The following petition was adopted by the House of Councillors of the National Diet of Japan on June 20, 2014, and by the House of Representatives on September 25, 2015.
Petition Concerning Public Assistance for Myalgic Encephalomyelitis Patients
I. Petition Background
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease in which, along with severe fatigue which suddenly and significantly impairs activities of daily living, patients suffer from symptoms affecting the entire body over a long period of time. Symptoms include headache, mild fever, myalgia, and weakness, as well as neuro-cognitive dysfunction such as cognitive processing and concentration deficits. The disease impairs patients’ ability to work and participate in society. It is commonly known in Western countries that the disease’s pathology features functional abnormalities of the central nervous system and autonomic dysfunction. Disease onset often follows a viral infection. Disease onset is not triggered by a worsening of normal chronic fatigue. The disease concept is well established. The World Health Organization’s International Classification of Diseases (ICD) classifies the disease as a neurological disorder and internationally recognized diagnostic criteria exist. The number of ME/CFS patients in Japan is estimated to be between 240,000 to 300,000 patients.
The cause is not yet known and there are no effective treatments. Due to the lack of specialist physicians, many patients are unable to obtain a diagnosis. The severity of the disease is also misunderstood due to the disease name “chronic fatigue syndrome,” which has perpetuated prejudices against patients.
Many ME/CFS patients are unable to work due to the disease. Many are severely ill patients who are bedridden or nearly bedridden. The International Association of CFS/ME has stated that severely ill patients who are nearly bedridden and rarely able to leave their homes comprise approximately 25% of ME/CFS patients. Despite disease severity, it is extremely rare for an ME/CFS patient to be approved for a Physical Disability Certificate. There is little to no government disability assistance available to patients.
Under the amended Basic Act of Persons with Disabilities promulgated in 2011, functional disabilities from chronic diseases were to be included within the scope of the law as “other physical and mental disabilities.” Because ME/CFS was excluded from diseases covered by the Act for Comprehensive Welfare of Persons with Disabilities that went into effect in April 2013, however, ME/CFS patients are currently situated in a chasm in the system. While patients continue to face both financial hardship and serious impairment in their ability to conduct activities of daily living, they remain unable to access to public disability assistance.
In 2014, the government conducted a national ME/CFS patient survey and the urgent situation of ME/CFS patients has begun to come to light. Seeking to relieve the daily suffering of patients and for medical research that will lead to real quality of life improvements, and with the hope that patients with severe illness may have access necessary disability assistance, we request that the characteristics of the disease be considered to the fullest extent possible and petition for the following items.
II. Petition Items
1. Establishment of objective diagnostic criteria.
Please conduct research validating internationally recognised diagnostic criteria for ME/CFS and establish a diagnostic criteria for ME/CFS in Japan that include objective disease markers as soon as possible.
2. Access to disability support and services for ME/CFS patients in future reviews of diseases covered by the Act for Comprehensive Welfare of Persons with Disabilities.
In future deliberations of diseases covered by the Act for Comprehensive Welfare of Persons with Disabilities, please consider the actual degree of need for support and services of a patient population as a distinct factor for inclusion in the Act, that is, separate from the degree of need for medical expense assistance and from the degree of need for medical treatment research.
Once the diagnostic criteria for ME/CFS with objective disease indicators is established, please promptly review the diseases covered by theAct for Comprehensive Welfare of Persons with Disabilities and make government disability support and services available to ME/CFS patients whose daily living activities are significantly impaired and who require assistance with living and work activities.