Suddenly one day, she was overcome by a
sense of systemic malaise, fatigue followed by low-grade fever --
i.e. "chronic fatigue syndrome" (CFS). While there are many
cases developing from one`s twenties to one`s forties, in the prime
of life, the exact cause is unknown and there is no simple treatment.
Diagnosis is difficult and the symptoms are similar to depression.
There are also doctors who do not know or will not acknowledge the
disease, and patients get passed around by general practitioners and
psychiatrists. (Akiko Hosokawa)
Something happened inside the body of a
woman (40) in Tokyo in March of 2009. She broke out in a fever of 39
degrees and hence took anti-fever medication, but a low-grade fever
continued to last for more than a week. She fell into a brain fog and
could not understand the content of conversations while the slightest
of movements left her breathless. Gradually, general muscle strength
became so weak, she was not even able to grasp the pots on the stove.
She was treated, but there was no alleviation of symptoms, and she
was diagnosed with CFS six months later.
She is a single mother, with a daughter
(12) in junior high school and a son (10) in elementary school. Since
August of 2010 she has been on leave from work but the low-grade
fever and headache still continue. She is almost completely bedridden
and gets around in an electric wheelchair. Her children prepare her
meals and take care of her. She says she feels a little better when
taking Chinese medicine and or when receiving a massage to increase
blood circulation. "Since I am able to move around as I would
like, I think I will be leaving my children with some bitter
"Many CFS patients are in their
twenties to forties with a good percentage of these being women,"
points out CFS leading authority Kansai University of Welfare
Sciences Professor KURATSUNE Akihiko. He guesstimates there are over
three hundred thousand patients in Japan.
CFS is distinguished by a sense of
languor and weakness, followed by a low-grade fever, and muscle and
joint pain. While diagnostic criteria is based on such things
as this continuing for more than six months and disrupting daily
life, a number of doctors also base it on the patient having swollen
lymph nodes. In some cases, when a general examination finds no
abnormalities it is suspected the patient is feigning the illness.
One women with a sudden worsening of symptoms ran to the local clinic
and when she mentioned CFS she was told that "CFS can not be
diagnosed or treated."
Many patients also complain of symptoms
besides the physical symptoms, such as insomnia and a reduction in
concentration and the ability to think. INOUE Michichika of the
"Ikebukuro Clinic" in Ikebukuro, Tokyo states, "It is
difficult to distinguish between depression, and often patients
wander from hospital to hospital." Since the symptoms overlap
between psychiatry and internal medicine, it is important to have the
cooperation of both here.
While it is not clear what causes the
onset of symptoms, when patients' blood is examined, there are cases
where some sort of virus is found and KURATSUNE points out that there
must be some connection with the immune system.
One distinguishing factor found in
patients' blood is a higher than normal presence of reactive oxygen
species and sometimes medicines are prescribed which lowers the
amount of these.
However, at present, there are only
specific treatments available to alleviate each symptom. And while
some patients return to a normal everyday life, there are others who
suffer for more than ten years without an alleviation of symptoms.
A study group with the Ministry of
Health, Labour and Welfare, in which KURATSUNE is participating, is
making advances in diagnostic criteria like checking the pulse from
the fingertip to determine autonomic system balance. Kuratsune
states "If you feel tired, take a rest, and if that does not
help, then see a specialist."
◆ Outside the Scope of Welfare
Some CFS patients whose symptoms become
severe end up bedridden and require assistance to eat and to go out.
However, if their symptoms are not constant, then it is difficult for
them to get disability benefits.
In the Comprehensive Welfare Act for
Persons with Disabilities set to take effect in April, patients with
intractable diseases who do not have a disability will also be able
to receive welfare services such as aid payment and housework
assistance. However, CFS is excluded.
Dr. SHIN Isu of the Sekimachi Medical
Clinic in Nerima-ku, Tokyo, points out that "The word 'Fatigue'
in the disease name does not reflect the actual conditions. It
invites misunderstanding and this is one factor as to why these
people cannot receive social security benefits."
It is said that some doctors in Canada
and the United Kingdom advocate a name change to "Myalgic
Encephalomyelitis" because there are such things as inflammation
of the brain, etc. in critically ill patients. Dr. Shin also agrees
with a name change. He states, "I would like for the critically
ill to be able to receive welfare services on a priority basis."