The NIH On the Clock Pt. III: It’s Raining Money

March 24, 2009

Posted by Cort Johnson

rainingmoneyThat’s right – in the midst of the greatest economic contraction since the depression the NIH has, all of sudden, found itself in the greatest single expansion in its history. How and why demonstrates how much influence one Senator can have. Desperate to get Arlen Spectors vote on the stimulus package, the Obama administion acceded to a 30% increase in the NIH’s already enormous budget. This year the NIH will have to find a way to spend 10 billion dollars more than it did last.

The question for us is, of course, is whether any of that money will trickle down to chronic fatigue syndrome (ME/CFS) projects. The NIH’s ME/CFS research program – always paltry – has declined by 50% over the past five years. Eleanor Hanna, the head of the program (it’s sole employee actually) has repeatedly cited tight budgets at the NIH as a reason for the programs inability to progress.

In the seven years the program has been housed at the Office for Research Into Women’s Health, the three federally funded research centers were closed, funding has dropped dramatically and the program has managed to produce only one major initiative; a grant program three years ago that underperformed severely.

So the NIH has alot of catching up to do. Now that it’s raining money will the institution finally get that spending $4/year on a disease that costs the average family $25,000 is ludicrous? All the signs are that the hole for ME/CFS is too deep. This stimulus package – designed to get money quickly into the system – will reward disease’s that are already doing well – that have projects and studies lined up and waiting. Kim McCleary of the CFIDS Association of America pointed out that there’s not much in the pipeline for ME/CFS for the NIH to reward – and the pipeline is where the money is going to go. The chronic fatigue syndrome program at the NIH will lose out at this huge opportunity simply because it’s been whittled down too far to be able to take advantage of it.

Few ME/CFS researchers are hammering on the NIH’s door for funding. They’ve been burned too many times to spend months producing a several hundred page application that’s probably going to be rejected anyway. If the research centers were still in existence they would certainly been in a position to take advantage of this opportunity. If some Centers of Excellence had been funded they could have taken advantage of it. But the first avenue was closed and the second has never opened.

There are some possibilities and one success thus far. Dr. Mikovits reported that a large grant that the Whittemore-Peterson Neuroimmune Institute had tried twice to get through was picked up. It’s very possible that Dr. Baraniuk has something in hand to try and the Klimas/FLetcher team, already well funded by the NIH, is nothing if not busy. The recipients of the CFIDS Association of America’s Research Initiative are also reportedly scurrying to get some proposals in under the deadline.

Will ME/CFS be left high and dry during the greatest expansion in NIH’s history? It doesn’t appear that its going to finally rain money on chronic fatigue syndrome program but it’s possible that some drops will fall on some very parched mouths. One hopes at least that will happen. We’ll know shortly.

9 comments

{ 9 comments… read them below or add one }

greenwords March 24, 2009 at 6:03 pm

I hope there’s an absolute downpour. The drought really needs to break, and soon.

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cort March 24, 2009 at 8:09 pm

I agree – its unconscionable that as estimates of this disease have increased and the economic costs of the disease have become clear – spending on research has decreased rather dramatically. There’s just very little support for us at the NIH – we need to hold them more accountable.

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MeZombie March 24, 2009 at 7:56 pm

Too bad we aren’t autistic. The NIH announced today it will be spending $60 million of its recovery funds on autism research. Autism is a big deal in the Obama administration. It’s the only disease mentioned on the White House website (http://www.whitehouse.gov/agenda/disabilities/).

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cort March 24, 2009 at 8:13 pm

Parents of autistic kids have done a great job at putting pressure on the federal government to ramp up funding. A 60 million dollar INCREASE! 60 million dollar is what the NIH will spend on ME/CFS over the next 15 YEARS at this rate. It’s ugly!

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MeZombie March 25, 2009 at 1:59 pm

Cort –Why is my earlier comment (which you addressed) “awaiting moderation”?

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cort March 25, 2009 at 7:28 pm

Sorry – it was because I didn’t know how to do the system – I thought I had approved it. Thanks for the comment!

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lucy April 26, 2009 at 9:58 am

cort (or anyone)

what is the latest news from Baraniuk’s research?

he is my hero and is the kindest doctor i have ever had the pleasure of subjecting myself to a spinal tap for ;-)

no, seriously, i really believe Dr. Baraniuk and his collegues (Dr. Ravindran et al) are onto something important and i can’t wait to learn more about his findings…

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cort April 26, 2009 at 5:31 pm

Hey I agree – he is the kindest doctor that I have ever had the pleasure of getting spinal tapped by as well. He and Dr. Ravindran are a great team that’s for sure. I actually have a newsletter on them just waiting to go out. I think he’s onto something as well. Didn’t see them at the Reno Conference unfortunately. Glad to hear you had a good experience with them.

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lucy April 26, 2009 at 7:50 pm

thank you cort – i look forward to your newsletter. i had a great experience in that i got to learn so much – even tho i was one of the unlucky to have the spinal headache after- it was worth it to know i was helping the cause. and dr. b and dr. r are truly sweet wonderful people who really care. i had been a patient of his before this research study, so i knew he would take great care of me and they did.

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