Great Washington Post Article on NIH Research Funding Allocation

[Never Give Up]

http://www.washingtonpost.com/blogs...harm-dont-always-get-the-most-research-money/

 

[TiredSam]

“The thing I found fascinating, and this still appears to be the case, is we tend to underfund things where we blame the victim,” Johnston said.

Which is another reason why psychobabblers and the myths they perpetuate are so harmful to us.

 

[SilverbladeTE]

Which is another reason why psychobabblers and the myths they perpetuate are so harmful to us.

Which is why they should be put in the dock, tried and sentenced to LONG periods in jail
If a doctor makes an honest mistake, and it's a terribly complex and harrowing arena to work in, it's understandable

When a doctor refuses to listen to patients, actively prevents them getting treatment, has their children taken form them, has them wrongfully locked up in a mental asylum, when he does not a thing to help but EVERYTHING to make their lives worse, to the extent of even directly causing death, and they will all suffer and die when they shouldn't...
and that's for 17 million people across the globe.
Then you weld the bastard in a cell for life.

Refusal to accept this kind of thing to deal with it as it should be, has caused constant MASSIVE numbers of deaths and even huger numbers of ruined lives, in many ways from many causes.
For example, the tobacco companies. If you trigger a war off one terrorist atrocity of 3000 murders, why weren't the tobacco CEOs hit by SEALs or the like for killing millions of people?
think about it.
All of these problems, and there are a great deal, not just ME/CFS, add up to a colossal unseen catastrophe we have come to ignore, expect, to know nothing will be done. And so they pile up more and more....

And in our bailiwick, never forget the two biggest mass murders in history were both English GPs.
And both were only discovered by the actions of victims' friends and families who refused to accept the official horseshit. The "professional classes", the Establishment, protect themselves here, as can be seen by clear proof in Dr John Bodkin Adams' case when they "fixed" the trial for him.

Oh I'm sure lot of the ones who've screwed us up aren't as malevolent as that, probably started out with good intentions, but they pave the road to Hell...the ends justifies the means....if the square peg won't fit the round hole, the peg is at fault! (not the one holding it, in their minds)

 

[Simon]

FWIW, here's mecfs, assuming mecfs has a similar disease burden to MS, and a NIH spend of $5m in 2010. Note that the graph uses a log scale (each unit is a ten-fold difference), which tends to shrink the differences between points. mecfs is definitely an outlier.

The Washington Post starts with this example

Two diseases with a similar health burden, breast cancer and chronic liver disease, received wildly different levels of support: $763 million for the cancer best known for iconic pink ribbon awareness efforts, versus $284 million for a disease commonly caused by alcohol abuse.

That might be shocking - a 3x discrepancy - but for mecfs the situation is even worse, we get about 25x less than rheumatoid arthritis, 50x less than MS (someone might want to check my figures)

[NIH Assoc Director for Science Policy, Dr Carrie[] Wolinetz said this is the first time that NIH has put out its own analysis of the breakdown of research funding versus burden of disease, a signal of transparency that many outside researchers applauded.

Which suggests that the NIH are beginning to take this issue more seriously. Maybe they will be more sympathetic to mecfs as a result? I don't know, but that's exactly the case that Brian Vastag was making in his appeal to NIH director Francis Collins - this disease is hopelessly underfunded when you look at the disease burdern (and the cost to the economy).

Oh,

Thomas Insel, the director of the [NIH mental health] institute, said he found the analysis [on disease burden] illuminating. It led to an increased focus on suicide and eating disorders.

"When we did it internally, it became really clear that an area that was really underfunded was suicide research," Insel said. "I just really didn’t realize that. I thought we had a lot more invested there. I should have known. I should have figured it out some other way, but it wasn’t until I saw the graph that I realize that was an area we needed to build."

Food for thought.

 

[Sasha]

I got a factor of 60 last time I did the MS vs ME calculation: $5m vs $115m annually, 4 MS patients to every 10 ME patients.

Given that the IOM report suggests a higher prevalence of ME that factor of 60 might be more like 100 or 150.

 

[Simon]

I got a factor of 60 last time I did the MS vs ME calculation: $5m vs $115m annually, 4 MS patients to every 10 ME patients.

Given that the IOM report suggests a higher prevalence of ME that factor of 60 might be more like 100 or 150.

The "DALY" disease burden figures in that graph are per disease overall (not per patient), factoring in prevalence as well as 'lost years' lost through both disability and premature death. Hence my 25x versus MS. Maybe MS isn't the ideal comparison, but it's one I've seen cited before (and couldn't find any data for rheumatoid arthritis).

 

[Sasha]

Cort is being a bit cryptic in his new blog post about why he thinks we don't get funding (I can only assume the answer is coming up in a future post!):

http://www.cortjohnson.org/blog/201...-syndrome-and-fibromaylgia-get-lousy-funding/

 

[snowathlete]

I like the graph. Something visual like this can sometimes have a greater success in getting through to people where words somehow get filtered out, losing their impact. Perhaps a "letter" campaign focusing on a visual graph like this might be effective where traditional letters have failed...

 

[caledonia]

I've looked at the NIH funding chart and it seems that the squeaky wheel gets the grease (or the funding). It's not based on how many people have a disease or how serious it is.