petition – Japan ME Association

Japanese National Diet Adopts JMEA’s 2018 Petition for ME/CFS Research

We are pleased to announce that the Japanese National Diet has adopted Japan ME Association’s 2018 petition to the national government, “Petition Seeking Research Advancement for the Neurological Disease ME/CFS,” as a result of voting on the petition by the House of Representatives and the House of Councillors, respectively. The adoption of our most recent petition follows the successful adoption of our formal petitions to the Japanese national legislature in 2014 and 2015, and again in 2016.

The petition was introduced to the 2018 Diet session by 99 Diet members across multiple political parties and submitted with more than 13,500 signatures. We are deeply grateful to all of the individuals (which included not only patients but those who first learned about ME/CFS through the petition effort) and Diet members who generously contributed to this significant result.

The petition will now be delivered to the Cabinet, and the Cabinet will produce approximately two reports annually to the House of Representatives on progress on the petition items.

ME/CFS has been classified in the World Health Organization’s International Classification of Diseases as a neurological disorder since 1969, and the disease has again been classified as a neurological disorder in the revised ICD-11 announced on June 18, 2018. This past April, AMED (the Japan Agency for Medical Research and Development) adopted the neurologist Dr. Takashi Yamamura’s research team for ME/CFS. ME/CFS was also featured in the scientific publication Nature this year, indicating that the disease is now recognized at a global level.

Japan ME Association greatly appreciates your continued support as we advocate for ME/CFS to be designated as Intractable/Rare Disease in Japan and for research advancements that will bring much-needed effective treatments to ME/CFS patients.

The Japanese National Diet Adopts the Association’s 2016 Petition

We are very happy to report that both Houses of the Japanese National Diet adopted of Japan ME Association’s 2016 petition during this year’s extraordinary Diet session. With our last petition adopted by the House of Councillors in 2014 and by the House of Representatives in 2015, success on our petitions at the legislature for the third year in a row is a truly remarkable achievement. Our petition was the only one adopted by the House of Councillors’ Health, Labour and Welfare Committee during this Diet session and just one of two adopted by the House of Representatives.

Thanks to the hard work of many, 105 bipartisan Diet members across seven political parties and two independent Diet members agreed to introduce the petition, and we gathered nearly 14,000 signatures. The signatories included not only patients and their families, but people who learned about ME for the first time through the petition who wished to help improve the situation of patients. We express our heartfelt gratitude to everyone. The petition will be delivered to the Cabinet, and the Cabinet will issue updates on the petition items to the House of Representatives approximately twice annually.

We believe that our October international academic symposium (supported by the Ministry of Health and Japan Medical Association, sponsored by the Nippon Foundation, and where the President of the Japan Neurology Association gave remarks) had a positive impact on the petition’s adoption. We continue to hope for advances in research for ME by specialist researchers, the establishing of a national medical system where ME patients may receive medical treatment, and for research into effective treatments for the disease similar to that which is being conducted abroad. We thank you in advance for your continued support towards these important goals.

Cabinet Report on JMEA’s 2015 Petition

Following the national government’s adoption of JMEA’s petition for public assistance for ME last fall, we will be receiving reports from the Cabinet on our petition items approximately twice annually.

We received the first such report from the Cabinet with the subject line “Petition Concerning Assistance for Myalgic Encephalomyelitis,” with the Ministry of Health, Labour, and Welfare designated as the main responsible ministry. The report contained updates on our two petition items (for the establishing of diagnostic criteria and for inclusion in the Act on General Support for Persons with Disabilities) as follows:

(1) A research team commissioned by the Japan Medical Research and Development Agency is conducting research on discovering the cause of the disease and developing diagnostic criteria and treatments.

(2) The existence of objective diagnostic criteria for a disease is a prerequisite for the disease to be eligible to receive support such as disability welfare services under the Act on General Support for Persons with Disabilities. We are about to initiate a review of eligible diseases, building on our ongoing review of diseases designated as Intractable Diseases under the Intractable Diseases law. In the event diagnostic criteria containing objective markers for ME/CFS is established, we would like to consider the inclusion of ME/CFS as a disease eligible to receive disability welfare services under the Act, including from the perspective of the actual need for public assistance.

The House of Representatives Adopts the Association’s Formal Petition

In the 2014 National Diet session, Japan ME Association’s petition regarding public assistance for ME/CFS patients was adopted by the House of Councillors. This year, we re-submitted the petition for adoption by the House of Representatives. On September 25, 2015, the House of Representatives’ Committee on Health, Labour, and Welfare unanimously approved the petition and announced its adoption at the House of Representatives’ plenary session. The Association’s petition was one of only two adopted among the 62 petitions submitted to the Committee in 2015.

71 Diet members across party lines agreed to introduce the petition, which we submitted with nearly 35,000 signatures, to the Diet. Signatories were not limited to ME patients and their family members, but individuals who learned about the disease for the first time and expressed their wishes for even incremental improvements to the current situation facing ME patients. The adopted petition will be delivered to the Cabinet. Thereafter, the Cabinet will inform the House of Representatives about progress made on the petition items approximately twice a year.

The Association would like to thank every individual who signed and helped us gather signatures for the petition. We would also like to thank all ME patients who participated in the 2014 Ministry of Health, Labour and Welfare’s ME/CFS patient survey. That survey revealed that 30.2% of patients in Japan are severe patients who are bedridden or nearly bedridden. The serious situation brought to light by the survey results and the widespread media coverage of its findings allowed us to persuade the government about the urgent need for welfare services for disabled patients.

We are encouraged by the adoption of our petition by the Diet. We hope that it will contribute to increased awareness about the disease and that the ME patients may be better understood by others.

We strongly desire that ME/CFS will be a covered disease under the Act on General Support for Persons with Disabilities. We will be steadfast in our efforts towards this goal until it is achieved.

List of the 71 Diet members who supported the petition (listed by party as of the date of petition submission):

Democratic Party of Japan: Tomoko Abe, Satoshi Arai, Kenta Izumi, Kensuke Onishi, Mitsunori Okamoto, Yasuko Komiyama, Kaname Tajima, Keisuke Tsumura, Katsuhito Nakajima, Akira Nagatsuma, Yasuhiro Nakane, Chinami Nishimura, Akio Fukuda, Kazunori Yamai

Komeito: Shinichi Isa, Hisashi Inatsu, Keiichi Koshimizu, Shigeki Sato, Hideo Tsunoda, Michiyo Takagi, Shigeyuki Tomita, Noriko Furuya

Ishin: Yasushi Adachi, Nobuhiko Isaka, Yosei Ide, Yasuo Urano, Mito Kakisawa, Akihito Hatsushika, Kazuhiro Shigetoku, Toshihide Muraoka

Japan Communist Party: Seiken Akamine, Chizuko Takahashi, Terufumi Horiuchi

Social Democratic Party: Kantoku Teruya

The People’s Life Party: Denny Tamaki

Unaffiliated: Toshinobu Nakasato

Delivery of Petition to the Diet

On June 9th, JMEA delivered our petition for public assistance for ME patients with nearly 35,000 signatures to the 71 Diet members from both houses of the Japanese Diet who agreed to introduce the petition during this year’s extended Diet term. Deliberations on the petition are planned for end of the term. Some Diet members were in their offices when we arrived to deliver the signatures, and we were able to hand the petition to those members directly.

We gathered the signatures thanks to the combined efforts of many individuals since July 2014. The signatures were collected not only by ME patients and their families, but by many people who learned about ME for the first time and who wished to help bring about improvement in ME patients’ lives. We are deeply grateful to each individual who contributed to the petition.

The 2014 Ministry of Health ME/CFS patient survey exposed the serious situation of ME patients in Japan. Having come close last year with the petition being adopted by the House of Councillors’ in 2014, we will strength our efforts to realize the adoption of the petition by the House of Representatives in 2015.