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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Deja Vu?

Discussion in 'XMRV Testing, Treatment and Transmission' started by its ME Jeff, Mar 2, 2011.

  1. its ME Jeff

    its ME Jeff

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    "I have not seen a single piece of data that has convinced me we are wrong. The virus is there, it's real, it's alive, it's not a lab contaminant, it's not my imagination, and I don't care what Steve Straus tries to do, he can't make it go away.". Elaine DeFreitas 1991 from the book Osler's Web, page 480. Why do I feel like I am re-living 1991? Only this time I am very I'll, following a retro virus story unfold.
  2. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    YES - we can use the same news story and abstract
  3. ukxmrv

    ukxmrv Senior Member

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    It feels different to the first time Jeff. I had ME before the DeFreitas discovery (and don't forget Holmes and Martin). We didn't have the huge internet groups then and the access to medical papers on line.

    This time I get can the actual papers really quickly, read them (when my brain works occassionally) and then examine the evidence.

    We also have patients trying ARV treatments and can follow them online. If in the right countries we can also get the test for the retrovirus a lot easier this time.

    XMRV+
  4. leela

    leela Slow But Hopeful

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    Does anyone know why Elaine DeFreitas is not on board now?
  5. Navid

    Navid Senior Member

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    not to be wicked but steve straus got struck by a powerful hit of karma....died of brain cancer at 60...which in hindsight is/was probably related to a retro-virus he buried......life's a b_tch and then you die.
  6. dannybex

    dannybex Senior Member

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    Hi Leela,

    It's my understanding that she was in a bad auto accident a couple years after her research was possibly squashed, and has been in very bad shape ever since.

    But I wonder -- and have why the WPI and/or other researchers aren't trying to replicate her work (apparently it was a different retrovirus) -- in fact I asked the question again this afternoon -- and Cort answered on this thread:

    http://forums.aboutmecfs.org/showth...amination-now-more-likely&p=162018#post162018

    Very sad she's been kind of forgotten by most.

    p.s. MeJeff -- Hilary Johnson has very strict rules against quoting from any of her published works. Hope you got permission to post that.
  7. leela

    leela Slow But Hopeful

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    Thanks, Danny. One has to wonder...Cort's answer wasn't really an answer, though--does he mean "didn't pan out" the way some are trying to make XMRV not pan out? My understanding from what I've read is that the same thing happened to Elaine... in that the replication studies did NOT follow her same methodology, so they did not find virus, so funding dried up....<sigh>
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    "There are none so blind as those who WILL NOT see!"
    always remember that, folks and the incredible hubris and blind stupidity in science when new ideas come along, very often they are utterly resisted, not considered and evaluated, as they should be.
  9. toddm1960

    toddm1960 Senior Member

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    All the information I've been able to find shows the exact same thing happening, just an avalanch of negitive studies. All done very quickly and published immediately, and remember back then with no internet it was tough for a small research group to get out any information. Then came the car accident (not that any of us are into conspiracies) and put an end to her work. I did see something from her when WPI first announced word of XMRV that she wanted to speak with Judy about her findings. So when I see people say good science will always win out........Elaine may disagree.
  10. dannybex

    dannybex Senior Member

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    Hopefully Cort will see this thread and answer himself. :)

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