1. Guest, read the 'News in Brief' post for w/c 17th June by clicking this link.
    Dismiss Notice

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

Discussion in 'General ME/CFS News' started by rvallee, Nov 6, 2018.

Tags:
  1. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    1,648
    Likes Received:
    13,467
    Location:
    Canada
    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    A lot has been written about the Hikikomori culture in Japan, recluse people who have withdrawn from society.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.
     
    Last edited: Nov 6, 2018
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,001
    Likes Received:
    20,727
    Location:
    Norway
    Nice to see news stories about ME in Japan. Is the article from today?
     
  3. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

    Messages:
    249
    Likes Received:
    2,422
    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.
     
    Last edited: Nov 6, 2018
    Sly Saint, petrichor, Rosie and 7 others like this.
  4. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

    Messages:
    438
    Likes Received:
    3,052
    Location:
    United States
    Hikikomori is the word for the 'recluses'. The reason(s) for their withdrawal seem very different than that for ME patients.
     
  5. JaimeS

    JaimeS Senior Member (Voting Rights)

    Messages:
    1,246
    Likes Received:
    9,343
    Location:
    Stanford, CA
    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.
     
  6. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    1,648
    Likes Received:
    13,467
    Location:
    Canada
    October 19, I think. If the date format was translated properly.
     
    MEMarge, ladycatlover and Kalliope like this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    1,648
    Likes Received:
    13,467
    Location:
    Canada
    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.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    1,648
    Likes Received:
    13,467
    Location:
    Canada
    All I'm saying is some counted as one are likely the other, not that there's a relation between either. They just get lost by miscategorization.
     
  9. Hutan

    Hutan Moderator Staff Member

    Messages:
    4,731
    Likes Received:
    21,753
    From the article:
    It would be great if someone from the association could become a member here and let us know more about ME/CFS in Japan. I guess language is a significant barrier.
     
  10. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    1,476
    Likes Received:
    7,267
    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.
     
    Last edited: Nov 7, 2018
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    1,476
    Likes Received:
    7,267
    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).
     
    Last edited: Nov 7, 2018
  12. JaimeS

    JaimeS Senior Member (Voting Rights)

    Messages:
    1,246
    Likes Received:
    9,343
    Location:
    Stanford, CA
    #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.
     

Share This Page