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NIH Request For Information: Soliciting Input on How Best to Advance ME/CFS research

Discussion in 'General ME/CFS News' started by Andy, Mar 15, 2019 at 6:37 PM.

  1. Andy

    Andy Committee Member

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    https://grants.nih.gov/grants/guide/notice-files/NOT-NS-19-045.html

    Hopefully we will be able to submit something on behalf of the forum?
     
  2. duncan

    duncan Senior Member (Voting Rights)

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    They are doing the same thing for Lyme. I filled it out for Lyme and other TBDs yesterday. I'm not sure how I feel about that.
     
  3. strategist

    strategist Senior Member (Voting Rights)

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    They say Organizations are strongly encouraged to submit a single response that reflects the views of their organization and membership as a whole.
     
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  4. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Interesting. I suppose that if we are to submit an S4ME response, we should first discuss the main points we want to emphasize. For me personally, for example, that would be:

    1) RFA's or other research funds dedicated specifically to ME/CFS to attract researchers into the field.

    2) The use of stricter diagnostic criteria that require the presence of post-exertional malaise.

    3) More replication, more comparisons with related conditions instead of healthy controls.

    4) Training of ME/CFS specialists, because the old ones are reaching retirement ages and we need them to make reliable diagnoses in research.

    5) etc.


    We should probably try to emphasize points that will not be made by other interest groups (such as a warning against the use of the Chalder Fatigue Scale for example) and will be overlooked unless we make the case.
     
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  5. strategist

    strategist Senior Member (Voting Rights)

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    It's a perfect opportunity to tell them they should do the actigraphy study @Jonathan Edwards wants to see.
     
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  6. Denise

    Denise Senior Member (Voting Rights)

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    I think ensuring points are covered is very important.

    I also think there is value in NIH hearing the important points in several submissions as it shows support for those points among the community.

    Possible point to consider - not dwelling on warnings. Readers may end up looking into why the warning but their bias may lead them to the wrong position.

    I suggest instead focusing on suggestions surrounding biomedical research that will actually produce meaningful results. (In other words - point them in the direction we want them to go - don't point them to the wrong stuff.)
     
  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    Ensure that training means people are properly informed of the reasons for patient concern about PACE/CBT/GET/etc so that there isn't a continuation of old prejudices about patients' views.
     
    Last edited: Mar 18, 2019 at 5:46 PM
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  8. Kitty

    Kitty Established Member

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    Ensure that null results are published?
     
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  9. Londinium

    Londinium Senior Member (Voting Rights)

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    This, this and this again. I'm not wedded to a particular set of diagnostic criteria but the presence of PEM is an absolute must.

    Only thing I'd add is try and make it a requirement for funding that sub-group analyses are specified openly before data collection.
     
  10. Kitty

    Kitty Established Member

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    Forgive me if this isn't part of the NIH's remit (I'm from the UK), but are there training/development opportunities here too?

    For instance, funding organisations often seem to spread their hands and say they'd like to receive more high-quality applications for research money, suggesting there's a gap there...are there ideas about how to bridge this?

    We also need to know much more about how many people get ME. Could the NIH develop a surveillance/reporting programme of some kind?

    Also, is there/should there be a US biobank?
     
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  11. Alvin

    Alvin Senior Member (Voting Rights)

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    Last edited: Mar 16, 2019 at 9:18 PM
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  12. Andy

    Andy Committee Member

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    Valid point, the answer obviously is money. In the US, Solve ME/CFS Initiative have a seed grant program to try to relieve this issue.

    As I understand it that would be more CDC's area, and some progress was made in this kind of area, https://www.meaction.net/2018/05/26/u-s-votes-to-track-me-cfs-on-brfss-survey/

    Solve ME/CFS have a dormant one that they are re-focusing efforts back onto, along with a patient registry. NIH also provides funding to the UK ME/CFS Biobank, them funding one in the US would be good, in my opinion.
     
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  13. Kitty

    Kitty Established Member

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  14. Simone

    Simone Senior Member (Voting Rights)

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  15. Andy

    Andy Committee Member

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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have sent in some suggestions.
    Hopefully others will as well.
    Vicky Whittemore knows most of the major UK researchers' views.
    I think they will have enough to work on even if there is no S4ME distillate to add!
     
  17. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    This is very useful, thank you Simone. I think the most important issues are in there.

    It is difficult to start working on a document though, without knowing which subjects there is agreement on. Would be helpful if others could list some prorities as well, so we can see which ones have the most support.
     
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