The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Cort interview Vicky Whittemore for NIH update (31 Aug 2016)

Discussion in 'General ME/CFS News' started by Sasha, Aug 31, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Very interesting article:

    http://www.healthrising.org/blog/2016/08/30/nih-chronic-fatigue-syndrome-change-coming/

    In particular, what we've all been wondering:

    Lots of interesting stuff in there - well worth a read.
     
  2. dreampop

    dreampop Senior Member

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    Honestly, off the top of my head I know the NIH has said it tries to account for private spending (or it is a stated mission - whether or not its followed idk) when making funding decision at both the broad levels and the study application levels. This is an important mission because obviously some diseases will randomly be more popular, like, say randomly having a Michael J. Fox get sick or be more attractive to private spending for superficial reasons. If the NIH seeks to treat national health issues, than it must offset the popular diseases spending that may not reflect actual national suffering. So like breast cancer vs some random, worse cancer.

    I don't know whether she is not aware of the logic or is unaware of the NIH stated mission but I find that comment particularly irksome. Actually, less private spending = more public spending for a given disease, if all else is equal (demographics, suffering, grant requests, etc.)

    Anyway, the consortium seems like a bad idea if its going to be really, really poorly funded and I have no reason to think otherwise. Again, blaming heterogeneity for intentional, internal bias within the NIH.

    CFS study sizes are small because funding is small, I don't understand that comment either.

    As far as I can tell the working group has, and will continue to be, a functionally useless body that is there so they can say they have a working group.
     
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  3. dreampop

    dreampop Senior Member

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    This is just one example, there are lot more that are specific about private funding influencing on NIH spending but its such a pain in the ass to navigate the official documents and NIH website it'll take me weeks to dig up again but I didn't want to leave without a citation.
     
    Last edited by a moderator: Aug 31, 2016
  4. Tuha

    Tuha Senior Member

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    I think we see here always some excuses why it´s not possible. But if you really want to change the situation you will find the way. Look at OMF - with the budget of around 2-3 millions they are staring to move ME research to hire a team of top researchers, to attract privat donors. ,.... so if NIH dont have competences to do it, just give Davis, Lipkin money and they will create ME research.

    We hear some months ago that thre will be RAF for ME research in jun or july. Now we have september and there is still nothing.
     
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