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NIH rejection of Lipkin funding request

Discussion in 'General ME/CFS Discussion' started by Ren, Apr 2, 2014.

  1. Ren

    Ren Primum Non Nocere

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    Hello -

    I believe someone wrote that Cort Johnson (sp?) wrote that NIH rejected Lipkin's funding request for the Discovery project bc the NIH grant reviewer(s) defined CFS/ME as psychosomatic. (I'm having trouble locating this statement again though.)

    I'd like to know if the names of the individuals who made this decision are public record.

    Thank you!
     
  2. Sasha

    Sasha Fine, thank you

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    No they're not - even the disciplines they represent are kept secret:

    http://www.occupycfs.com/2013/06/06/no-facts-for-you/
     
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  3. Ren

    Ren Primum Non Nocere

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    @Sasha, thank you.

    What an absolute joke. All I can envision are the upright pigs from Animal Farm... Instead of badges, such "professionals" should be issued snouts.
     
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  4. Sasha

    Sasha Fine, thank you

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    It's not pretty, @Ren.
     
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  5. alex3619

    alex3619 Senior Member

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    Could we have a link to where this was said? Does anyone have any supporting documentation on this?
     
  6. Sasha

    Sasha Fine, thank you

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    Cort tweeted it from the Stanford Conference - see 19 March, 6:02 pm. Sorry, I don't know how to give the specific link:

    https://twitter.com/CortJohnson
     
    Ren likes this.
  7. alex3619

    alex3619 Senior Member

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    Ren and Sasha like this.
  8. lnester7

    lnester7 Seven

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    Let us know what we can do, maybe somebody can get lawayers or patient reps on this one.
     
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  9. alex3619

    alex3619 Senior Member

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    I think a petition/letter of reprimand to the NIH is a possibility. If they use clearly biased reviewers, then they deserve reprimand. However we need solid confirmation of what happened.
     
    Last edited: Apr 5, 2014
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  10. RL_sparky

    RL_sparky

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    I think it's time for the community to put pressure on Director Collins and the NIH for not only under funding us but also for not approving the Lipkin Microbiome Study.

    Dr. Lipkin had this to say about his study, " However, identifying patients who have microbiome-related immune disturbances within the larger population of individuals with ME/CFS is a critical first step toward improved understanding and effective treatment of the disease"
    Even though I support the effort by the patient population to raise funds for this study and have contributed and have asked family and friends, I still think it should be the governments responsibility to fund this.
    I have been sending emails everyday to the Dr. Collins stating the urgent need for this study to be re-evaluated and approved!

    http://www.microbediscovery.org/the-study/
     
    Last edited: Apr 2, 2014
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  11. lnester7

    lnester7 Seven

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    I think we should DIG and DIG and DIG and make an example of whomever denied this claim. Expose the issues and bring every media outlet we can find, HEAT!!!!!

    If we show we WILL DIG and expose they will think twice to keep abusing us / being miss informed.

    Does anybody know which ME organization deal with legal / government issues???? I want to know what is the plan on this one.
     
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  12. RL_sparky

    RL_sparky

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    We all need to get involved with this project:


    http://www.occupycfs.com/2014/04/02/congress-we-need-an-rfa/

    "I am very happy to report that an effort is underway to secure Congressional support for a $7-10 million RFA for ME/CFS funding at NIH. And there is something YOU can do to help!"

    "Representative Zoe Lofgren (D-CA) and 10 of her colleagues have signed a letter to Dr. Francis Collins, Director of NIH, asking him to follow the recommendation of the CFS Advisory Committee and allocate $7 to 10 million for an RFA. This would be money set aside for ME/CFS research (currently no money is guaranteed to ME/CFS). I’ve posted a copy of the letter for you to read and take to your own Congressman/woman".

    What you can do ...
     
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  13. Ren

    Ren Primum Non Nocere

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    I don't (yet) understand how the NIH grant process works (doesn't work) and how CFS/ME specifically fits into this equation.

    I wanted to mention though that Jennie Spotila explains some important issues related to this in her post, "“No Facts for YOU!” (6 June 2013). This is the info/link Sasha shared in post 2 above, http://www.occupycfs.com/2013/06/06/no-facts-for-you/ (and why my blood boiled a bit, and I made the snout comment - should it have seemed harsh :devil:).

    And I'll just add that I asked Jennie about grants/reviewers recently, and so she responded with a bit of an update of her work with this (which seems extensive). Here's the link for that info: http://www.occupycfs.com/2014/03/31/2013-nih-spending-on-cfs-studies/#comments // My question was 19, and Jennie's response is post 20, I believe. To my understanding, she's been working on this (grant issues and transparency) and will soon have new info to share. Perhaps those interested in backing this issue should throw their weight behind her?

    But that's not my place to say of course! I'm just sharing one tiny thing I happened upon. I certainly don't know who's doing what or who wants or needs help in doing it, etc. ;)

    Also re post 12, what is RFA please?

    And how do we ensure/safeguard that - should such funding pass - it's not going to further bury CFS/ME in garbage psych defemation?
     
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  14. Nielk

    Nielk

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    RFA stands for Request for Application -

    This PR article by Cort talks about it-

    http://phoenixrising.me/archives/6984
     
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  15. Ren

    Ren Primum Non Nocere

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    Okay - Thank you!
     
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  16. Snow Leopard

    Snow Leopard Senior Member

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    This is upsetting. The NIH keeps the excuse (for not funding CFS research properly) that there are not sufficient applications of quality and merit. But when they do have such submissions (eg Ian Lipkin's proposal), they reject it anyway, leading most researchers not to bother - it takes them a lot of work to make a proposal, so most don't bother if they know that even good proposals get knocked back because the NIH doesn't care about CFS.
     
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  17. Sean

    Sean Senior Member

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    Very conveniently circular, isn't it. Persistently fail to fund high quality biophysical studies, then act all surprised and disappointed that high quality biophysical researchers stop wasting their time and energy submitting applications for funds, and then use the inevitable subsequent lack of good biophysical data to claim it therefore must be a psychological disorder.

    If Lipkin is not a high quality researcher, then who the heck is?

    A very sick joke indeed.
     
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  18. vli

    vli

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  19. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Why do they hate us so much? :(
     
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  20. vli

    vli

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    They don't hate us as such--they just don't care.
     
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