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Using the internet to cope with chronic fatigue syndrome/myalgic encephalomyelitis in adolescence: a qualitative study (Brigden et al., 2018)

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Tom Kindlon, Sep 3, 2018.

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  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
    #21
    Invisible Woman, adambeyoncelowe, Trish and 1 other person like this.
  2. Marky

    Marky Senior Member (Voting Rights)

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    Its fascinating all the useless research that is funded and allowed published
     
    Marky, Sep 3, 2018
    #22
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  3. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    This sort of research might not be exciting, but I don't agree that it's useless.
     
    Snow Leopard, Sep 3, 2018
    #23
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  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
    #24
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  5. Marky

    Marky Senior Member (Voting Rights)

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    Why though? Might as well do a study to check if patients enjoy eating food:whistle:
     
    Marky, Sep 3, 2018
    #25
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  6. Wonko

    Wonko Senior Member (Voting Rights)

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    I believe they already do this sort of study.

    They also regularly check to see if it's hot in India, they have whole teams of people to check if antarctic ice is cold, if the atmosphere continues to exist, and if so.....what exactly is it today etc.

    They check all sorts of things, I can't believe no ones checked if people like eating food - if they haven't done the research then possibly this whole growing things/civilisation lark should be reconsidered due to lack of evidence.
     
    Last edited: Sep 4, 2018
    Wonko, Sep 3, 2018
    #26
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  7. Andy

    Andy Committee Member

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    While I would certainly prefer the money spent on this survey to have gone on biomedical research, from the little I've read it seems to provide a useful counterpoint to the old "membership of internet groups is a sign of worse outcomes" meme, especially as its done by Crawley.

    ETA: It doesn't provide a complete counterbalance to that argument but it provides reasons why use of internet groups can be helpful.
     
    Andy, Sep 4, 2018
    #27
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  8. Amw66

    Amw66 Senior Member (Voting Rights)

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    I think there will be avlot more over the next 18 months to feed into NICE guideline review
     
    Amw66, Sep 4, 2018
    #28
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  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 4, 2018
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  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 4, 2018
    #30
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    It might also help to bolster Esther Crawleys push for FITNET-NHS by showing that adolescents are more responsive to online 'help'.
     
    Sly Saint, Sep 4, 2018
    #31
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  12. Sean

    Sean Moderator Staff Member

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    Are they saying that the internet is not the vector and multiplier for epidemics of health hysteria? :confused:

    But I was assured by world leading expert Sir Simon Says that it is, and that online patient forums in particular are born straight from Lucifer's own bottom. :devilish: :nailbiting:
     
    Sean, Sep 4, 2018
    #32
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  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 4, 2018
    #33
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  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 4, 2018
    #34
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  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://bmjpaedsopen.bmj.com/content/bmjpo/2/1/e000299.reviewer-comments.pdf

    PEER REVIEW HISTORY

    [..]

    VERSION 1 - REVIEW
    REVIEWER
    Reviewer name: van de Putte, Elise
    Reviewer Affiliation: Wilhelmina Children's Hospital, General
    Pediatrics
    No competing interests

    Where at least one Dutch clinician is at, believing CBT and the like can cure the illness.
     
    Dolphin, Sep 4, 2018
    #35
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  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Comments from another reviewer, which seem reasonable enough.

    https://bmjpaedsopen.bmj.com/content/bmjpo/2/1/e000299.reviewer-comments.pdf

     
    Dolphin, Sep 4, 2018
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  17. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Sep 4, 2018
    #37
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  18. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Wow, that's highly speculative and a strange thing to suggest given the nature of the study.
     
    Snow Leopard, Sep 4, 2018
    #38
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  19. Marky

    Marky Senior Member (Voting Rights)

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    To be fair this is exactly the kind of absurd spin they usually do when referencing articles (which few read), i`d say it remains to be seen:p
     
    Marky, Sep 4, 2018
    #39
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  20. TiredSam

    TiredSam Committee Member

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    I thought seeking help online was a big no-no for ME sufferers, they should be dissuaded from googling ME and joining online support groups at all costs?

    Now that Crawley's pushing FITNET, suddenly we have "research" from her (9 participants, usual spin) showing that the internet is suddenly a great thing for ME.

    BPS crew using "research" to advertise their latest money-spinner. Excuse me for barely raising an eyebrow.
     
    TiredSam, Sep 12, 2018
    #40
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