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Article: The NIH on ME/CFS in 2012: Pt II the STUDIES!

I think there have multiple focuses in CFS ranging from the HPA axis to cytokines to EBV to the sympathetic nervous system - to the brain.....

I think I over-focused on your use of the word 'anxiety' and by 'they' I was also including non-NIH grants.

There have indeed been a few avenues explored over the years but the one that keeps showing up is the HPA axis - and this is the one that psychs love to use to explain how the condition is psychosomatic. Personally I think the HPA axis observations are non specific and don't tell us much that is unique about this disorder.

The information you provided on current NIH funding is interesting and it will be extremely disappointing if we see a decline in funding!

One of the keys is intermediate funding for pilot studies - the NIH (and the NHMRC in Australia) tend to only want to fund larger scale 'sure thing' type research. This leaves a big hole in terms of funding for the more speculative research which needs to be done first. I know the CAA (and the 'Mason Memorial Foundation' in Australia) focuses on this and has had some success too, but their funding is not enough...
 
I think I over-focused on your use of the word 'anxiety' and by 'they' I was also including non-NIH grants.

There have indeed been a few avenues explored over the years but the one that keeps showing up is the HPA axis - and this is the one that psychs love to use to explain how the condition is psychosomatic. Personally I think the HPA axis observations are non specific and don't tell us much that is unique about this disorder.

The information you provided on current NIH funding is interesting and it will be extremely disappointing if we see a decline in funding!

One of the keys is intermediate funding for pilot studies - the NIH (and the NHMRC in Australia) tend to only want to fund larger scale 'sure thing' type research. This leaves a big hole in terms of funding for the more speculative research which needs to be done first. I know the CAA (and the 'Mason Memorial Foundation' in Australia) focuses on this and has had some success too, but their funding is not enough...

Thanks Snow Leopard. I mostly agree about the HPA axis (although I am holding open the possibility that something more may show up in the future) - the findings are not compelling enough to suggest that the HPA axis is 'it'. I think the research community has largely agreed; a couple of years ago we seemed to be deluged with HPA axis studies - one cortisol study after another - but I think their time has largely passed and researchers are moving onto other things..

Yes, I can see the potential for a big drop in NIH funding -the next article in this series is VERY interesting. I was kind of shocked at how things turned out - if I got everything right. Those pilot studies are incredibly important - the CAA, PHANU, Simarron and others are all engaged in them with hopes of getting bigger grants.
 
CORT said:
I've always been a bit surprised at what appear to be ad hoc pronouncements by agency officials. I actually question whether they take the time to really review the stats.

When Cheryl Kitt was asked whether the reported rate of applications represented a static number, here's how she replied:

It's pretty static. It's been this little roller coaster. I've looked at it for the past ten years actually. I just wanted to report on the more recent ones because there have been changes in peer review over the last two years. The applications got smaller, the criteria are somewhat the same, but they're all scored....The relative number of applications hasn't changed because of that. It's just the way it is.

Nancy Klimas suggested ways to increase the number of applications, but nobody at the CFSAC meeting challenged the version of events they were given. Based on your FOIA (which confuses me), do you think the CFSAC exchange was misleading? If you get a chance to listen, it starts at about 1:47 http://www.youtube.com/watch?v=nf2yOxf74bE.
 
Thank you for this review, Cort. Are all of the studies you mentioned included as ME/CFS research in the NIH budget? Even the ones that aren't studying ME/CFS patients?

Yes, they are.....In fact the 2006 RFA funded two or three studies that had nothing directly to do with CFS. That's kind of par for the course.
 
When Cheryl Kitt was asked whether the reported rate of applications represented a static number, here's how she replied:



Nancy Klimas suggested ways to increase the number of applications, but nobody at the CFSAC meeting challenged the version of events they were given. Based on your FOIA (which confuses me), do you think the CFSAC exchange was misleading? If you get a chance to listen, it starts at about 1:47 http://www.youtube.com/watch?v=nf2yOxf74bE.

It sounds like she was talking about data that occurred after the FOIA I did - so I'm imagine its accurate. To her credit its good that she shows up at these meeting. I don't think she's an ex-officio. Her statement certainly demonstrates the need for the NIH to do something to boost interest in this disorder. They've talking about that for over 15 years...in fact they created the CFS SEP review panel specifically to boost application rates. The only effective thing they've done has been the funded 2006 RFA grant - that brought in alot of applications - but and it was effective - but they are very reluctant to actually spend money on CFS.
 
It sounds like she was talking about data that occurred after the FOIA I did - so I'm imagine its accurate.

What confuses me in relation to your FOIA is Cheryl Kipp's claim that the situation has remained pretty static over the past ten years. Isn't she saying that, over that time, the success rates have been really quite high in the CFS study section because the application numbers have been so low?