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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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Myra McClure (On now)

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Sep 13, 2010.

  1. VillageLife

    VillageLife Senior Member

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    Myra McClure Interview (On now)

    http://www.microbeworld.org/index.php?option=com_content&view=article&id=721&forumid=331851

    12:00 noon EDT Emerging Issues in Infectious Disease
    Participants in this session will discuss the latest issues appearing on the horizon for infectious disease researchers including the changing epidemiology of drug resistance in Salmonella, epidemiology and management of extensively drug-resistant (XDR) tuberculosis and the possibility that chronic fatigue syndrome could be associated with a retroviral infection.

    * Myra McClure, Imperial College London, United Kingdom
    * Sara Cosgrove, Johns Hopkins University, Baltimore, MD, United States
    * John Crump, Duke University Medical Center, Durham, NC, United States
    * Gerald Friedland, Yale University, School of Medicine, New Haven, CT, United States
     
  2. leaves

    leaves Senior Member

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    oh my ......
     
  3. Lynn

    Lynn Senior Member

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    I just picked up the very tail of it. McClure is still talking contamination.

    Lynn
     
  4. LJS

    LJS Insert Witty Comment Here

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  5. August59

    August59 Daughters High School Graduation

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    I cannot get this video to run.
     
  6. LJS

    LJS Insert Witty Comment Here

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    I just watched the video, in the first part of her presentation, I was frustrated with McClures statements but in the Q&A section I was surprised that she seemed more open minded then her initial statements would make me believe. Though she still clearly thinks she is right and XMRV does not exist in CFS patients you can see herself slowly shifting how she words her response so that she will not look too out of touch if she is proven wrong which I am sure she will be soon. I found it amusing that a few times she caught herself speaking what she really though and backtracked in mid-though to reword her statements. I also find it amusing that she feels because she did not find it everyone else is wrong and unwilling to accept the great lengths the NIH went through to prove contamination was not a cause.

    The bottom line it is does not really matter what she thinks anymore, though she may be one of the loudest critics of the XMRV CFS link she herself even states she has no influence in the ongoing research at the NIH etc to sort this out. So I would not spend to much energy getting worked up over what she says, she is on the sidelines now and others have taken over.

    I can't wait for another positive study to come out, once we get a few more positive studies and the testing methods nailed down I think we will see things speed up substantially.
     
  7. CBS

    CBS Senior Member

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    LJS,

    I agree with your assessment of the importance of Dr. McClure's statements.

    In her own words:
     
  8. Lynn

    Lynn Senior Member

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    What I thought was interesting is that she decided that there are not just four negative studies but six, because the CDC used two other labs to confirm their negative results. I didn't hear give that same courtesy to the WPI's positive study which used two other labs as well. I guess it's debating 101. There is no point in bringing up anything that does not support your case.

    I do agree that she is expressing a more moderate tone and that her opinion does not really matter in the grand scheme of things.

    Lynn
     
  9. julius

    julius Watchoo lookin' at?

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    She is so obviously beat by this. You can see it in her face, and hear it in the way she answers. The poor thing.
    I think she is so emotionally overwrought by this whole thing, she probably can't even see it objectively anymore.

    It's pretty clear now that there is at least some related virus in patients more than in healthies, but she can't make that step.
     
  10. Berthe

    Berthe Senior Member

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    Good news for all the people who would rather see Myra go then come. The Belgium McClury,prof. Van Houdenhove is gonna 'retire' this month. He was the leading men in the centra for CBT and GET. During his advocacy for this kind of treatment he changed his mind on the nature of the symptoms. They were very real as in biological, but caused by stress. He wrote books about this stress-crash theory. Of course CBT and GET remained the proper way to treat the patints. It's convenient for both parties involved that he retires. Perhaps Myra can follow his fine example.

    Love,
    Berthe
     
  11. Esther12

    Esther12 Senior Member

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    I've had trouble with the video, and given up as it sounds like their's no news. Thanks for the summaries though.
     
  12. Boule de feu

    Boule de feu Senior Member

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    What strikes me (and maybe someone has already mentioned this) is the fact that she is constantly repeating "Chronic fatigue patients" - in her initial presentation- and not "Chronic fatigue syndrome patients". It seems that she is referring to a different cohort... (including anyone who is suffering from chronic fatigue).
     
  13. Rivotril

    Rivotril Senior Member

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    after the letter from Annette to McClure, and the reply, many people still had the opinion that Mcclure was just an innocent victim of Weasley, who had used her and her lab for getting his crap study done.

    I hope that , after her xmrv workshop appearance, and now this conference, nobody still thinks Mcclure is just there as an objective scientist who is not involved in the psycho mafia club.

    this woman is just there for her own ego, her own reputation and doesnt give a sh@t about our health
     
  14. ukxmrv

    ukxmrv Senior Member

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    Freudian slip then, Boule de feu.

    The weasel would claim that his patients are all bone fide CFS
     
  15. Boule de feu

    Boule de feu Senior Member

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    - lol -
    I thought in the U.K. ME had a psy label (fortunately, things seem to change now) and I remember Wessely saying that he did not believe that the Canadian Consensus really could define the CFS population. So, I wonder how they picked their cohort?
     
  16. ukxmrv

    ukxmrv Senior Member

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    This is how patients were described in an earlier paper by Wessely et al

    "The authors measured 24-hour urinary free cortisol in a group of well-characterized patients with chronic fatigue syndrome"

    He used patients who had stored blood for earlier research of his. They would have been recruited from the Kings College "chronic fatigue unit" or similar. The criteria would be whatever he was using at the time (such as Oxford ior one of the CDC's). I did go back and looked at patient selection when the paper was originally published. I'll have another look.
     
  17. Boule de feu

    Boule de feu Senior Member

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    How can McClure say with confidence that the problem is not one of "cohort choice or differences"? She just discards this possibility and does not explain any further how it was done...
     
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I have not seen it, but if that is what she is saying good point!
     
  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I think she is "contamination" and unless she is more objective, should just get out of the debate! So useless, please keep her on the other side of the pond!!
     
  20. Boule de feu

    Boule de feu Senior Member

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    On the topic of contamination, I hate the example she gave:
    They were collecting blood sitting on a bench and this is why there was contamination... or something like that?
    When I heard this story I had the impression that she was saying that she is better than everyone else and others were morons for not figuring out (it was implied that they did not know how to do their job properly) but then she reassured everyone by saying that it is probably not the case with Judy M. She is probably very competent. And THEN (the bombshell!) SHE ADDED that she hasn't gone to the WPI institute "to watch" but she is sure that things will be sorted out very quickly...

    (- sarcastic -) Maybe she should go up there and play the detective to see if Judy and gang can do their work properly... that would solve everything!... (- sigh -) Judy and company are probably spitting in their test tubes before they analyze them (- exasperation -).

    At first, I really liked her and I wanted to give her the benefit of the doubt. She looked confident and I thought she was a strong looking researcher. Very knowledgeable. (At least, that is what the general public probably saw in her). But, after listening to her for a while, I felt she was arrogant, over-confident, etc. Not a good feeling at all. Unfortunately, the general public does not know what I know so I'm afraid that their opinion about her will not change. She probably scored high during this interview.

    One part in the video that is really funny is when she has to explain that she was able to find XMRV... in positive controls !
     

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