Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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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