English version of Japanese news segment on ME/CFS

shiso

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NHK (the Japanese equivalent of BBC) aired a brief news segment on ME/CFS late last month, focusing on the advocacy efforts of a severe Japanese ME patient. An English version prepared by NHK World is now available online for a week starting today (please note the link will not work after end of the week).

http://www.nhk.or.jp/nhkworld/english/movie/feature201102101020.html

Unfortunately, there is a bit of a "lost in translation" effect due to the chipper non-native English-speaking narrator, and the feature is ineptly titled "Weakened Crusader," which does not accurately depict the segment or the featured patient.

While nearly completely bedridden (she requires help with self-care and cannot type her own emails), the patient (who got sick and was diagnosed while living in the States 20 years ago) started what is the only active ME/CFS patient advocacy group in Japan last year with the help of some healthy supporters.

In the past year, she got a personal meeting with equivalent of the Assistant Secretary of Health presenting a list of demands from patients from her horizontal wheelchair, and in addition to advocating for the Japanese government to fund real ME research into causes and treatment, including research into a retroviral cause, she has made direct connections with doctors and virologists who are interested in getting involved in retrovirus research.

ME is even more invisible and unrecognized in Japan than it is in the US and UK. While there is a very small contingent of researchers who have been conducting research since the 1990s, not even bare bones news surrounding XMRV (such as the coverage in WSJ, Newsweek and NY Times) has surfaced in a single mainstream Japanese newspaper or TV program on the subject since the publication of the Science paper. There are no ME online patient forums in Japan and no national or local advocacy groups (other than this one startup group) - the situation really is of deafening silence - even on the Internet. So, while the coverage itself is not especially in-depth, the news segment is a milestone given the context.
 

cigana

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Thanks for posting this Shiso, I had no idea the situation was so bad in Japan. I naively assumed that because they have a sensible name for the illness (Low Natural Killer Cell Disorder) they treated patients better there...