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Disability Adjusted Life Years - graph source / citation?

Discussion in 'General ME/CFS News' started by ScottTriGuy, Apr 17, 2016.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    A supporter of the ME community has been doing some research - she found this very compelling graph on the Cort Johnson site but cannot find the original source (that includes the ME/CFS dot) in spite of searching for an hour - she's asked us for help:

    http://www.cortjohnson.org/forums/t...atigue-syndrome-funding-high-disability.3410/

    Tagging @viggster because I think me may know.

    (I would email Cort but am away from home and don't have my p/w for his site)

    Thanks!
     
  2. Old Bones

    Old Bones Senior Member

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  3. Denise

    Denise Senior Member

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    I don't think a formal (journal published study) of ME/cfs DALY has been done.

    The one posted by @ScottTriGuy seems to come from
    http://www.cortjohnson.org/blog/2015/12/09/nih-funding-shift-chronic-fatigue-fibromyalgia/

    http://www.cortjohnson.org/wp-content/uploads/2015/12/Burden_Illness_NIH_Funding_2015.png

    chrome://global/skin/media/imagedoc-darknoise.png
    rather than from a journal article/study.

    As recently as July 2015, Occupy CFS said this about ME/cfs DALYs
    "For example, ME/CFS is a disabling disease that costs the US economy more than $20 billion per year, but it was not included in the GBD study. No one has calculated a DALY figure for ME/CFS in the United States. And so, left to fall through the cracks, the burden of this disease is not considered in decision making."
     
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  4. Asa

    Asa Senior Member

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    Over and over and over... US and EU governments disappear people with ME. Reminds me of:

    upload_2016-4-17_21-8-23.png
     
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  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks all for your feedback. Looks like this is the most recent info:

    "No one has calculated a DALY figure for ME/CFS in the United States"
     
  6. sdmcvicar

    sdmcvicar

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    Valentijn and ScottTriGuy like this.
  7. viggster

    viggster Senior Member

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    Yes, I made that chart with a very rough estimate. Someone in Australia calculated a DALY for ME, as Mary Dimmock detailed in her book "30 Years of Disdain..." And then I extrapolated with estimates of US ME population. It's very rough - the point was to show ME is an extreme outlier for funding.
     
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