?'S ABOUT VIP Dx and Mikovits

Discussion in 'Fibromyalgia Main Forum' started by quanked, May 12, 2010.

  1. quanked

    quanked Member

    From "Big Pharma & 'the perfect storm':we can only hope " topic post by aussiewoman--

    "...A diagnostic test for the virus was already being marketed at $650 a shot by VIP Dx, which just happens to be owned by Annette and Harvey Whittemore."

    Does not this seem like a conflict of interest--I mean the Whittmores owning the lab the performs the XMRV tests--? I had no idea that this couple owned the lab.


    "...Given the great diversity in CFS symptoms, disclosure of the medical
    histories and clinical conditions of the high number of WPI's XMRV-
    infected CFS patients is critical. "Of course, this would generate more
    questions, but a cleaner association is needed," Vernon says. "I don't
    know why WPI won't provide this."

    So far, Mikovits has refused to budge. "No additional medical histories
    or anything about the patient population would shed any light on XMRV," she says."

    Anyone have an ideas why Mikovits will not provide the information about the patient population that others are requesting? Does it matter that she will not?

  2. gapsych

    gapsych New Member

    From what I have heard, she is a very confrontational person. That is not necessarily a negative.

    She is the one who attended an autism convention where the key note speaker was Jenny McCarthy. This causes me to be concerned. But in her defense she was just speaking about XMRV being found in some autistic children. I think she was asked about her stance on vaccinations and nicely avoided the question.

    Transparency is an absolute necessity in science. I have no idea if they have a good reason for doing this but it can't sit well with the scientific community.

    I did not realize that the WPI did not actually discover the XMRV.

    I wonder how many backers she has of this policy at WPI?

    Dr. Petersen leaving has not helped matters. Again there could be a good reason for this and can only speculate what it is about.

    Anyone have more information?


    ETA I guess I need to go to PR. Aussie is all the info about outdated?[This Message was Edited on 05/13/2010]
  3. gapsych

    gapsych New Member

    "Yes, PR is the best source for current, cutting-edge information. Some of those folks are really on the ball and when they put their collective minds together doing detective work the revelations can be mind-blowing."

    I hope you are only referring to the information on XMRV but fine if you aren't.

    I do not want Cort Johnson and his cronies representing us in the CFS community. No wonder the medical community sees us as crazies.

    They do not like me as I reported, or rather I should say about 30 of us reported the doctor who supposedly "cured" Michael Dessin with Neural Therapy using homeopathy. Dr. Whitfield of Columbus Ohio or I should say near. His name was witheld but I found out who he is.

    They think it was only one or two people who reported Whitfield to the Ohio Medical Board and the Attorney General of Ohio. LOL!! Things are being investigated but the process is very slow.

    Frankly, I do not give a damn if this gets me kicked off the board.

    I am just f$$$ing sick of the woomeisters and have become heavily involved in working on the stopping unproven woo therapies. That includes Myhill and because of that I was threatened and accused of posting on several sites I had not even been to. But I will not back down as I think this is an ethical issue.

    Please do not think I am ranting against you. This is a passionate issue for me!!

  4. gapsych

    gapsych New Member

    I did not know they were asking for private medical histories. Can they give the medical histories with names deleted? I would think the medical histories of the people in the study would be helpful to analyze the study.

    Okay, I need to do more research.

    [This Message was Edited on 05/13/2010]
  5. gapsych

    gapsych New Member

    I know, it is like eating popcorn. You can't stop. I can't tell you how many hours I have been following this saga. But hey, at least I have not done any cleaning and very little cooking!!

    I think I have learned so much about group psychology or would that be sociology?, to earn a master's degree. I find things like this absolutely fascinating.

    I am following several sites.

    Actually, I think it is a continuous marathon of the Lifetime Channel Movies, LOL!!

    [This Message was Edited on 05/13/2010]
  6. AuntTammie

    AuntTammie New Member

    The latest issue of Science includes comments by Wessely and company re the original XMRV study, and also has Dr Mikovitis's comments re those comments......she addresses some of the issues/questions in this thread in her comments, too

    It is currently available to read online, but only for a short time, bc it is normally subscription only ....unfortunately, I saw and read it from a link on Facebook and now cannot find the first three responses (which were inaccurate in parts), but this is the link to Dr Mikovitis's repsonse:

  7. quanked

    quanked Member

    WPI? I did not know this. When did this happen and why?

    Last I heard the testing was $450.00 a pop--I called the WPI a while back. Still very high and insurance is not going to pay. I would like to know the profit margin.

    I think that medical histories would be very important--I do not see how a complete assessment of a patient could be done without it.

    I wonder where we will be in November with XMRV.
  8. AuntTammie

    AuntTammie New Member

    like I said, read the response I linked to above - it explains your questions
  9. gapsych

    gapsych New Member

    What concerns me is that Dr. Kerr is saying no more tests are needed.

    I don't understand. If the tests for finding XMRV are different why not do the same one? Perhaps do all the types of testing done in the recent studies but that sounds like it would be very cumbersome.

    On the other hand I think not giving patient information is making WPI look suspicious. It is crucial to know the population studied. Information can be given without the patient names.

    Worrisome, indeed.

  10. quanked

    quanked Member

    A movie or a very simple book and I mean simple! I am lol but I am serious.

    Finally, I am getting ahair cut that I have needed for about 4 or more months. I would rather not go but I am close to taking my sicissors to my hair in annoyance!

    But I have more to add--if I remember.
  11. gapsych

    gapsych New Member

    I have some time tonight so I am gong to PR to see about the latest news. If I have the energy which goes with the territory of having this DD and sometimes it is hard to keep up with this.

    Okay I know this is more chit chat but quanked now I feel better as I went three and a half months of not getting my hair cut. I am 100% gray, I started graying in my late twenties, have always had it colored but without that my hair looked just awful. I did end up cutting my bangs and that was not a pretty picture. I took to wearing a scarf all the time or telling people it was the latest trend.But the thought of sitting for that long was too exhausting and overwhelming.

    Keeping my fingers crossed with all the WPI stuff.

  12. AuntTammie

    AuntTammie New Member

    Yes, it is OT, but given the timing of your comments, I had to mention that I did just cut my own hair......and well, let's just say that it is a LOT shorter than I had intended!

    didn't want to cut it at all, but it is falling out again, and shorter makes that less obvious

    I can't go anywhere to get mine cut anymore bc my MCS is so bad, and I also have a really hard time w/ pain and exhaustion sitting there for any length of time (if I walk in) but I never know if I will be feeling well enough to try to make appts anywhere.....of course, when I can't stand up for any length of time w/o passing out, my vision is all goofy, and my coordination is gone, and I shake, cutting my own does not work so well either!....couldn't get it even, so I kept cutting more off, and I had to keep taking breaks to rest, so it kept drying which made it hard to get even, too

    I was getting pretty upset about it (& I am still upset about the inability to go somewhere to get it cut),but I am now laughing about the whole process of cutting it myself, too.....and I did actually manage to see a few friends the other day and got a lot of compliments about it, so I don't feel quite so bad......but it is a pain in the butt to get it to lay down when it's this short

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