Disability Adjusted Life Years - graph source / citation?

[ScottTriGuy]

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!

 

[Old Bones]

@ScottTriGuy I think this is what you are looking for:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044706/

 

[Denise]

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."

 

[Asa]

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."

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

 

[ScottTriGuy]

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"

 

[sdmcvicar]

Australia's DALY calculation for CFS from 2003:

http://www.aihw.gov.au/publication-detail/?id=6442467990

And a nice bonus link to the spreadsheets with YLL, YLD, etc:

http://www.aihw.gov.au/bod/bod_summary_sheets/aus.xls


DALY will be very tough because of disagreements on incidence, diagnostic criteria, symptom severity, etc. Since it's a political hot potato as well as a difficult calculation to make, it's not that big a surprise there's nothing official in the US.

 

[viggster]

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.