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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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    Free full text:
    https://bmjpaedsopen.bmj.com/content/2/1/e000299


    http://dx.doi.org/10.1136/bmjpo-2018-000299

    https://twitter.com/user/status/1034399519176314880


    https://twitter.com/user/status/1036610655393120256
     
    Tom Kindlon, Sep 3, 2018
    #1
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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    I skimmed through this, and thought that it read a bit like they wanted to be able to slag off patient sites for promoting misinformation, but the participants were consistently positive about them. [edit: maybe I shouldn't post possibly misleading impressions from a late-night reading].
     
    Esther12, Sep 3, 2018
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  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/user/status/1036614500542283777
     
    Tom Kindlon, Sep 3, 2018
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  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Interesting that people accessed AfYME materials. Aren't they defunct now?

    I'm not surprised that they found patient-led resources better than 'official' ones. Official ones promote CBT and GET, while the others don't.
     
    adambeyoncelowe, Sep 3, 2018
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  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Research can take a while to get published.
     
    Tom Kindlon, Sep 3, 2018
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  15. Andy

    Andy Committee Member

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    The paper says "Data were collected between May 2015 and July 2016." and AYME was absorbed by AfME in April 2017.
     
    Andy, Sep 3, 2018
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  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Apart from AFMEs
     
    NelliePledge, Sep 3, 2018
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  17. MEMarge

    MEMarge Senior Member (Voting Rights)

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    9 participants! HOW DO THEY GET THESE THINGS PUBLISHED?

    (hadn't realised CAPS lock was on, but I think I'll leave it)

    At first glance it seems pro ME sites. How will they square this with their advice about limiting total screen time,(including phones)?

    This is supposed to be limited to 3hrs a day (Bath) and 4 hrs (UCH). These times were heard at AfME workshop in Nov 2017.
     
    MEMarge, Sep 3, 2018
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  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    In addition there are parents on FB site who are being threatened with Social Workers, by the Clinic, because they cannot stop their teens using their phones too much.
    Do these people know nothing about youngsters in current society?
     
    MEMarge, Sep 3, 2018
    #18
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  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Qualitative research, where you interview people and then transcribe interviews, generally involves small sample sizes. Many/most I’ve read seem in range of 10 to 20 or so.
     
    Dolphin, Sep 3, 2018
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  20. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 3, 2018
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