May - June 1999
CFIDS in Japan
By Rika Kageyama
am one of two volunteer translators who
are doing our best to translate into Japanese precious information about chronic fatigue syndrome that
has been published in English. I also have translated Japanese papers into English. The translations are
posted on the Internet by Sage Matsushima, web master of CFS Network Japan (http://www.bekkoame.ne.jp/~sage-m/)
and the leading political activist on behalf of CFS patients in Japan.
The work is difficult and
tiring, and because of the custom in our culture against self-promotion, most of our work has been done
anonymously. Nevertheless, I will tell you about myself. I have suffered with CFS for almost 20 years.
My onset was sudden, at the age of 15, in 1979. However, I was not diagnosed until 1989, while I was in
the United States as a college student.
Although I tried in vain to complete a master's degree
at the University of Washington, I had a wonderful and beautiful time for almost three years in the United
States. There, I knew that I did not need to blame myself for my illness and that I should not be afraid
to be helped by other people. That is totally different from the way sick and disabled people are treated
in Japan. When I returned to Japan in 1991, I had to forget about those memories and tell myself that
in the United States I was spoiled and that my experience was not real in order to adjust myself to life
I had a rough time in Tokyo because the majority of Japanese doctors were completely
ignorant about CFS, despite a working party on CFS set up by our government in 1992. My battle continued
until 1996 when I found my current doctor, who showed me a learning attitude. I remember that I felt as
if I was sliding back in time during the difficult battle against doctors in Tokyo. Even now, CFS is still
largely unknown in Japan for the lack of information.
I don't want to express my situation as sad,
although it sounds miserable. It is truly my choice to be here in Japan to take care of my mother, who
loves Japan so much and whom I love so much. So I don't think I could leave Japan while my mother is alive,
and I want her to live as long as possible. But honestly, it has been very difficult since coming back
Recently, I heard the new word "challenged" on TV news for the first time to describe
disabled people. The newscaster commented that in Japan, we have misinterpreted the word "independent,"
which has been used for disabled people in the West, and we kept requiring disabled people to support
themselves by themselves. But in the United States, disabled people are thought of as people given challenges
by God and worthful people to be helped by healthy people. It will be a very difficult thing for Japanese
society to accept this concept, but I hope I will be able to share what I learned from American people
with people around me here, including with my mother. This could be my true "grassroots activity."
year, Dr. Hirohiko Kuratsune at Osaka University's blood oncology department, one of the official members
of the Japanese working party on CFS, introduced me to Sage Matsushima's web site, CFS Network Japan.
We had been talking about the efforts that were being made against our Health Ministry's discouraging
decision to close its official working party on CFS. Eventually, the party was closed, but because of
the hard work of patients to lobby against the decision, CFS research was not abandoned altogether. CFS
is still being studied in Japan under a different working party on "Fatigue," but the Health Ministry
is currently said to be spending only about $34,000 a year on CFS.
Since then, because I was quite
well-informed about CFS through my friends in the United States, by a wonderful doctor (my ex-physician
in Seattle, Dr. Richard Muirhead, who has continued to be supportive of me), and by being able to use
the Internet, I have played a role as an information supplier to Japanese CFS patients via Mr. Matsushima
and CFS Network Japan. I am very honored to be working with Mr. Matsushima, who has made a great and valuable
effort to bring together and help many Japanese CFS patients by meeting them and exchanging mail. Also,
regardless of his own difficulties and the fact that CFS Network Japan gets so little in donations due
to our social custom, Mr. Matsushima has even shared his own limited income to help CFS patients with
severe financial problems.
My motivation to dedicate myself so seriously to this translating role
also comes from my astonishment at the typical behavior of patients in Japan. Generally patients have
had very little information about their own illness and they been so obedient to doctors' words. If doctors
say "There is no medicine for CFS," then patients believe the words completely, they thank their doctors
and give their life up without any effort to break through. What I wanted to do has been to shout to them,
"Hey, there is endless hope outside of Japan! Don't give up!" I learned that supplying the information
from outside of Japan is the only way for patients to be aware of it. Dedicating myself to this role has
also helped me to make living matter, despite my condition.
Just recently, I heard discouraging
reports from Mr. Matsushima that patients who have taken our translated information on CFS to their doctors
have gotten quite unpleasant reactions from their doctors. Still, I believe that only well-informed patients
can give our doctors and our government the kick in the rear that they need. This is what I learned in
the United States.
From my own experience of the medical world in both the United States and Japan,
I am keenly aware that even today, the Japanese medical world is much more closed to accepting CFS than
the medical community in the United States. My hope is that our translating project will be able to spread
valuable information about CFS and become a grassroots activity that could have some influence toward
opening the narrow attitudes of the medical world in Japan about CFS and for the ultimate benefit of patients,
doctors and society here.
Rika Kageyama lives in Tokyo, Japan.
She provided translating
assistance to The CFIDS Association in obtaining comments from Japanese PWCs on the name change criteria.