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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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XMRV Advertising

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by ixchelkali, Jul 30, 2010.

  1. valentinelynx

    valentinelynx Senior Member

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    Tucson
    Thanks. What about the reference to multiple sclerosis and "other immune dysfunction diseases". Do you have any idea from what hat he is pulling that?
  2. cfssufferer

    cfssufferer

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    Adelaide, Australia
    The WPI have mentioned that XMRV is found in a percentage of atypical MS cases. These arent your normal MS patients as Dr Holtorf seems to be confusing them with. The XMRV positive percentage of atypical MS patients hasnt been made public and the study hasnt been published yet. I believe Dr Holtorf is misinterpreting the German respiratory tract study when he refers to other immune dysfunction diseases.

    Dr Holtorf reaches the conclusion that XMRV is opportunistic based on the German respiratory tract study. He doesnt realise that <10% XMRV positive for immunosupressed patients and >95% for CFS patients mean that immunosupression is not causing XMRV to become prevalent. If immunosupression was the case, we would expect >95% positive to XMRV for immunosupressed patients. He also doesnt realise that XMRV is an infectious exogenous retrovirus so his comparison of XMRV to HHV6, EBV etc is spurious. The most likely mode of transmission for XMRV at the moment seems to be horizontal and vertical transmission and this isnt the case with the other illnesses he mentions. XMRV is not ubiquitous while the other illnesses he refers to are.

    To reassure you of Dr Holtorfs ignorance towards XMRV, it is worth reading what Dr Teitelbaum thought several weeks after the original WPI XMRV study was published. This can be found here: http://www.endfatigue.com/health_articles_f-n_2/Infections-xmrv_virus_found_in_cfs_patients.html
    Dr. Teitelbaum has since changed his view on calling XMRV an opportunistic infection and has become very interested in it. This is emphasised by his recent article in Psychology Today. A thread discussing this article is here: http://www.forums.aboutmecfs.org/showthread.php?6466-Dr.-T-on-the-recent-controversy
  3. valentinelynx

    valentinelynx Senior Member

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    Tucson
    Yeah, I assumed Dr H was confabulating. I remember reading Dr T's defensive response to the XMRV Science paper; wouldn't want to be proven wrong after all these years of promoting the multifactorial theory of CFS. I've always thought that the simplest explanation of the etiology of CFS was most likely: an infectious agent. That's what it feels like and presents like. When people get into the "multiple causes" hand-waving behavior in explaining disease, I think it is a way of avoiding admitting lack of knowledge. We learn so much information in medical school; there's no room for any new ideas! Remember in the early days of AIDS when the prevailing theory was immune system failure from exposure to excessive challenges: too much playing around with sex and drugs by those immoral debauched homosexuals (please realize I'm being facetious! although that really was the insulting, morally condescending theory). Some so-called scientists refuse to abandon this theory (Deusberg, who has done unfathomable damage to the fight against HIV in Africa by refusing to believe that HIV can cause AIDS), but unlike with ME/CFS they are considered fringe.
  4. MHope

    MHope

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    Orange County, CA
    Hope123 and Valentinelynx,

    I know what you're saying about FOCUS.

    I have e-mailed the person at Holtforf Medical Group that e-mailed me stating the negative XMRV result. I've sent them two e-mails since my post. I requested the information regarding the lab and methodology used to test. The Holtorf e-mail to me states that they only recieved test results back from the lab for patients that tested positive. I told them that I was entitled to know the information I was requesting regardless of the test result. I plan on calling tomorrow...since the e-mail thing doesn't seem to be triggering any response. Nothing will surprise me at this point.
  5. urbantravels

    urbantravels disjecta membra

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    Los Angeles, CA
    A registered letter with signature confirmation might not be a bad way to communicate your request.

    I have found that leaving a very solid paper trail like that often inspires action, when emails and phone calls can be more easily ignored. Poor man's lawyering.

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