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Could disease labelling have positive effects? An experimental study exploring the effect of the CFS label on intended social support, 2018, Noble

Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Dec 8, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    Paywalled at https://www.sciencedirect.com/science/article/pii/S0738399118308838
     
  2. Unable

    Unable Senior Member (Voting Rights)

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    So what were they comparing this to? People with NO health issues?

    Might have been a more interesting study, if they had also looked at various other named diseases eg:
    Cancer
    Parkinson’s
    Myalgic Encephalomyelitis
    Heart Disease

    and then to compared “Chronic Fatigue Syndrome”.

    Guess which would get least notional support!!!
     
  3. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Did they ask any young people with 'CFS' what their experience was? No. Anyone can express good intentions, but reality can be very different. I fail to see the usefulness of this study.
     
  4. Trish

    Trish Moderator Staff Member

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    It sounds like a simple student project. Get a bunch of students to answer a hypothetical question about what support they might give to a friend diagnosed with CFS, and compare it with what another sample of students says they would do for a friend with symptoms without a name.

    Conclude that it's helpful to have a name for your condition.

    Why not actually ask pwME, and people with another better known and equally disabling condition, about how supportive their friends actually are?
     
  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    This might have been more useful in the 90s when there was debate as to whether to diagnose us at all and if it was harmful too. Perhaps that still lingers in some areas. CFS versus nothing wins but CFS generally is a handicap name afaic.
     
  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    We have probably all heard "I'm tired too", when the CFS label is mentioned.

    Support from friends for having CFS, does occur, but in my experience is rare. People have responded by saying CFS is short-lived, non-existent, a scam, just burn out etc.

    I use the term ME now, and have for years. People think this sounds dire - which it is. People laugh at the CFS label.

    This study seems to be a response to the justified disgust the ME community has for the stupid term "CFS". This research is unconvincing re real world experiences.
     
    MEMarge, MyalgicE, rvallee and 5 others like this.
  7. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    The abstract sounds like they compared a hypothetical person with tiredness symptoms and no diagnosis to one with tiredness symptoms and a CFS diagnosis. Sort of a no brainer. A comparison with a range of alternative labels (ME, SEID) may have started to be interesting.
     
  8. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    People's hypothetical support often greatly exceeds their actual support. I, of course, am really going to end world hunger.
     
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  9. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    I'm going to end all wars!
     
  10. Webdog

    Webdog Senior Member (Voting Rights)

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    From the 2015 IOM/NAM report:
     
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