It was 21 years ago when I suddenly got this never-ending illness. Since then, I have been trying to make it through each day, suffering from a great deal of pain and discomfort. And I was finally diagnosed with Chronic Fatigue Syndrome (CFS) just the other day. 

At long last, I got to see a great doctor and have started receiving treatment. 

What is Chronic Fatigue Syndrome?

Many of you may have thought, "What's chronic fatigue syndrome?"

Chronic Fatigue Syndrome (CFS) is a chronic illness that is thought to be triggered by a flu-infection or a cold. A patient with CFS suffers various long-lasting symptoms that include severe fatigue, headache, constant mild fever, muscle pain, sleep disorder, depression, impaired memory and mental concentration.

Now, you might have thought, "Oh, you just feel fatigued all the time. I feel fatigued sometimes, too!", but that's not the case for CFS.

Although symptoms and their intensity vary person to person, some patients with CFS are even bedridden, not to mention they are unable to work.

Fatigue that CFS patients have is extreme and constant, and sleep doesn't relieve it as it does for healthy people. Therefore, some people started to call it Myalgic Encephalomyelitis (ME) in recent years, in order not to confuse it with chronic fatigue.    

In my case, I have extreme fatigue, often feel horribly sick, severe headaches, stomachache, nausea, dizziness, catch colds easily, get tired easily, sweat a lot (regardless of temperature), malfunctioning thermoregulation(extremely sensitive to temperature changes), sleep disorder and so on

Extreme fatigue doesn't really sound daunting, but it's truly horrible. I had never felt this kind of fatigue before I came down with this syndrome. For example, in the morning, you wake up to feeling fatigued like you have just climbed up Mt. Everest without a sufficient oxygen supply (I haven't actually climbed the mountain, though).  

You also feel sick as though you have the flu and have just run 100 meters at your fullest. It's so severe that you feel sick all over your body. I have never really been able to find words to describe how rough it is.

Besides, you have more than one symptom 24/7. NEVER have I spent a day without pain or fatigue over the past 21 years.
CFSPatientImage160414Photo by Pinoko

What causes this sickness?

The cause of CFS is still unknown, but many experts now believe it is triggered by genetic mutations combined with exposure to certain viruses or toxins.

I used to be a healthy kid that didn't catch a cold even after walking around in flip-flops on snowy days.

That is until right before my tenth birthday (January 1995) when this chronic sickness came into my life. I got the flu and my temperature rose up to nearly 40℃(=104F). It came down in a few days, but a mild fever (slightly above 37℃=98.6F) lingered for the next two weeks.

From then on, I started to feel extremely tired as if I finished a full marathon on a high mountain even in the morning with a good night's sleep, and my temperature would shoot up above 38℃(=100.4F) when I came home from school as usual, and it started repeating.  

I was also constantly dizzy, got splitting headaches, and always felt sick. I had lost all my strength by the time I graduated from elementary school.

I became so weak and caught colds so easily, that I was lucky if I had one day a month where I didn't have a stomachache, headache, or sore throat. And I also had a mild fever that lasted throughout junior high school (1997-2000). 

I added insomnia to my list of symptoms after I turned twenty (2005), and which made it even harder for me to recover from fatigue.

Even now, when I'm feeling particularly sick, I have to spend most of my time in bed (and that usually lasts two weeks to two months).


As I briefly mentioned earlier, few doctors can diagnose this illness in Japan. And there's no specific test for this syndrome, so your test results will only give most doctors the conclusion that you're just "faking it," no matter how many tests you have done such as CT, MRI, brainwaves and blood test.

I, myself, have been told a million times that it was all in my mind. I have been to the pediatrician, physician, neurologist and psychiatrist, and taken various tests only to be disappointed at the results.

Finding a trustworthy doctor is definitely one of the most daunting and stressful tasks that most patients with chronic illnesses face.

How I got to meet my doctor:

As I was getting used to working as an online English tutor, I started to want to work and teach English more at the end of last year. So I knew I had to bid farewell to the days of pushing myself too hard and collapsing from exhaustion. 

First, I started searching online for a doctor specializing in chronic illnesses here in Ibaraki. I found one and went to see him, but he told me that he was not a CFS specialist, but I didn't give up.

I continued searching and found sites called ME/CFS-info and 名医を探すドクターズガイド or Brilliant Doctors Guide. 

On these sites, someone called Dr. Takeo Madarame looked nice to me, and I paid a visit to his clinic's website. It was there that I read his blog and I thought I could trust him before I decided to go see him. My first appointment was in September of last year, and I received two more treatments afterward.

CFS is an invisible illness, and patients usually look healthy.

If you get such an illness, you'll be told "Stop being so lazy" or "It's all in your head" or "Don't use your 'sickness' as an excuse" all the time by your parents, relatives, friends, classmates and even more. Sadly, that includes healthcare professionals: doctors. 

However, Dr. Madarame understands to a great extent what it is like to be with CFS and tries everything he can to help me recover. I was so relieved when I finally got to see such a doctor, and I am really happy about it.

How to cure

There is no known cure or medicine. Methods can vary depending on your doctor. 

I am going to write about my treatment in detail in my future posts. 

My thoughts on the diagnosis 

It may come as a surprise to you, but I'm really happy that I have been diagnosed with CFS.

I know it will sound strange to say that I am happy I have been diagnosed with an illness, but I am being completely honest.

Of course, the diagnosis will never make me healthy. I have no idea how I'm going to feel when I wake up tomorrow morning; I may be feeling the same or even worse than I am today. 

However, it is great to be able to tell myself and people around me that it is not my fault for not being able to study or work as much as I want to. Especially when at times I used to tell myself that I was lazy or that I wasn't pushing myself hard enough.

A lot of thoughts and memories are coming back to my mind now, but I'll write about them bit by bit in my future posts. 

I will continue to try to get better, but at the same time, I'm planning on sharing useful information with people who suffer from CFS/ME as much as possible. (Both in English and Japanese.) 

[UPDATE April 2, 2019]
I started a new blog specifically on Chronic Fatigue Syndrome. I am writing about treatment and prognosis on that blog. Check this out!

▼ME Life is Like...[External link]


I'll put the links to webpages I found which have a list of doctors specializing in CFS.

青山・まだらめクリニック 自律神経免疫研究所

ME / CSF-info 

時事メディカル (名医を探すドクターズガイド)

Also, here are informative sites on CFS.



NPO法人 筋痛性脳脊髄炎の会

Last but not least, I'll share a blog written by an English blogger / YouTuber girl with ME/CFS.

She has been inspiring me a lot not only because she has ME/CFS but that she always stays positive. I have also been learning a lot of English expressions regarding chronic illnesses from her blog. 

Meg Says

関連記事 | Related Posts

The original Japanese version of this article>>慢性疲労症候群と診断される (別名:筋痛性脳脊髄炎)