Discussion in 'General ME/CFS Discussion' started by A.B., Jan 22, 2014.
I made this after coming across the NIH site.
Good graphic! A picture's worth a thousand words. Very telling!
Perhaps this could be submitted to the IOM.
Indeed. My first thought was: with a funding policy like this, it's no surprise that progress in understanding and diagnosing CFS is proceeding at a snail's pace.
The "Final" NIH 2014 Budget was just announced.
Total NIH funding has been increased by $1.01 Billion over 2013 levels, from $28.92B to $29.93B.
A portion of that 3.5% increase should be allocated to ME/CFS & other neglected underfunded diseases.
Source: Science, 17 January 2014 "Final 2014 Budget Helps Science Agencies Rebound."
I haven't updated it with recent data, but here is my previous analysis:
Note that the NIH has a (never imposed) mandate to award research funding based on societal impact (typicaly measured using DALYs). The reason why it is not accounted for is because the DALY studies including the recent one funded by the Gates Foundation chose to ignore CFS or ME. The figures I am using are from the Australian DALY study (adjusted for US prevalence), which is the only study to actually bother.
CFS/ME is underfunded by a magnitude of order (I used a logarithmic graph), which is to say that the funding needs to be increased by something like 20 times for its funding to be on par with asthma or depression. Underfunded by a magnitude of order means that a precise prevalence measurement is less relevant - 0.1% still means the funding has to increase by over 10x to be on par.
What you have done is extremely valuable. It is so striking however that it makes me feel very hopeless
today. The "impact" upon society is profound for our disease as you know. I also think part of
our problem is being too sick to advocate and that many of those who are closest to us
aren't supportive enough - or don't have the energy themselves if trying to help- to go do
Wasn't there something about Obama telling - was it HHS? - to put CFS on the "fast tract" last year?
Pardon my ignorance about these things....haven't had the energy to keep up with all that's going on.
Snow Leopard, by any chance do you have the reference where the mandate to fund based on impact is spelled out, i.e., the NIH Mission Statement, its charter, etc?
They tend to bury it because they don't seem to be very proud of it. It is just loosely worded with no specific obligations - simply something that they 'must' consider when awarding grants.
Have been some recent studies, but none of them consider CFS or ME.
New evidence on the allocation of NIH funds across diseases.
Plenty of discussion about the merry-go-round and how some patient groups are becoming increasingly powerful (and of course asking for their disease to be favoured).
http://phenomena.nationalgeographic.com/2013/03/06/advocacys-power-and-the-disease-olympics/ (discussing the above article)
(implications of 2010 disease burden study)
"Gates Foundation chose to ignore CFS or ME."
I've been thinking for some time that we might need to start a petition to Gates or the Gates Foundation to help with our problem. They send millions to Africa for malaria treatment and research. How about a little help for an epidemic right here at home?
SL, good article. Similar one from 2011 (using 2006 data) cites AIDS, diabetes & prenatal conditions as overfunded while depression, injuries & COPD were underfunded. Concludes: NIH funding correlates modestly with burden & the correlation has not improved in the last decade.
Haven't read the Australian report you reference re: ME/CFS DALY. Do you happen to know how they calculated that DALY? Reason for asking patient surveys done prior to last year's FDA meeting produced data on years of disability & degree of functional impairment. Could it be used to compute a DALY for example?
Agree. Could send Gates a copy of the FDA's "Voice of the Patient" highlighting the years of disability & degree of functional impairment reported in the patient surveys. That data seemed to get the attention of some of the government officials. It wouldn't hurt to send it to WHO as well.
We need to form some kind petitioning team.. to focus on various areas which need changing in ME/CFS and to work out the best ways of ME/CFS people doing petitioning to bring our plight to general public (as we them signing) ..to help bring change. There needs be petitions with the facts on the lack of funding for us .. for each country.
You can also try a Google Site Search
Separate names with a comma.