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NIH rejecting ME/CFS research applications 'because they're not good enough' - help me find quote!

Discussion in 'General ME/CFS Discussion' started by Sasha, Mar 26, 2014.

  1. Sasha

    Sasha Fine, thank you

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    A couple of CFSACs ago - that awful one where our patient rep got so distressed about the way she felt threatened - I think the NIH rep (?) said that ME/CFS biomedical research applications were getting turned down because of their poor quality (!).

    I think I also heard someone at that meeting (Dr Fletcher?) or elsewhere (Dr Klimas?) say that lots of their research in their other disease areas (such as HIV) get funded by the NIH - it's only when they apply for ME/CFS grants that they get rejected.

    Can anyone direct me to quotes or to Youtube footage (preferably telling me roughly when it comes up)?

    Thanks! :)
    vli likes this.
  2. vli

    vli

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    Sasha, I'm not aware of this but I'll go through the old CFSACs and try to find them for you. (I will start from - 2011?)
  3. Sasha

    Sasha Fine, thank you

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    Thanks! Pretty sure this came up at the Spring 2013 CFSAC.

    I wonder if anyone does transcripts of them? :eek: Then it would be a matter of just searching through the doc for 'NIH'.

    @jspotila - does this ring any bells with you? If you're seeing this after 24 hours, forget I asked - it's for a piece of writing and I don't have long to do it.
  4. Nielk

    Nielk

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    Minutes of May 2013 meeting where NIH gives their update: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsacmay23_final_508.pdf

    Dr. Mayer of the NIH - quotes from May2013 CFSAC meeting:

    In order to increase the amount of funds that are spent on ME/CFS research, there needs to be
    an increase in the number of applications sent into NIH with well-crafted hypotheses, thoughtful
    and diligent experimental design, and careful attention to the science behind the application
    and the translational impact of the experimental outcome to the clinical realm.

    and

    A request for applications (RFA) is a type of mechanism that’s used at NIH that has a specific
    amount of money set for that topic area. Even though an RFA has an amount of money set
    aside, that does not mean that every single application submitted will be paid. Every application
    has to go through scientific or technical merit review and every application is scored for its
    scientific merit, for its procedural aspects, and for its approach and its relevance to the field.

    In answer to a question -

    Dr. Maier: Yes. Luckily, the money does not go back to the Treasury. The money would go toward
    other research at the institutes and centers that contributed. When you put in an RFA for a specific
    topic area and you assign it a certain amount of money, if you don’t get sufficient applications submitted 9

    and/or the applications that were submitted do not score well in a scientific or merit review, then that
    indicates that there are not enough people in field, the topic is not interesting, or the people did not ask
    the right questions. You can imagine thinking as a funding agency: “We set aside $4 million and we only
    spent $2.6 million, and it was well spent on those projects, but why weren’t there more projects? Why
    didn’t they score well? Should we really invest again in this particular topic area?” That doesn’t mean
    that another topic area might not be appropriate to invest in. It just means that for that particular
    narrow topic, it wasn’t, at that point, the right one.

    (hope this helps)






    Minutes of May 2013 meeting where NIH gives their update: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsacmay23_final_508.pdf

    Dr. Mayer of the NIH - quotes from May2013 CFSAC meeting:

    In order to increase the amount of funds that are spent on ME/CFS research, there needs to be
    an increase in the number of applications sent into NIH with well-crafted hypotheses, thoughtful
    and diligent experimental design, and careful attention to the science behind the application
    and the translational impact of the experimental outcome to the clinical realm.

    and

    A request for applications (RFA) is a type of mechanism that’s used at NIH that has a specific
    amount of money set for that topic area. Even though an RFA has an amount of money set
    aside, that does not mean that every single application submitted will be paid. Every application
    has to go through scientific or technical merit review and every application is scored for its
    scientific merit, for its procedural aspects, and for its approach and its relevance to the field.

    In answer to a question -

    Dr. Maier: Yes. Luckily, the money does not go back to the Treasury. The money would go toward
    other research at the institutes and centers that contributed. When you put in an RFA for a specific
    topic area and you assign it a certain amount of money, if you don’t get sufficient applications submitted 9

    and/or the applications that were submitted do not score well in a scientific or merit review, then that
    indicates that there are not enough people in field, the topic is not interesting, or the people did not ask
    the right questions. You can imagine thinking as a funding agency: “We set aside $4 million and we only
    spent $2.6 million, and it was well spent on those projects, but why weren’t there more projects? Why
    didn’t they score well? Should we really invest again in this particular topic area?” That doesn’t mean
    that another topic area might not be appropriate to invest in. It just means that for that particular
    narrow topic, it wasn’t, at that point, the right one.

    Dr. Casillas: Is there any priority or preference in regard to which agencies are funding this project or

    Minutes of May 2013 meeting where NIH gives their update: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsacmay23_final_508.pdf

    Dr. Mayer of the NIH - quotes from May2013 CFSAC meeting:

    In order to increase the amount of funds that are spent on ME/CFS research, there needs to be
    an increase in the number of applications sent into NIH with well-crafted hypotheses, thoughtful
    and diligent experimental design, and careful attention to the science behind the application
    and the translational impact of the experimental outcome to the clinical realm.

    and

    A request for applications (RFA) is a type of mechanism that’s used at NIH that has a specific
    amount of money set for that topic area. Even though an RFA has an amount of money set
    aside, that does not mean that every single application submitted will be paid. Every application
    has to go through scientific or technical merit review and every application is scored for its
    scientific merit, for its procedural aspects, and for its approach and its relevance to the field.

    In answer to a question -

    Dr. Maier: Yes. Luckily, the money does not go back to the Treasury. The money would go toward
    other research at the institutes and centers that contributed. When you put in an RFA for a specific
    topic area and you assign it a certain amount of money, if you don’t get sufficient applications submitted 9

    and/or the applications that were submitted do not score well in a scientific or merit review, then that
    indicates that there are not enough people in field, the topic is not interesting, or the people did not ask
    the right questions. You can imagine thinking as a funding agency: “We set aside $4 million and we only
    spent $2.6 million, and it was well spent on those projects, but why weren’t there more projects? Why
    didn’t they score well? Should we really invest again in this particular topic area?” That doesn’t mean
    that another topic area might not be appropriate to invest in. It just means that for that particular
    narrow topic, it wasn’t, at that point, the right one.

    Dr. Casillas: Is there any priority or preference in regard to which agencies are funding this project or

    Minutes of May 2013 meeting where NIH gives their update: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsacmay23_final_508.pdf

    Dr. Mayer of the NIH - quotes from May2013 CFSAC meeting:

    In order to increase the amount of funds that are spent on ME/CFS research, there needs to be
    an increase in the number of applications sent into NIH with well-crafted hypotheses, thoughtful
    and diligent experimental design, and careful attention to the science behind the application
    and the translational impact of the experimental outcome to the clinical realm.

    and

    A request for applications (RFA) is a type of mechanism that’s used at NIH that has a specific
    amount of money set for that topic area. Even though an RFA has an amount of money set
    aside, that does not mean that every single application submitted will be paid. Every application
    has to go through scientific or technical merit review and every application is scored for its
    scientific merit, for its procedural aspects, and for its approach and its relevance to the field.

    In answer to a question -

    Dr. Maier: Yes. Luckily, the money does not go back to the Treasury. The money would go toward
    other research at the institutes and centers that contributed. When you put in an RFA for a specific
    topic area and you assign it a certain amount of money, if you don’t get sufficient applications submitted 9

    and/or the applications that were submitted do not score well in a scientific or merit review, then that
    indicates that there are not enough people in field, the topic is not interesting, or the people did not ask
    the right questions. You can imagine thinking as a funding agency: “We set aside $4 million and we only
    spent $2.6 million, and it was well spent on those projects, but why weren’t there more projects? Why
    didn’t they score well? Should we really invest again in this particular topic area?” That doesn’t mean
    that another topic area might not be appropriate to invest in. It just means that for that particular
    narrow topic, it wasn’t, at that point, the right one.

    Dr. Casillas: Is there any priority or preference in regard to which agencies are funding this project or

    Minutes of May 2013 meeting where NIH gives their update: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsacmay23_final_508.pdf

    Dr. Mayer of the NIH - quotes from May2013 CFSAC meeting:

    In order to increase the amount of funds that are spent on ME/CFS research, there needs to be
    an increase in the number of applications sent into NIH with well-crafted hypotheses, thoughtful
    and diligent experimental design, and careful attention to the science behind the application
    and the translational impact of the experimental outcome to the clinical realm.

    and

    A request for applications (RFA) is a type of mechanism that’s used at NIH that has a specific
    amount of money set for that topic area. Even though an RFA has an amount of money set
    aside, that does not mean that every single application submitted will be paid. Every application
    has to go through scientific or technical merit review and every application is scored for its
    scientific merit, for its procedural aspects, and for its approach and its relevance to the field.

    In answer to a question -

    Dr. Maier: Yes. Luckily, the money does not go back to the Treasury. The money would go toward
    other research at the institutes and centers that contributed. When you put in an RFA for a specific
    topic area and you assign it a certain amount of money, if you don’t get sufficient applications submitted 9

    and/or the applications that were submitted do not score well in a scientific or merit review, then that
    indicates that there are not enough people in field, the topic is not interesting, or the people did not ask
    the right questions. You can imagine thinking as a funding agency: “We set aside $4 million and we only
    spent $2.6 million, and it was well spent on those projects, but why weren’t there more projects? Why
    didn’t they score well? Should we really invest again in this particular topic area?” That doesn’t mean
    that another topic area might not be appropriate to invest in. It just means that for that particular
    narrow topic, it wasn’t, at that point, the right one.

    Dr. Casillas: Is there any priority or preference in regard to which agencies are funding this project or
    Sasha and Valentijn like this.
  5. vli

    vli

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    Sasha likes this.
  6. Sasha

    Sasha Fine, thank you

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    Thanks, @Neilk - that's the ticket!

    Thanks anyway, @vli!

    :thumbsup:
    Nielk likes this.
  7. acer2000

    acer2000 Senior Member

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    I think I remember Dr. Lipkin commenting on how they didn't approve his first grant proposal for the micro biome study at the Stanford meeting. This seems like a big contradiction given that Columbia probably is pretty good at writing grants and CFSAC stated rational of "not funding because they don't get any good grant proposals". Not too sure of the details or current status, however.
    Last edited: Mar 27, 2014
    Sasha likes this.

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