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The Neurological Alliance: Patient experience survey

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Dec 4, 2018.

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  1. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    If you want a graph that shows it differently (which would be more logical and easier to understand), I tried to make one:
    upload_2019-7-10_11-18-25.png
     
    ME/CFS Skeptic, Jul 10, 2019
    #21
    Annamaria, Lucibee, Little Bluestem and 9 others like this.
  2. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    One problem with reducing "quality of life" or "ability to carry out day to day activities" is it doesn't take into account within-disease variation. It says nothing of the degree of variation and overlap...
     
    Snow Leopard, Jul 10, 2019
    #22
    Annamaria, Sarah94 and Andy like this.
  3. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    There's also the possibility that quality of life in ME/CFS is so low because a large impairment to do activities is part of most case definitions. Perhaps some patients have the same illness in a less severe form. But because of the severity requirement in case definitions, they would not be diagnosed with ME/CFS. In neurological illnesses that are based on biological marks, the diagnosis is made differently and there might be less of a selection based on severity.

    I do remember a study by Jasons group which said that the severity criterium is redundant in case definitions with multiple symptoms and PEM as a requirement, but I can't find it at the moment.
     
    ME/CFS Skeptic, Jul 10, 2019
    #23
    Annamaria, ladycatlover, rvallee and 4 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    I have what’s called mild ME I’ve had to retire from my job, having to sell my house to live somewhere more accessible, moving cities because travelling back and forth a 100 mile one hour each way trip makes a lot of my potential social activity out of reach, I cant manage a one basket supermarket shop without feeling wiped out. I can make it out of the house so I’m lucky in ME terms but literally everything I do is affected by ME all the time so yeah my quality of life is badly affected.
     
    NelliePledge, Jul 10, 2019
    #24
    Annamaria, Sunshine3, ladycatlover and 11 others like this.
  5. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    That is not mild in any stretch of the imagination...
     
    Snow Leopard, Jul 10, 2019
    #25
    Annamaria, ladycatlover, Little Bluestem and 7 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
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    I agree but I can still do stuff live alone do all my activities of dailyliving for myself in ME terms it is mild/moderate borderline. But that’s just comparing with people with ME. We had a great thread a while back about severity and terminology. And I definitely vote for ditching mild.
     
    NelliePledge, Jul 10, 2019
    #26
    Annamaria, ladycatlover, Wilhelmina Jenkins and 10 others like this.
  7. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    Yes, if the question was "How many times", why is the label on the left axis in percents?
     
    Little Bluestem, Jul 14, 2019
    #27
    Sarah94, Annamaria, Trish and 1 other person like this.
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