Japanese legislators rely on the Japanese Ministry of Health for accurate and up-to-date information on diseases, including for ME/CFS. For this reason, the Association was deeply concerned to discover on February 7, 2019 the informational materials on ME/CFS that the Ministry currently distributes to members of the Japanese legislature who wish to learn about the disease.
Presented in a fact-sheet format, the information (translated below) contains inaccuracies which combine to depict ME/CFS as a mild fatigue syndrome with psychological components. The Ministry’s distribution of this misleading information to Japan’s policymakers directly affects the situation faced by ME/CFS patients in Japan, where medical professionals still do not recognize ME as a disabling physiological disease and where patients lack access to the medical care and disability assistance they need.
The summary is misleading in what it includes and what it excludes. ME/CFS is described in a list of symptoms that any healthy person might have: chronic malaise, fatigue, headaches, and cognitive dysfunction. The list notably includes depression, which is not a symptom of ME/CFS, while it excludes PEM (post-exertional malaise), the worsening of physical and cognitive impairments following exertion, a hallmark symptom of the illness.
The information makes no mention of the nature and severity of patients’ physical disability that was revealed by the Health Ministry’s own 2014 ME/CFS Patient Survey. That survey found that 30% of patients are severely ill patients who are bedridden or close.
The information is also misleading in its listing of psychiatric conditions as comorbidities without providing any other context. Taken together with the mention of antidepressants and psychological therapy as existing treatments, we believe anyone relying on this summary alone to learn about ME/CFS would conclude that ME/CFS is a) a mild illness b) which has a psychiatric or psychosomatic component. It is not explained that patients may experience secondary depression as a reaction to the financial burdens and social isolation that come with the loss of their careers and active family and societal roles on top of suffering from a chronic disabling physiological disease.
The information omits the fact that the illness has been classified as a neurological disorder by the WHO in its International Classification of Diseases since 1969.
The following is an English translation of the information:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(1) What is ME/CFS:
A syndrome where patients are affected by severe generalized malaise of unknown cause followed by strong fatigue along with symptoms such as mild fever, headache, muscle pain, a sense of exhaustion, cognitive dysfunction, and depression which continue over a long period. Comorbid symptoms include mood disorders, somatic symptom disorders, anxiety disorders, fibromyalgia, and irritable bowel syndrome.
Chronic fatigue syndrome is a syndrome that was reported by the United States Centers for Disease Control in 1988 (Chronic Fatigue Syndrome: CFS). In the United Kingdom it was also called myalgic encephalomyelitis (Myalgic Encephalomyelitis: ME) but in recent years it is being said that these might be the same syndrome.
The involvement of infectious disease, immune function abnormalities, autonomic nervous system abnormalities, and endocrine abnormalities have been suggested but the cause is unknown.
(3) Diagnostic criteria / Treatment
At present no diagnostic criteria which uses objective markers has been created in any country. Vitamins, antidepressants, Chinese herbal medicine, and psychological therapy are being tried, but no effective treatment methods have been established.