Japanese legislators rely on the Japanese Ministry of Health for accurate and current information on diseases. For this reason, our Association was deeply concerned when we discovered (on February 7, 2019) the fact sheet on ME/CFS that the Ministry of Health currently distributes to Japanese legislators who request information from the Ministry to learn about the disease.
Presented in a one-page fact sheet, the information (translated below) contains careless inaccuracies which combine to depict ME/CFS as a mild condition with psychiatric components. It is careless and misleading in what it includes and what it excludes: ME/CFS is summarized as 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 the disease, while it excludes the hallmark ME symptom of post-exertional malaise—the prolonged worsening of physical and cognitive function following physical or cognitive exertion.
Further, the fact sheet prominently lists several psychiatric conditions as “co-morbid symptoms” in the second sentence of the short document. We are concerned that taken together with the mention of antidepressants and psychological therapy in the treatment section of the document, any individual relying on this fact sheet alone would conclude that ME/CFS is a mild condition with psychiatric components, misrepresenting both the medical literature about the nature and severity of the illness and reflecting a denial and disregard for the lived reality of ME patients.
The fact sheet surprisingly makes no mention of the Health Ministry’s own 2014 ME/CFS Patient Survey, which found that approximately 30% of ME patients in Japan are severe patients who are bedridden or close and require assistance with activities of daily living and that moderate and severe ME/CFS patients are unable to work.
The fact sheet also conveys the incorrect impression that the illness was first reported in 1988, omitting information about earlier reports which led to its classification in 1969 as a neurological disorder in the WHO International Classification of Diseases.
The following is an English translation of the fact sheet in its entirety:
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 feeling 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.