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ME/CFS and Beating the Clock
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Article: Breakthroughs Happen: A Model For Success in ME/CFS

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 14, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. leaves

    leaves Senior Member

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    I cant seem to open it?
  3. Sasha

    Sasha Fine, thank you

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    Me neither - I got a message telling me I didn't have permission to access the page (I got it both before I logged in, and after).
  4. leaves

    leaves Senior Member

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    hmmm I just logged OUT and then it worked when I clicked on the link on the right side of the screen, weird...
  5. alex3619

    alex3619 Senior Member

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    Hi Cort

    This is the systems theoretic viewpoint at work. There are people who facilitate this kind of thing for a living - one of my PhD supervisors was an international expert. It is also what the "pure science" types have been claiming was needed since the 60s in almost every field - but research funds were progressively going more and more to the "applied science" areas as they had immediate financial benefits. Pure science sometimes takes longer and costs more, but it also has the chance of putting things together and making even bigger and more powerful discoveries - including chance discoveries. The breakthrough here might be a synergy between pure and applied science - the best of both worlds?

    I am totally in agreement with your comment on beliefs equalling interpretations. I would like to add that most "facts" are also interpretations - data is one thing, but how we interpret the data is crucial. The internet was embraced by academia to facilitate exactly this kind of communication to enhance research, but somehow it has mostly failed to live up to expectations that researchers had about it in the 80s.

    Experts who facilitate this kind of thing usually do it in the corporate world - big business has been using them for decades. This includes organizations like the British military establishment and major airline corporations. The particular area I was trained in two decades ago is called Soft Systems Theory, and was originally developed by a guy called Checkland.

    Bye
    Alex
  6. Sasha

    Sasha Fine, thank you

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    I just tried clicking on the link in the righthand sidebar, still locked out... then I logged out and the link had disappeared altogether. :confused:

    But Alex can see it! It's just us, leaves! We're under some sort of curse!
  7. leaves

    leaves Senior Member

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    No Sasha, we are just SPECIAL :D
  8. Wasbeer

    Wasbeer

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    Cool! I'm special too. Would love to read the article though...
  9. Mark

    Mark Acting CEO

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    Cort, this article is one of your best ever I think. Thank you for only making it available to Alex and me for the time being. :D

    The reality will always fall short of any ultimate vision, in that a completely all-inclusive is almost certainly not achievable, but your vision of the transformational leap that collaboration can bring is inspiring. As you know I share with you the excitement about the possibilities that the new collaboration opportunities bring, for anyone with Medically Unexplained conditions.

    I think your three steps sound just right.

    Great stuff Cort. :victory:

    There's an extra 'the' in "could it happen here" ("the some of the same") but otherwise I think it's ready for everyone else to view now. :D
  10. Sasha

    Sasha Fine, thank you

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    :ashamed::ashamed::ashamed:
  11. Mark

    Mark Acting CEO

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    I don't mean to be mean, but I don't think it would do it justice to paste it in without the lovely formatting. I'm not sure why some can see it and others can't, but I think Cort's promoted it to an article, but not published it, if I have understood correctly, and I'm not sure of course whether he means it to be ready for publication - and I can't publish it myself anyway, plus it's much better to read it with the cool pics as well I think. I imagine he'll publish it shortly, when he's back online...
  12. LaurelW

    LaurelW Senior Member

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    Ok, thanks Mark, I'll be patient.
  13. alex3619

    alex3619 Senior Member

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    HI

    I just retried the link, it isn't working for me now either. Fortunately I still have it in an open window.

    When I wrote my reply I was a little (a lot?) brainfried. I missed making my point. Experts on facilitating this kind of thing are all over the corporate world. If we want to make it happen in CFS, we should widen our net in looking for help.

    Bye
    Alex
  14. Mark

    Mark Acting CEO

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    Alex, are you talking about experts in promoting effective translational medicine specifically, or to scientific data-sharing and collaboration? Are the approaches you're talking about being applied in any other research or medical contexts?
  15. shrewsbury

    shrewsbury member

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    I'm can't see it either. And I'm looking forward to it. Enjoyed the nytimes article (I think it was) and was hoping someone would translate the possibilities into the ME/CFS & XMRV areas. Now Cort has, and the Patient Advocate also wrote on it, but seems to have taken it down again.

    I like having good things to look forward to!
  16. Cort

    Cort Phoenix Rising Founder

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    My apologies for those who couldn't get through. I finished it yesterday but was gone for a day so I just parked it - in a hidden place, I thought. I actually thought nobody but me could see it. I guess not! Sorry about the confusion:eek:

    I think it does illuminate a way for the research community and for us as a community to go.
  17. Wasbeer

    Wasbeer

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    Well, I like a little cliffhanger once in a while. It took my mind of some time from the BIG cliffhanger (Alter paper in PNAS on tuesday?)
  18. Cort

    Cort Phoenix Rising Founder

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    I heard from someone who may know that it will probably be this week. Of course, we know that we never really know until it happens but it seems soon.
  19. Wasbeer

    Wasbeer

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    Well, if it's this tuesday, it's welcome, to say the least. I read the article, cause that what this thread is really about, and I can't think of anything that would be against this model of coperation in research efforts. Who wouldn't want this for ME/CFS? It still feels as rather utopic though, maybe because 'our' research community is smaller and (therefore?) the ego's and differences seem to be bigger. But why not give it a try? First create the infrastructure, than create the climate that's needed for such a shift in mentality. Who will be leading the way? If Suzanne Vernon can achieve this, it would be a small miracle.

    Some promising new results (again...tuesday?) would hopefully bring in some new research groups as well, and that might be just what's needed to create fresh air in a field where some of the same researchers have been opposing and more or less competing with each other for decades now. Fresh air that might result in a fresh way of working together. Let's hope so!
  20. Lynn

    Lynn Senior Member

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    Great article Cort. Very eloquent and hopeful. I also thought of the CAA when I read the NY Times article. Now if we could only get players like the NIH, FDA and Big Pharma to lend a hand. Maybe we will have some drug trials happening as well. Hopefully XMRV will lead them in our direction.

    Lynn

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