1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 4th November 2024 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

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.

Tags:
Page 1 of 3
  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    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
    Invisible Woman, Webdog, Snow Leopard and 8 others like this.
  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
     
    Tom Kindlon, Sep 3, 2018
    #2
    Invisible Woman, MEMarge, adambeyoncelowe and 3 others like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
     
    Tom Kindlon, Sep 3, 2018
    #3
    Invisible Woman, andypants, MEMarge and 3 others like this.
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
     
    Tom Kindlon, Sep 3, 2018
    #4
    Webdog, Invisible Woman, MEMarge and 4 others like this.
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
     
    Tom Kindlon, Sep 3, 2018
    #5
    Invisible Woman, MEMarge, Trish and 3 others like this.
  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
     
    Tom Kindlon, Sep 3, 2018
    #6
    Invisible Woman, MEMarge, Trish and 3 others like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
     
    Tom Kindlon, Sep 3, 2018
    #7
    Invisible Woman and MEMarge like this.
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    Tom Kindlon, Sep 3, 2018
    #8
    Invisible Woman, andypants and adambeyoncelowe like this.
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
     
    Tom Kindlon, Sep 3, 2018
    #9
    Invisible Woman, andypants, MEMarge and 1 other person like this.
  10. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    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
    #10
    Invisible Woman, andypants, MEMarge and 5 others like this.
  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    https://twitter.com/user/status/1036614500542283777
     
    Tom Kindlon, Sep 3, 2018
    #11
    Invisible Woman, Hutan, Wonko and 1 other person like this.
  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    Tom Kindlon, Sep 3, 2018
    #12
    Invisible Woman, andypants, Hutan and 2 others like this.
  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,736
    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
    #13
    Invisible Woman, EzzieD, andypants and 6 others like this.
  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    Research can take a while to get published.
     
    Tom Kindlon, Sep 3, 2018
    #14
    Invisible Woman, MEMarge and Trish like this.
  15. Andy

    Andy Committee Member

    Messages:
    23,034
    Location:
    Hampshire, UK
    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
    #15
    Invisible Woman, MEMarge, Trish and 3 others like this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,851
    Location:
    UK West Midlands
    Apart from AFMEs
     
    NelliePledge, Sep 3, 2018
    #16
    Invisible Woman, Andy, adambeyoncelowe and 4 others like this.
  17. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,926
    Location:
    UK
    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
    #17
    Invisible Woman, EzzieD, andypants and 7 others like this.
  18. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,926
    Location:
    UK
    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
    Invisible Woman, EzzieD, andypants and 7 others like this.
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,795
    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
    #19
    Invisible Woman, Lisa108, Hutan and 4 others like this.
  20. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    Tom Kindlon, Sep 3, 2018
    #20
    Invisible Woman, Amw66, adambeyoncelowe and 2 others like this.
Page 1 of 3

Share This Page