Category: Awareness

Fundraising for Documentary Film on ME in Japan

Over the past two years, filmmaker and JMEA board member Seiji Arihara has been filming ME patients in Japan, depicting the daily reality of patients for a documentary film on ME in Japan, scheduled for completion in the spring of 2017.

We are currently raising funds to cover production costs for the film, and have created a short promotion video here. We ask for your help to circulate the video and encourage others to donate what they can so that we can make the best documentary possible.

The film will convey the difficult medical, financial, and social situation faced by ME patients and the complex problems surrounding ME, including the current “chasm in the (government) system” in which ME patients do not have access to public disability support and services under the current disability law. We would also like to portray the steadfast efforts of patient advocates and dedicated researchers and clinicians to improve the current situation despite these systemic problems.

Most of all, our goal is to raise accurate awareness about ME to improve the current state of medical care and to encourage new research for the disease.

ME remains virtually unknown in Japan, even with the Ministry of Health’s report from the 2014 ME/CFS patient survey revealing that 30% of patients are bedridden or close, most without access to reliable medical care. Patients and their loved ones continue to suffer from a lack of understanding about the severity of the illness from the medical profession, government health agencies, and society.

We kindly ask for your contribution to make the best film possible.

Donations can be made by bank transfer (within Japan) to the following accounts, created especially for the documentary film.

For donations from Japan Post Bank accounts:
– Japan Post Bank
Code: 10040 Number: 9222542

For donations from all other Japanese banks:
– Japan Post Bank
Branch Name: 008 Branch Number: 008
Regular Account: 9222542
Tokutei hieirikatsudohojin kintsusei nousekizuien no kai

 

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.

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.”

Presentation of 2014 Patient Survey Results at the Diet

Japan ME Association and the St. Marianna University School of Medicine held a joint presentation and press conference on the results of the Ministry of Health, Labour and Welfare’s 2014 “Patient Survey Concerning Activities of Daily Living Difficulty Levels of Chronic Fatigue Syndrome Patients” at the House of Representatives Hall on April 22nd, 2015. Lead survey investigator Dr. Kazuo Yudo of St. Marianna University School of Medicine presented the survey results, with JMEA board member Dr. Isu Shin moderating the discussion.

The survey revealed that 30.2% of ME patients in Japan are severely ill patients who are either “bedridden with need for constant assistance” or “bedridden more than half of the day with need for frequent assistance.” This finding of the percentage of severely ill ME patients in Japan was consistent with the 25% percentage of severely ill ME patients cited by the International Association for CFS/ME (IACFS/ME).

So-called moderate ME patients comprised a further 35.1% of patients. These patients are mostly housebound, and are “able to conduct self-care but are unable to participate in regular social life or perform light labor,” or “are able to perform light labor on good days but require rest at home for more than 50% of the week.” Accordingly, the survey revealed for the first time in Japan that more than 65% of ME patients in Japan face a serious degree of impairment in conducting activities of daily living.

JMEA President Mieko Shinohara emphasized that the aspect of ME that patients cited as being the most difficult was physical suffering from disease symptoms. She appealed to the Diet members in attendance to adopt the Association’s petition in this year’s Diet session, following its adoption last year by the House of Councillors, but not by the House of Representatives.

Among the many notable comments raised in the ensuing discussion included: “There seem to be more patients who report not being able to work compared to other diseases,” “It is extremely difficult for patients to obtain Physical Disability Certificates,” “Any observations concerning the large number of young people and women among patients?” and “Does the uneven regional distribution of study patients reflect the lack of specialist physicians?” Questions from the media included: “How do the study results compare to studies from overseas?,” “Are there specific infections that trigger the disease?”

The survey team responded that the survey included patients who were unable to leave their homes for regular doctor visits; that there is no government or scientific organization in Japan that recognizes physicians as ME specialists; and that there is a need to re-examine the diagnostic criteria used in Japan.

More than 120 people attended the event, including 15 Diet members and 24 secretaries to Diet members across five parties. Officials from government agencies also attended, including from the Ministry of Health’s Specific Disease Control Division, the Department of Health and Welfare for Persons with Disabilities, and the Pension Bureau, as well as from the Ministry of Education’s Special Needs Education Division of the Elementary and Secondary Education Bureau.

The survey findings were covered in the 9pm NHK national news the same evening. Articles about the survey findings appeared in national newspapers such as Asahi and Mainichi news. Kyodo news, regional media outlets, and specialty publications also covered the event.