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California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the...
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Article: The NIH on ME/CFS in 2012: Pt II the STUDIES!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 2, 2012.

  1. Snow Leopard

    Snow Leopard Senior Member

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    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...
  2. Cort

    Cort Phoenix Rising Founder

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    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.
  3. ixchelkali

    ixchelkali Senior Member

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    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?
  4. Ember

    Ember Senior Member

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    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.
  5. Cort

    Cort Phoenix Rising Founder

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    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.
  6. Cort

    Cort Phoenix Rising Founder

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    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.
  7. Ember

    Ember Senior Member

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    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?

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