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OMF-Linda Tannenbaum and Prof. Davis NSU Panel Video

Discussion in 'Latest ME/CFS Research' started by Ben Howell, Dec 13, 2016.

  1. Ben Howell

    Ben Howell OMF Correspondent

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    "Getting answers to ME/CFS faster through collaboration and openness"


    Hi guys,

    Here is a really great video from the recent NSU panel, with Linda Tannenbaum and Prof. Ron Davis sharing their thoughts and ideas, and future of ME/CFS with regards to openness and collaboration, and how OMF is taking a different approach to ME/CFS research.

    @Rose49

    Enjoy!

    B

     
  2. Sasha

    Sasha Fine, thank you

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    Thanks, Ben - will watch that now.

    What's the NSU?
     
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  3. Ben Howell

    Ben Howell OMF Correspondent

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    Nova Southeastern University :)


    B
     
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  4. BurnA

    BurnA Senior Member

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    Very interesting.

    If I got it right, Linda said half the results from the big data study are in and should be freely available for other researchers soon.

    I wonder what the OMFs strategy for publication is. Ron is not a fan of the publication process by the sounds of it, and I know speed is the priority, but I imagine publication is required, to be taken seriously and get grants.
     
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  5. trishrhymes

    trishrhymes Senior Member

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    Excellent message about data sharing as soon as it's available for other researchers, rather than waiting for publication. Please can someone get it shown to CMRC and MEGA - @charles shepherd?
     
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  6. A.B.

    A.B. Senior Member

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    This is great.
     
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  7. Ben Howell

    Ben Howell OMF Correspondent

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    Thats correct @BurnA

    Prof. Davis is obviously aware of the importance of publications, but as the video stated its the nature of publication and the system that is the issue. Grants seem to be based on hypothesis, which we are getting much closer too. So hopefully, funding will come with that. Its a good question though and I will find out more about it, from OMF perspective.


    B
     
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  8. alex3619

    alex3619 Senior Member

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    The problem with the non-publication of negative results that Ron Davis spoke about is something I think many scientists are well aware of but so far there is no clear winner for solutions. I would love to see open publication of data as a method to address this. I think Ron Davis is right that this is something that will have major impact on the positive advancement of science.

    If journals wont publish negative data, journals are affirming they are becoming less relevant to science. Its a work in progress, but we need a better path. Its great that this can be addressed with ME research. I think ME might become one of the milestones in research that leads science forward.
     
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  9. Ben Howell

    Ben Howell OMF Correspondent

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    100% agree Alex. I find it extremely disconcerting r.e journals not publishing negative data, when that negative data can tell us much. It is paradoxically unscientific.

    I also agree that ME, and an open data approach will be one of the milestones that will lead science forward. It was happening back with the Prof. Davis and the Genome project and look what that achieved....! It is something the entirety and progression of science could benefit from, but requires many things, lack of ego being one of them. Fortunately with OMF and Prof. Davis, that is absolutely not an issue.


    B
     
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  10. Barry53

    Barry53 Senior Member

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    Quite so. If people are trying find their way out of a complex maze, then everyone needs to know about any dead ends discovered, thereby avoiding wasted effort and concentrating fresh explorations in worthwhile directions.

    Bad enough of course if dead ends are kept quiet. But PACE went one better - claimed dead ends were ways out!
     
  11. Forbin

    Forbin Senior Member

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    Perhaps it is appropriate that no one seems to know who originated this idea, but it has been popular for quite some time.


    “There is no limit to what can be accomplished if it doesn't matter who gets the credit.”
    - Ralph Waldo Emerson
    "It's amazing what you can accomplish if you don't care who gets the credit."
    - Harry Truman

    Ronald Reagan kept this plaque on his desk in the Oval Office.

    [​IMG]

     
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  12. alex3619

    alex3619 Senior Member

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    Maybe we should be thinking of this in economic terms, given the rise of economic rationalism etc. So much scientific research is wasteful largely because, despite the need for replication etc. which is valid, so very many dead paths will be funded and the money wasted.

    Its scientific waste, and the journal system supports it. Now some version of PLOS where negative results are published, free, or open data, or a change in how papers are reviewed and edited at journals, remain possibilities. There are probably many more possibilities out there. Yet until grant reviewers realize that funding the same failing approaches again and again is not a good idea, and that a record of positive publication hides the failures, things might not improve.

    PACE was my Rosetta Stone. It showed me so very much is wrong in science, more so in medicine, and even more so in psychiatry. If you want to pick a study which is massively flawed in a myriad of different ways yet so acceptable in medicine, PACE is the go-to study.
     
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  13. sdmcvicar

    sdmcvicar

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    @Ben Howell - are you planning to post here with the address when the database goes live?

    There are already so many publications out there that it is nearly impossible to keep up with any given field via journal articles alone. There is also the issue that in "big name" journals such as Nature and Science, you're trying to be interesting to people who have little to no overlap between their research interests and your own. Thus, to publish your research, you end up focusing on selling your story, and never mind those niggling details.

    However, data repositories that have attendant forums where professionals can interact and ask questions make a great starting point going forward for advancing science and getting a "real" idea of what everyone's working on. Of course, that's totally out of line with the current administrative thinking about what makes you an employable, successful, and productive researcher. That's why it's up to the previously established and recklessly brave, like Dr. White, to move things in that direction.

    Leave your egos at the door and let's get this done together quickly is a great rallying cry for CFS/ME researchers! As long as we're all careful not to fall into dogmas that can so easily trap small research communities, I see big advances coming soon from these passionate investigators.
     
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