*This part was completed with help from the Japanese Red Cross Language Service Volunteers Web Services.

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1.   gMemorium Listh -12 May Awareness in 2003 by the National CFIDS Foundation

       Copyright © 2003 the  National CFIDS Foundation

        http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0606C&L=CO-CURE&P=R1869

 

2.    gFirst official UK death from Chronic Fatigue Syndromeh.

  [New Scientist]  by Author: Rowan Hooper, Copyright © New Scientist

 http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0305B&L=CO-CURE&P=R1232@

 

3.   Words List  

*Copyright © 2008 The Japanese Red Cross Language Service Volunteers Web Services.  This list should not be used without the permission of The Japanese Red Cross Language Service Volunteers Web Services. 


Particularly when children start having symptoms of CFS, they are likely to have a difficult time as theyfre not old enough to explain their problems well to parents and doctors.  

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In my case [I started having CFS symptoms at the age of 15.]

1.   I needed to get off train almost at every station to vomit on the way to school.

2.   I was not able to have enough rest for recovery because of lack of understanding of the school teachers, 

people around myself and misunderstanding. They labeled me as glazyh, gself-centeredh, and gunwilling to studyh.

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3. I often heard insensitive words from doctors, who said, gYoufre bothering meh, hCFS?  I donft believe it.  Why can't you think you are all right to die? Even if you would die, nobody would care and nothing would change.h

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4. Because of the normal blood test results that I always had (ESR, CRP), doctors criticized me by saying, gIt is just a psychological matterh, gItfs cased by your mother  who is not raising you properly.  " (When doctors blame mothers, the children feel guilty about themselves.)

   

 

   

The lists above are only part of my bitter memory. The memorial list includes many CFS patients who committed suicide after having lost the spirit to live anymore due to lack of understanding from their friends and societies about this disease. I believe there are many CFS patients who have been under the same situation in Japan.@

 

 

Some of the patients with Relapsing Polychondritis [http://rpolychondritis.tripod.com/DRTrentham.html]- rare autoimmune disease, ratio of the onset of this illness is thought about 3.5-5/million - have normal blood test results(ESR,CRP) in spite of having serious systemic inflammation. Given this, Ifd like you to understand reality of CFS and urge you to rethink the common understading in the medical circle that result of blood test is everything. Normal blood test results do not necessarily mean you donft have a systemic inflammation.

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I sincerely appreciate the team of The Japanese Red Cross Language Service Volunteers Web Services and Ms. Eriko Watanabe who is the coordinator of the services.

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Rika Kageyama

Administrator, Co-Cure-Japan

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