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.

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