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Article: Dr. Katz at the Mike - the CAA Webinar on XMRV and Blood Safety

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 16, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. LJS

    LJS Insert Witty Comment Here

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    East Coast, USA
  3. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
  4. Cort

    Cort Phoenix Rising Founder

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    From CBS - who was prevented by a glitch from posting

     
  5. Cort

    Cort Phoenix Rising Founder

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    The International Blood Transfusion Presidential Award,

    I guess so :) You kind of felt that Katz just thought he was great! And I'm sure he's been in close touch with him ;) - I can't imagine that that study is not going to be positive. Annette Whittemore was practically glowing on the latest Nevada Newsmakers show - she seems very confident....
     
  6. gracenote

    gracenote All shall be well . . .

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    This was just published today.

    Findings by Reno scientists confirmed by U.S. government

     
  7. Cort

    Cort Phoenix Rising Founder

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  8. illsince1977

    illsince1977 A shadow of my former self

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    I'm sorry, but it doesn't make a lot of sense to me that the defining symptom of this illness, PEM (post exertional malaise) is caused by a multitude of things. I had mononucleosis in 1974, a full 3 years before I got CFS. Mono was a cakewalk compared to this! I didn't go to school or work for a couple of weeks, but I didn't have to have anyone take care of me. Since I got CFS I have spent many a year bedridden and dependent, unable to even walk to the kitchen, unable to sit up, sometimes being reduced to using a commode because I didn't have enough energy to get to the bathroom. How can it be that we all suffer this debilitating lack of energy and payback for the slightest effort (for me at times even turning over in bed!) to one degree or another if it's from multiple causes? Isn't it possible that all these subsets turn out to be an artifact of the medical community's lack of desire to take the time or make the effort to understand us and this illness? Your case is too complicated, I was told by an employee of a doctor who was refusing to treat me any longer! How could they understand if they fire any patient who might lead them to question their understanding of medicine? I didn't even understand the commonality of this PEM myself until recently and I got this before most of you - back in 1977.

    Another commonality seems to be the relapsing/remitting nature of this illness.

    How can we all be suffering from these things if the cause is not a common pathogen?

    It seems to me there are more cases all the time. Is that true? Or is this just an artifact of the medical community becoming more aware of CFS or the patient community being more connected because of the Internet? There are very few of us who got sick before the 80s, but many more cases from the 80s on. Or am I mistaken? Are there any surveys out there showing this growth? If the numbers are growing, couldn't that also imply infectivity?
     
  9. gracenote

    gracenote All shall be well . . .

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    Well said, illsince1977.

    gracenote, ill since 1982
     
  10. Kelly

    Kelly

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    explainer

    Ila,

    You are correct, the internet has connected patients in ways that would never have been possible in the 80s. The epidemiological studies split - those done by the CDC and the Wessely School just happen to hover around the percent they believe represents patients who complain of symptoms, but don't really have a disease. These figures are the result of broadening the criteria for CFS so that everyone and their cousin Bob meets the criteria. Other criteria, like the Canadian criteria select subsets that are far sicker. Others such as Lenny Jason's epi work estimates that many CFS patients have been misdiagnosed or underdiagnosed.

    As for the one pathogen = one disease concept, that comes from the 19th century using cholera as the example. Read up on Koch's Postulates.

    Right now the scientific evidence supports multiple causes for one disease or diseases with core symptoms. Subsets are the result of hundreds of studies that cannot find the exact same set of symptoms and abnormalities in every single patient every single time who all purportedly have CFS.

    Remember, the same pathogen can also cause multiple diseases. Mononucleosis is but one of the diseases caused by EBV, others include cancer and possibly CFS in a subset of patients.

    One reason is that CFS has become an umbrella term and is defined in many different ways, another may be because scientists don't often note how long the patient has been ill - different disease stages, or possibly tests are carried out at a time when symptoms are waning instead of going gangbusters.

    The science is there, but not enough of it. That is why some scientists like Dr. Montoya are now doing workups on patients that include multiple viruses, bacteria and toxins.

    Different treatments for different subsets is borne out by the literature showing both within CFS and in virology in general that anti-virals unlike antibiotics target only specific viruses. If you have combination or a different one than the one the anti-viral targets you are unlikely to help every single patient.
     
  11. Cort

    Cort Phoenix Rising Founder

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    Perhaps XMRV will be a paradigm shifter that will cause them to look at all sorts of mysterious diseases differently.
     

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