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.”