Maki Ishikawa

Born in Aomori City, Aomori Prefecture, in 1971. In 2009, while working in Tokyo, she suddenly developed ME (myalgic encephalomyelitis)/ CFS (chronic fatigue syndrome), became practically bedridden, and returned home to Aomori. She began giving talks and carrying out activities to raise awareness of the disease in 2011. Since 2014, she has presided over the CFS Support Network, which is made up of patients, their families, medical and social work professionals, and supporters, and is expanding its activities nationwide.

In 2009, when I was working in Tokyo, I suddenly developed ME/ CFS at the age of 37, and was left in a practically bedridden state in the space of less than a month. Influenza-like symptoms such as a temperature of 37.5 – 38 degrees Celsius, chills, and joint pain persisted. Even though I took time off work and rested, my condition did not get any better, but rather continued to worsen. I was unable to perform basic tasks to take care of myself, let alone go to work, and my whole life was turned upside down.

ME/ CFS is an intractable disease with no known cause or established treatment. According to a 2014 survey by the Ministry of Health, Labour and Welfare, 71% of patients are unable to work, and 30% require care because they have difficulty in going out or are bedridden; but it is not a government-designated intractable disease. It is estimated that there are between 100,000 and 300,000 people with the disease (0.1% ~ 0.3% of the population), but the level of awareness of it as an illness is extremely low even among medical personnel, and it is not unusual for more than ten years to pass before a patient receives a diagnosis. According to US research data, as many as 91% of sufferers are believed to be undiagnosed or misdiagnosed, and I feel that the situation in Japan is probably similar.

Fortunately, the first hospital that I went to concluded that there was a high probability that I had ME/ CFS; but there is no medicine to cure this disease, only therapy to alleviate the symptoms. The only ten or so specialist outpatient clinics in the entire country are all stretched to breaking point, and I had to wait five months for an appointment.

I searched desperately for a way to live, all while lacking both physical strength and mental stamina; but everywhere I approached, including hospitals, medical advice agencies, city halls, pension offices, and so on told me “We’ve never heard of that disease; we can’t help you; it’s outside our remit”. All doors were closed to me. I was unable to access medical care or social welfare and had no place to go, like a refugee. This is not just my experience – everyone with this disease has been through the same thing. I held talks and so on in order to change this environment, but it was difficult to continue these activities when both my physical strength and mental functions were only at about 5% of what they had been before I became ill, and so it was hard for me to summon the resolve to form a group. With the encouragement of fellow patients from around the country, who told me that they wanted to work with me, and the collaboration of many people, the CFS (Chronic Fatigue Syndrome) Support Network was launched in 2014. It is exactly ten years this year since I started my activities on my own. I am grateful to have been able to expand the talks and activities to raise awareness of the disease across the whole country together with my companions. I felt that I had lost everything and been left behind by society, but I have met people whom I did not have the chance to get to know before my illness, and so I realise that my world has broadened. 

In April 2021, 10,000 copies of the “ME/ CFS medical treatment handbook”, which contains an explanation of the disease, a list of medical facilities, and an introduction of the public assistance system, were published and distributed free of charge to patients and relevant facilities such as advice and support centres for intractable diseases nationwide. I hope that this booklet is useful in advice and support work, enabling helping hands to reach even one patient more.

ME/ CFS worsens rapidly after even insignificant activities. It interferes not only with physical movement, but also with brainwork and intellectual tasks such as reading, writing, or watching films. The cognitive dysfunction, or brain fog, which characterizes ME/ CFS is attracting attention because it is also observed among the after-effects of COVID-19 (“long COVID”). The fact that between 10% and 60% of COVID-19 sufferers experience symptoms which fail to improve even after the acute phase of the disease has passed is emerging as a problem, named “long COVID”. Supposing that around 10% of long COVID patients go on to develop ME/ CFS, we can foresee a situation in the near future in which a response to over 80,000 ME/ CFS patients is needed, and so it can be thought that ME/ CFS research, education, treatment, and activities to raise societal awareness will become even more important from now on. I will continue to demand that the national government works to provide accurate information about the disease and enhance the medical system in order to ensure that patients are not left even further behind.