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"Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome"-Bell et al, 2001

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 20, 2014.

  1. Dolphin

    Dolphin Senior Member

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    This is a 2001. I just read it but my point on recovery may not be very exciting for many.

    Anyway, full text is free here: http://128.121.104.24/Bell.pdf

    *I gave each sentence its own paragraph
    Last edited: Jan 20, 2014
    Valentijn and Esther12 like this.
  2. Dolphin

    Dolphin Senior Member

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    I've seen this paper summarised that 80% recovered. However, the details are quite a bit different.

    As the abstract effectively says, participants had four options:
    Among other things they were asked:
    The VAS scores of the recovered groups demonstrated quite large variations:
    Also
    A recovery rate of 25.7% is a lot different to 80%.

    Such lack of full recovery was found in a recently published (well, in 2012) 25-year follow-up study on the same cohort: http://forums.phoenixrising.me/inde...m-outcomes-of-chronic-fatigue-syndrome.18193/.
  3. taniaaust1

    taniaaust1 Senior Member

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    I think that person had a very important point. Those who have been sick from children may not even know what it feels like to be well. Hence questionaires to try to work out how people are doing, may not at all give accurate indications.

    This study thou showed some important things eg something Ive always believed, that being the sicker one is in the early years.. the more severe this illness may be for the person and the harder it may be to overcome and find a way to get well.
    Snow Leopard and justy like this.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  5. SOC

    SOC Moderator and Senior Member

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    My daughter says something similar. She's been ill since she was 12yo. She feels she can't really judge if she's truly feeling well and normally energetic because she doesn't remember what being fully well feels like. She's comfortable saying she's fully functional because she works a normal schedule, socializes as much as she wants, doesn't get PENE when she increases her activity. But is she well? Does she feel as energetic as other people her age? She can't tell. Kinda sad. :(
  6. Valentijn

    Valentijn Activity Level: 3

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    If they aren't sure if they're well because they don't know what it felt like, then they aren't well. They'd know it if they felt it.
    SickOfSickness likes this.
  7. SOC

    SOC Moderator and Senior Member

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    I suspect you are right. That is one of the reasons we don't believe my daughter is cured. Fully functional maybe, but not cured. I dunno wth "recovered" means, so we don't use that either. ;)
    justy and Valentijn like this.

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