The following is a translation of the 2018 formal petition that JMEA submitted to the Japanese National Diet. The petition was adopted by both Houses of the National Diet during its 2018 session.
Petition Seeking Research Advancement for the Neurological Disease Myalgic Encephalomyelitis
To the Chairman of the House of Representatives
To the Chairman of the House of Councillors
The National Diet of Japan
1. Petition Summary
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is categorized as a neurological disorder by the World Health Organization’s (WHO) International Classification of Diseases (ICD-10 93.3). The United States National Institutes of Health (NIH) on its website has described ME/CFS as “an acquired chronic disease characterized by significant relapse after exertion” of any sort, that “this disease includes immune, neurological and cognitive impairment, sleep abnormalities, and autonomic dysfunction resulting in significant functional impairment accompanied by a pathological level of fatigue” with joint and muscle pain, sore throat, tender lymph nodes, and headache, and that “at least 1 in 4 of individuals with ME/CFS are bedbound or housebound at some point in the illness and most never regain their pre-disease level of functioning.” An NIH study is underway based on the hypothesis that ME/CFS is triggered by a viral infection that results in immune-mediated brain dysfunction with the eventual goal of identifying effective treatments. As a rationale, two Norwegian studies published in the medical journal Plos One were cited, in which lymphoma patients with ME/CFS were treated with rituximab and the drug was also found to be effective for ME/CFS symptoms.
Despite findings from the Ministry of Health, Labour and Welfare’s 2014 patient survey which showed that 30% of patients in Japan are severely ill patients who are bedridden or close, ME/CFS has not been designated by the national government as an Intractable/Rare Disease. The ME/CFS patient population has previously been believed to be 360,000, thus failing to meet the rarity requirement (patients numbering fewer than 0.1% of the general population). The basis for the 360,000 estimate, however, was the 1999 study “Fatigue Patient Survey and Research of Fatigue Recovery Methods,” which found that 0.3% of the population experienced severe chronic fatigue. It is inappropriate to rely on a fatigue survey as the sole basis to estimate the number of patients with ME/CFS, which is not a disease of fatigue. By contrast, Japan Agency for Medical Research and Development’s (AMED) website, renewed in October 2016, showed the number of patients who met 2012 revised clinical diagnostic criteria for CFS to be 0.1% of the population. For the reason that AMED’S most recent epidemiology survey found ME/CFS patients to be 0.1% of the population, we strongly hope that research on ME/CFS will be advanced as a designated Rare Disease. （http://www.fuksi-kagk-u.ac.jp/guide/efforts/research/kuratsune/）
Knowledge about ME/CFS remains extremely low even among medical professionals, and patients continue to suffer from misunderstanding and prejudice. In Western countries, medical scientists are already competitively working to identify and develop effective treatments. We petition for the following items in the strong hope that accurate knowledge about ME/CFS will be widely realized, and that medical research will be advanced that will lead to actual improvements to the quality of life of ME/CFS patients.
2. Petition Items
1. Government-led ME/CFS public awareness activities. Please conduct government-led public awareness activities to spread accurate knowledge about the neurological disease ME/CFS.
2. Advancement of research on ME/CFS as a Rare Disease. On the basis of AMED’s most recent epidemiological survey, please advance research for ME/CFS as a Rare Disease.