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NIH MOVING AT BUREAUCRATIC PACE WHILE ME/CFS METABOLOMICS FINDINGS GET HOTTER

Discussion in 'General ME/CFS News' started by Kyla, Oct 12, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Summary/update From microbe discovery project

    http://microbediscovery.org/2016/10...while-mecfs-metabolomics-findings-get-hotter/




    Excerpt:
     
    rosie26, slysaint, Mary and 18 others like this.
  2. Cinders66

    Cinders66 Senior Member

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    I would find it easier to donate via PayPal if that's possible. My donation couldn't complete via iPad (unless I missed something which is quite likely). I agree if the million of patients clubbed in and donated things could start to take off (although I believe in strong pressure sustained on state founders until they step up properly) - the issue is How to reach the millions as opposed to the hundreds who read forums or ME facebook?
     
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  3. Tuha

    Tuha Senior Member

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    I think we have to talk to all patients how important it is to donate. I talked to many patients about this subject and many of them think that their donation will not help or they even didnt think about the possibility to donate to ME research. So everyone from us should try to talk to the patients who he knows, to talk in the ME group which he knows and so on. If everyone will find 2-3 more patients/family/friends members who will donate regulary or sometimes to ME research we will soon multiply the number of donors what could bring significant amount of money for ME research.
     
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  4. Hip

    Hip Senior Member

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    Are there any examples of government research organizations such as the NIH ever performing any groundbreaking research, in any medical area?
     
    *GG* likes this.
  5. RogerBlack

    RogerBlack Senior Member

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    NIH may have been unfortunately crap when it comes to CFS in the past (hopefully somewhat less now).
    For other diseases, they have been considerably more effective, doing lots of basic science that has lead to effective treatments of HIV, HPV, ...
    NIH funds the majority of academic biology work in the USA.
     
    alex3619 and Hip like this.
  6. alex3619

    alex3619 Senior Member

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    ... and the world. There is niche research all over, but across the board the US institutions are the ones doing the most. Let us not forget that a huge part of funding for the Human Genome Project was from an act of Congress. It was also initiated by the US Department of Energy, largely because they wanted to understand the impact of radiation on the genome.

    A fun thing to consider though is that Norway might have eclipsed the US for per capita funding for ME research. Another fun thing to consider is that, of government funding, my state government is a big contributor to our NCNED research, not my federal government.
     
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  7. Hip

    Hip Senior Member

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    That's interesting; so in the US if you are a medical researcher in a university, you would typically apply to the NIH for funding for your studies.


    I tend to have the idea that government-run organizations may not be as good as universities and private institutions for solving complex problems. This is because in a government organization, the responsibility for solving a problem may just be "dumped" on someone or some department, who likely have no real intrinsic interest or passion for the research, but are nevertheless given the responsibility of dealing with it.

    I tend to think you get better quality research when individual researchers are attracted to the problem out of their own interest, and are attracted the intellectual challenge of trying to solve it.

    So if someone like Obama says to the NIH: "go solve ME/CFS" that is all very well; but if nobody in the NIH is interested in ME/CFS, then Obama's injunction just becomes a troublesome and boring burden to the NIH, rather than a fascinating challenge.
     
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  8. BurnA

    BurnA Senior Member

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    Do you think when the US Congress said go solve HIV / AIDS, they worried that the researchers might think it was a troublesome and boring burden ?

    Researchers are researchers because they like researching. It doesn't matter who they work for, what matters is their professionalism.
     
  9. Hip

    Hip Senior Member

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    When a project is organized at a high enough political level and has a high enough political priority, and when there is a lot of funding, it starts to involve numerous universities and corporate organizations, like for example the political drive to put man on the moon in the 1960s. So when the project is of that scale, it goes beyond government.

    If ME/CFS was tackled with a high enough political priority, sure, we would start to see results.



    That is a bit naive. Researchers have their own specific inclinations, interests, knowledge and talents. You won't for example have much success getting an experimental physicist to do theoretical physics research. They won't be able to do it.
     
  10. Barry53

    Barry53 Senior Member

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    But it maybe does depend what the high political priority self interest is? And what researchers they might then choose to help get the results they want?
     
  11. BurnA

    BurnA Senior Member

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    That is a bit condescending.

    Are you going to twist the story to suggest I was implying any researcher could research any subject ? That appears to be what you are doing by saying an experimental physicist would not be able to do theoretical physics research. Is that your argument ? Please clarify, because that is a completely different subject to the one I replied to.
     
  12. Hip

    Hip Senior Member

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    It was not intended to be condescending; but when you wrote "researchers are researchers because they like researching" it does come across as a rather simplistic view of the scientific mind and its nuances. I am sure you don't really think that anyway.
     
    Last edited: Oct 14, 2016
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  13. viggster

    viggster Senior Member

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    Yes, that's how it works. NIH gets about $32 billion a year. Some 15% of that stays at NIH for the research that occurs on campus. The rest gets distributed in thousands of grants to universities & other research institutes.

    The biggest non-governmental biomed research outfit, the Howard Hughes Medical Institute, is interesting in contrast. They operate on a different principle - they fund people, not projects. Scientists who get HHMI funding typically get 5 years of funding to work on whatever they're working on. (But they don't fund clinical work...only bench/lab work.) There's been a push to get NIH to operate this way but it hasn't really gotten far.
     
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  14. BurnA

    BurnA Senior Member

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    The aviator ?
    So could anyone apply to the HHMI - would that be an avenue for ME researchers ?
     
  15. Hip

    Hip Senior Member

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    That's very interesting. So the HHMI are supporting individual scientific talent, and giving the searchers the freedom to follow their own scientific instincts.

    I wonder if there is any analysis of the results of the HHMI versus NIH approaches to funding, to see which yields the best science.
     
  16. Barry53

    Barry53 Senior Member

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    I did not see it as condescending. To me it is no different to the kind of conversation I might have with my colleagues at work, when we try to understand what we are discussing. Lack of body language makes these things difficult sometimes.

    I agree, good researchers do it because it is their passion, and will be highly professional. The trouble is, who they work for can adversely affect things, because they have huge influence, and sometimes it might be quite oblique and insidious.
     
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  17. BurnA

    BurnA Senior Member

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    Well certainly if you call each other naive when you are trying to understand each other then I imagine it is the exact same kind of conversation.
    Do you call each other naive in those circumstances ?
     
  18. Neunistiva

    Neunistiva Senior Member

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    It's the other way around. It is always government funding that drives research and discovery at the forefront.

    Who put the man on moon? Who turned AIDS from deadly to manageable chronic illness? Who discovered the Higgs Boson? Who developed the internet? You will never find private sector at the forefront of discovery. They come in only after they see what it's all about and that there is profit to be made.

    (It's only rare exceptions like Elon Musk, who have enough money not to care about profit any more, that they might want to be pioneers in something.)

    Private institutions go after guaranteed profit.

    I reckon that will happen with ME/CFS as well. Once public funding paves the way, pharma is going to get on board. But they are not going to research ME/CFS while they are not sure there is any payoff there.
     
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  19. Barry53

    Barry53 Senior Member

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    Actually we have very positive and fruitful discussions. It's just that we don't worry when someone says such things (assuming they don't say it in a way that is clearly offensive), because it is rarely intended as a personal slight, and recognised as not being so. If a person said this, it would just be them saying they think the other person is over simplifying an issue, and maybe missing something. That is not a personal slight, it is just an observation that may be valid; it is for everyone to then decide if they agree or disagree, and move the debate forwards.

    With my work, as design engineers, we mutually strive for the best solutions we can come up with. Which involves the to-ing and fro-ing of different opinions and ideas. Only by openly and frankly discussing such things do we have any chance of homing in on good answers. Such discussions can often get quite animated, moderately heated even. But we all understand what is going on, and it's just an integral - important even - part of the process.

    Here in PR we have to be able to discuss the difficult issues facing ME/CFS sufferers. What counts is cutting to the chase and trying to make the world a better place if possible, and that's not always easy.

    It depends how something is said of course, and in a forum the personal interaction is not there. I guess it just emphasises that in forums we all need to be aware that it's easier misunderstand each other.

    Do I ever get annoyed with anyone at work? Yes of course I do, but rarely. Either I'm having a bad/sensitive day, and/or someone has over-stepped the line.
     
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  20. Hip

    Hip Senior Member

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    I was not referring to government funding, but rather government institutions. Universities are in part government funded, but they are not government institutions.
     
    Last edited: Oct 14, 2016

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