JMEA Meets Parliamentary Vice-Minister Fusae Ota

Ota meeting1JMEA held an in-person talks with Parliamentary Vice-Minister of Health, Labour and Welfare Fusae Ota at the Ministry offices on January 29, 2015. JMEA was represented by eight members, including three ME patients and one family member, each who braved the cold weather to attend.

Since this was JMEA’s first meeting with Vice-Minister Ota, we briefed Ms. Ota on the disease’s main characteristics as well as the serious situation of ME patients in Japan revealed by the Ministry’s 2014 patient survey.

We discussed last fall’s decision by NIH to move the leadership for ME/CFS research in the United States to the National Institute of Neurological Disorders and Stroke (NINDS), and the January signing of a Memorandum of Cooperation between NIH and the Japan Agency for Medical Research and Development (AMED), in which the agencies agreed to strengthen cooperative research efforts including in areas such as rare diseases and infectious disease treatments. JMEA requested that Japan take similar steps to advance research on ME as a neurological disease.

We told the Vice-Minister of the rising interest among Japanese neurologists to pursue serious research on the treatment of ME. As medical research on effective treatments is the government action that patients seek most, we requested that the Ministry support research on ME/CFS treatments. (We also mentioned the widespread effort by scientists and patients to challenge the PACE study and its conclusions.)

Our patient members also appealed to the Vice-Minister with specific comments about their personal experiences and desire for effective treatments as soon as possible:

“There are so few doctors who can even diagnose the disease that it took me years to receive a diagnosis. I would like research on treatment to proceed as soon as possible.”

“I have been mostly surviving on IV infusions five times a week for the last six to seven years. I would like treatment research to proceed while I am still living.”

“Most ME patients are forced to quit school and work. There are many patients who aren’t able to come to meetings like this are who are pressed by extreme financial hardship because they are unable to obtain any public disability assistance.”

The Vice-Minister shared that she had traveled to the U.S. to attend the signing ceremony for the NIH-AMED Memorandum of Cooperation. She also explained to us that while there have been shifts towards funding disability and welfare in the U.S., Japan remains a vertically-oriented, compartmentalized bureaucracy in which the moving around of government resources is not a simple matter.

At the same time, Ms. Ota understood the need for research on treatments, and commented that more “decisive politics” is being sought within government. She believed that learning the situation of ME patients from meetings like ours (from patients themselves) was the most effective, and that she would work diligently to understand the situation. She would convey the details of our meeting to the Health Minister.

JMEA Meets with Chairman of the House of Representatives’ Health, Labour and Welfare Committee

JMEA board members met with House of Representatives member Hiromichi Watanabe, chairman of the House of Representatives’ Health, Labour and Welfare Committee on February 12, 2016. We informed Mr. Watanabe about the October 2015 NIH announcements concerning ME/CFS research in the United States, new research being conducted in Japan in cooperation with the Association, and clinical drug trials being conducted overseas. We asked the Committee to recognize the need for research on ME treatments, for the government to support more ME research, and for ME to be studied as a neurological disease in Japan.

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.

Meeting with the Intractable Diseases Control Division

On December 9, 2015, we met with two assistant section chiefs of the Ministry of Health’s Intractable Diseases Division (the new name of the Specific Diseases Division effective October 1, 2015), where we submitted our most recent letter to Minister of Health Yasuhisa Shiozaki.

We reported on recent international ME/CFS developments, including on research papers from Stanford University and Columbia University, the U.S. National Institute of Health’s October 2015 announcements, and ME researchers’ and patients’ push to challenge the conclusions of the 2011 Lancet paper on the PACE study. We informed the Ministry of JMEA’s outreach efforts with The Japan Society of Neurology, such as our hosting of an ME information booth at the Society’s 2015 annual conference. In light of NIH’s announcement that ME research will be under the direction of the National Institute of Neurological Disorders and Stroke (NINDS), we requested that the health agency also advance ME research as a neurological disease in Japan.

Meeting the New Chief of the Intractable Diseases Control Division

On November 9, 2015, we introduced ourselves to Norikazu Matsubara, the new section chief of the Ministry of Health, Labour and Welfare’s Intractable Diseases Control Division. We reported on our previous discussions, discussed our most recent request letter to the Health Minister, and conveyed our wishes to continue our discussions with the Division under the new section chief.

Ministry Finalizes 2014 ME/CFS Patient Survey Report

The Ministry of Health, Labour and Welfare completed its review of the 2014 “Patient Survey Concerning the Activities of Daily Living Difficulty Levels of Chronic Fatigue Syndrome Patients” report. On September 30, 2015, the Ministry distributed the final report and a summary version of the report to regional Bureaus of Health and Welfare across Japan.

We encourage patients applying for Physical Disability Certificates, assistive devices, and home nursing care to direct your local government agencies to the Ministry of Health report. We hope the distribution of the report to the regional bureaus will help make the difficult process of obtaining disability benefits smoother.

The survey objective was “to use the survey to examine and analyse the actual state of patients’ daily living, medical, and welfare situations and to prepare resources that facilitate improvements to patients’ medical welfare.” The Performance Status (PS value) Scale was used to classify patients into three severity groups; (PS value 0-5 (mild disease), 6-7 (moderate disease), 8-9 (severe disease). These classifications were used to assess the level of impairment in patients’ activities of daily living.

Among patients in the survey, mild patients comprised 31.5%, moderate patients comprised 35.1%, and severe patients comprised 30.2% (n= 248 persons). Even though patients are only able to visit doctors on good days (with doctors unable to examine patients when their health is in bad condition), there was little difference between the patients’ self-reported average PS value of 6.0 and treating physicians’ average PS value of 5.6 (according to data from treating physicians that was collected for the survey). The International Association for CFS/ME has estimated that 25% of patients are severely ill patients. Through the use of oral questioning via phone calls and home visits to moderate and severe patients, the survey was able to encompass patients who are usually unable to visit hospitals.

The report observed: “The need for assistance in activities of daily living was indicated by findings that even among mild patients, 45% needed bed rest after performing housework, with more severe impairment among moderate and severe patients. As indicated in item 23 of the survey results, the survey revealed that moderate to severe patients are dependent on family assistance to conduct activities of daily living and that, along with severe patients, patients who live alone with no family support face a serious degree of difficulty with daily living. There is a need to swiftly establish assistance measures for patients of this disease.”

In evaluating the survey, the report states that “[i]t is difficult for medical facilities to evaluate severely ill patients of this disease due to their inability to travel to doctors, and surveys which encompass such severe patients have rarely been conducted globally. Due to the very limited time period in which the current survey was conducted, it is difficult to conclude that the period was sufficient to adequately publicize the survey. We can also infer that the survey was unable to fully capture the situation of ME/CFS patients due to logistics such as the need to gather data via phone calls and home visits, as well as having family members help elicit survey responses from patients unable to respond on their own.”


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):

    • Liberal Democratic Party of Japan: Kenya Akiba, Yoichiro Imaeda, Hiroshi Imazu, Ayuko Kato, Katsutoshi Kaneda, Megumi Kaneko, Yasushi Kaneko, Jiro Kawasaki, Yayoi Kimura, Shigeyuki Goto, Yutaka Komatsu, Hirotoshi Sasagawa, Hideyuki Tanaka, Hiroaki Tabata, Naomi Tokashiki, Hiroyuki Togashi, Mayuko Toyota, Takashi Nagao, Toshinao Nakagawa, Shinichi Nakatani, Hiroyuki Nakamura, Yuya Niwa, Seiko Noda, Hajime Funada, Tsuyoshi Hoshino, Noriko Horiuchi, Hiromi Mitsubayashi, Jun Matsumoto, Fumiaki Matsumoto, Masahisa Miyazaki, Eisuke Mori, Hideki Murai

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