disability – Japan ME Association

JMEA President Authors Foreword in JD Journal

Japan ME Association president Mieko Shinohara authored the Foreword to the February 2016 issue of the Japan Council on Disability’s (JD) monthly journal, Subete no hito no shakai. Ms. Shinohara is on the board of JD; board members of JD and the Japan Disability Forum (JDF) take turns supervising the journal’s Foreword section.

The Ministry of Health, Labour and Welfare’s 2014 patient survey revealed that 30% of ME/CFS patients are severe patients who are bedridden or nearly bedridden. Notwithstanding the severity of the disease, patients have long suffered from being treated as malingerers. A study published in 2011 in the medical journal The Lancet further spread the erroneous notion that ME/CFS could be overcome by simply changing one’s beliefs by concluding that Cognitive Behavioral Therapy and Graded Exercise Therapy were effective to treat ME/CFS.

In October 2015, an article regarding significant flaws in the study was posted on a Columbia University medical blog. These included: changing the protocol for assessing the study data during the study, selection of study participants using diagnostic criteria that encompasses persons who do not have ME, and conflicts of interest created by the main study investigators’ financial and consulting relationships with disability insurance companies. As a result, British and American researchers and patient advocacy groups are seeking corrective action, including a re-analysis of the study data and a retraction of the study.

Amidst the controversy, the U.S. National Institute of Health (NIH) announced in late October 2015 that it would advance ME/CFS research and that the National Institute of Neurological Disorders and Stroke (NINDS) would lead ME/CFS research within NIH. Moving research on ME (long classified as a neurological disorder under the World Health Organization) under the leadership of the United States government’s national neurological institute was a ground-breaking development. Japan should also advance research on ME/CFS as a neurological disease. The reason is straightforward: a neurological disease cannot possibly be cured by changing one’s personal beliefs.

It is likely that the Lancet study will eventually be retracted, and that the disease name will also change as research progresses and the pathology of the disease becomes better understood. Japanese neurologists have recently started serious research on ME. No matter how severe their disease, ME patients strongly desire to return to their careers and contribute to society. The Act on the Elimination of Discrimination against Persons with Disabilities will come into effect in April. We will also continue to work to break through one barrier after another towards equal participation in society.

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.