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WPI UK XMRV testing/study

Discussion in 'XMRV Research and Replication Studies' started by JAS, Mar 5, 2010.

  1. Dolphin

    Dolphin Senior Member

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    One big factor is how many non-ME/CFS people took part. I'm afraid I don't think people who don't have ME/CFS should have taken part.
  2. Bob

    Bob

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    Dolphin, I expect the WPI will have asked the participants whether they are ME patients or not... So they will separate the figures between ME patients and the normal population, or family members.
  3. Dolphin

    Dolphin Senior Member

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    They didn't get ethical permission to ask for the full UK study (200). Not sure about the 50 - I think they were trying to gather information post hoc. It would have been better if people who didn't have ME/CFS hadn't looked for a freebie in my opinion.
  4. Bob

    Bob

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    Oh, I forgot about the ethical permission thing...
    With hindsight, I suppose it would have been better if it was only for ME patients...
    but it's done now, and I think we get the results later today anyway, don't we?
    Maybe Judy will devise a way to separate ME patients from family members etc.
  5. bullybeef

    bullybeef Senior Member

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    Dr. Mikovits offered to include my wife and children in the study.

    Not only does she wish to prove XMRV prevalence in the UK, she also wished to prove infection rates, how many family members without ME are also XMRV+?

    This would then urge the UK government to issue a health warning because just having a percentage of a nation positive for a virus is one thing, but if that percentage is infectious, well they would have to move on these findings.
  6. Dolphin

    Dolphin Senior Member

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    Is Dr. Mikovits psychic and knows which people have a partner, children, etc? I don't think so, I think the families asked.
  7. bullybeef

    bullybeef Senior Member

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    I don't think there's any need for sarcasm. Obviously I was asked whether I had immediate family members.
  8. Dolphin

    Dolphin Senior Member

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    I think you're being misleading. I'm trying to get at the truth.

    So you wrote to her and said, "can I take part?" and she said, "have you any family members as we are looking for family members to take part?" She didn't ask me that. I don't think that's what happened.
  9. bullybeef

    bullybeef Senior Member

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    Yeah, that’s pretty much what she said.
  10. Dolphin

    Dolphin Senior Member

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    Earlier in the thread, you wrote:
    http://www.forums.aboutmecfs.org/sh...RV-testing-study&p=54436&viewfull=1#post54436
    and
    http://www.forums.aboutmecfs.org/sh...RV-testing-study&p=53867&viewfull=1#post53867
  11. bullybeef

    bullybeef Senior Member

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    I think you have got some very scary issues if you go digging through a person posts.

    Personally speaking, why I agreed for my family to be tested is none of you business. You don't know me, and I certainly don't wish to know you. Remember envy is a sin.

    Your argument is now with yourself, or please take it up with Dr. Mikovits. I would prefer to remain happy, rather than right.

    Goodbye.
  12. Dolphin

    Dolphin Senior Member

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    My "attitude" was partly because I don't think Bullybeef really expressed the full facts. If he hadn't claimed what he did, I wouldn't have challenged him.

    We have had plenty of problems over the years with watered-down ME/CFS cohorts. I've listened to people moan about them for over a decade and a half. It is disappointing that it will again happen in this study which also costs money.
  13. Esther12

    Esther12 Senior Member

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    It's not like people were pretending they had CFS in order to get a free test!

    Maybe the data provided from families will be useful to them too.
  14. Dolphin

    Dolphin Senior Member

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    Or one is dealing with somebody who is not giving the full facts.
  15. VillageLife

    VillageLife Senior Member

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    I think we have just got to wait and see.:hug:
  16. urbantravels

    urbantravels disjecta membra

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    I'm not at all sure what this bicker is about, but I suggest the participants take it to PM.
  17. bullybeef

    bullybeef Senior Member

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    Apologies for any argument from my side. I resent conflict, and I use the forum for support and information, and not to be challenged.
  18. Dolphin

    Dolphin Senior Member

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    I am sorry that the discussion became a little heated.
  19. Bob

    Bob

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    Yes, apologies from me too... I should have used PM.
  20. Mark

    Mark Acting CEO

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    I take a hint that there's some frustration lying behind this dolphin but it seems very unfair - if I'm missing something let me know. There's a wider issue emerges from this for me that we're going to have to face sooner or later. What happens to those who are XMRV- ? Just to be clear: that's the people who remain chronically ill with something they thought was ME and don't have the right retrovirus, maybe have some other cause, maybe another HGRV, maybe something else, who knows? Still Medically Unexplained - I think we all know what that entails. It's worrying if everyone who tests negative is going to acquire a new army of born-again healthy people to add to their tormentors. I would hope for a little more solidarity. I'm not saying that's what this particular argument was about, I think much more highly of Dolphin than that. But it will be an issue in general. Personally I didn't get tested because it was clearly important that the most clear-cut cases be tested, and I've never said I'm one of those. I have WTF. So I get the point, but it still seems harsh. This argument's over, so we can let it lie, but the wider issue will come up again and again. Maybe worth figuring out the ethics of this ahead of time?

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