as a Japanese Specified Non-Profit Organisation.
On June 5, 2012, we became incorporated as the Japanese NPO Kintsusei nosekizuien no kai (English name Japan Myalgic Encephalomyelitis Association, or Japan ME Association).