It is not understood from society, it is overlooked - the voice of a patient of "chronic fatigue syndrome" patient (Japanese report)

rvallee

rvallee

Senior Member (Voting Rights)
The translation isn't all that great but not a bad article from Yahoo! news in Japan: https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://news.yahoo.co.jp/feature/1117.

A lot has been written about the Hikikomori culture in Japan, recluse people who have withdrawn from society. I often wonder how many of them have ME or another "invisible" disease. Definitely not all, but possibly most or at least a large plurality.

Edit: Hikikomori, not Otaku; and I'm not saying there's a link, just that likely many among those counted as recluse by choice are actually sick and just miscategorized.
 
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Quite weird to link Otaku culture with ME, in my opinion.

Japan has definitely seen a rise in people becoming very insular and living lives without big social ties or connections outside of work. I’m not sure that, or otaku (essentially a pejorative term for a geek who’s animé, manga, video games etc, for those unfamiliar) culture have much of an overlap with ME any more than any other serious illness.

Not that any country is an easy one to have ME in, but I can’t imagine japan being a very easy one for patients.
 
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JaimeS said:
Otaku = rabid fan of some fandom

You mean hikikomori: https://en.wikipedia.org/wiki/Hikikomori

And yes, they start out as "school refusers"... which does have a bit of a chronic illness tinge.
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Yes, Hikikomori. I knew there was a more accurate term but had no clue what it was.

I'm not saying there's a relation, just that many of those counted as "recluse" are likely sick instead and so this inflates their numbers while losing the sick entirely.
 
I remember seeing one or more CFS studies on children and adults from Japan, which suggested the prevalence there was higher than most of the figures that had come from other countries.

It seems plausible to me that CFS might be more prevalent, where people have less chance to rest when they have the infection initially. And also then when they have CFS, where there might be less chance to rest, either in general or during relapses/flareups.

It would be interesting if this was proven as it would help deal with any perception that CFS was related to being work-shy or from not pushing yourself enough.
 
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I remember around a decade ago, Dr Ros Vallings, giving the impression to people in New Zealand that Japan was spending something like $50 million on CFS research, and that the country (New Zealand) shouldn't focus too much on raising money for research and concentrate instead on other things.

This frustrated me because:

(i) I was never convinced about the figures for Japan. For example a lot of the research being funded seemed to be run about fatigue and nothing to do with chronic fatigue syndrome specifically.

(ii) I think we need as many countries as possible contributing money to research, particularly countries like New Zealand where there are a decent number of people diagnosed (I could understand in some countries focusing more on other initiatives for a while while diagnosis rates were very low).
 
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#MEAction has talked to groups in Japan -- ME is definitely 'on the radar' there. But it's also true that there's a cultural push for doing one's best/trying one's hardest despite obstacles that, IMO, seems to eclipse what we have in the US & Europe.
 
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