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.

JMEA Meets with Secretary to Special Advisor Seichi Eto

On February 8, 2016, JMEA held an hour-long meeting with the Secretary to House of Councillors member Seichi Eto, special advisor to the Prime Minister and head of the Investigative Committee for Disabled Children.

We requested Mr. Eto’s support for government funding of research on ME as a neurological disease. We discussed NIH’s ME/CFS study under the direction of NINDS, mounting global opposition to the 2011 Lancet PACE study, ongoing clinical drug trials for the treatment of ME in other countries, and new research being started in Japan in cooperation with the Association. We further urged that the “Chronic Fatigue Syndrome” disease name to be changed in Japan, explaining that that name has perpetuated the erroneous view that the disease is merely an illness of chronic fatigue.

We informed Mr. Eto’s Secretary about our meetings with the Minister of Health and the president of Japan Medical Association with our requests for increased ME research.

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.

Ministry of Health Publishes Patient Survey Report on Website

We reported earlier that the Ministry of Health distributed its final report (as well as a summary version) on its 2014 “Patient Survey Concerning the Activities of Daily Living Difficulty Levels of Chronic Fatigue Syndrome Patients” to regional Bureaus of Health and Welfare on September 30, 2015.

The reports had been sent as a liaison office communication from the Ministry’s Health Service Bureau Specific Diseases Control Division and the Social Welfare Bureau Disability Welfare Policy Planning Division to the regional bureaus. The communication from the Ministry stated: “[t]his report is being distributed to assist in administration matters such as responding to requests for advice from CFS patients and patients with similar symptoms and in making disability certification determinations. Please provide the information to the physicians designated to issue disability certifications within your jurisdictional district.”

The report and summary report have now been published on the “Intractable Disease, Rheumatoid Arthritis, Allergy, Kidney Disease, Chronic Pain-Related Information” page of the Ministry of Health, Labour and Welfare website under the following title: “Report on Patient Survey Concerning the Activities of Daily Living Difficulty Levels of Chronic Fatigue Syndrome Patients.”

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

Meeting with the Japan Medical Association

On September 16, 2015, JMEA board members met with Dr. Yoshitake Yokokura, President of Japan Medical Association, at the Japan Medical Association Hall in Tokyo. Former JMEA Vice President Miwako Hosoda introduced us to Dr. Yokokura and attended the meeting with us.

JMEA requested Dr. Yokokura’s support to spread accurate information about ME/CFS among Japan Medical Association members, citing the seriousness of the disease and the large number of severely ill patients in Japan. We provided an information package about ME to him which included recent research papers from Japan and overseas showing ME/CFS to be a serious organic disease, the 2014 Ministry of Health Patient Survey report, our six informational leaflets, and a DVD of the documentary film Voices from the Shadows. When we raised the benefits observed in Waon therapy in relieving ME/CFS symptoms, Dr. Yokokura was already aware that the therapy is used to treat severe heart disease patients.

We discussed JMEA’s participation in the Japan Federation of Bar Associations’ July seminar concerning diseases mired in the “gap in the system” of Japanese disability law. When we brought up our pending petition to the Japanese Diet regarding public assistance for ME patients, Dr. Yokokura mentioned that there were 21 Japan Medical Association members who were Diet members and that they may be able to support our petition. He carefully listened to our discussion points and encouraged us in our continued efforts on behalf of patients.

We were very grateful to Dr. Yokokura for meeting with us. We hope more Japanese doctors will become educated about ME and available to see ME patients in their practices.

Negotiations with the Ministry of Health

On December 9, we met with two assistant section chiefs of the Ministry of Health, Labour and Welfare’s Intractable Diseases Division (the Specific Diseases Division was re-named effective October 1, 2015), where we submitted our most recent request letter to Minister 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 the effort by ME researchers and patients worldwide seeking to challenge the 2011 Lancet paper on the PACE trial. We informed the Ministry of the Association’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 would now be led by the National Institute of Neurological Disorders and Stroke (NINDS), we requested the Ministry to also research ME/CFS as a neurological disease here in Japan.