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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Just got the NEWS, Devastated

Discussion in 'XMRV Testing, Treatment and Transmission' started by ABCFS12, May 5, 2011.

  1. ukxmrv

    ukxmrv Senior Member

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    It could be another virus Jen or it may be that there are different ones in different people.

    For those of us who have been fighting for 20-30 years with no luck or improvement we need these new ideas (like XMRV) and new drugs (like the ARV's).
  2. taniaaust1

    taniaaust1 Senior Member

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    They offered the test as they want to help those with ME as soon as possible.

    Everyone knew it wasnt an "approved" test and that things were still in the process of being proven. I dont see how anyone can blame the WPI as they were always trying to do what is best for us and they clearly believed in their "unproven" test.

    Those who got themselves emotionally invested in something unproven which everyone knew was unproven.. are now angry and wanting to blame instead of trying to be grateful that there are those out there who wish to help us ASAP and trying to do all they can to do that.

    I sometimes feel annoyed at this community for trying to blame their own choices when they turn out to be maybe not the best ones on others, (esp blaming those who do have their hearts in the right place when it comes to us). Nothing was ever hidden with all this. Everyone knew testing was controversial (not proven as yet) and the tests werent standarditsed or properly recognised.

    Taking unapproved tests is gambling. It could of been a good gamble or a bad one.. all depended on how it turned out. Lots of people gambled. Maybe people shouldnt gamble if they arent prepared for any outcome. (There is nothing at all wrong with gambling but I cant see how people can be crying things arent right or blaming when they do).

    (ankup dont take my post as solely directed at you as it isnt directed at anyone in particular.. Im just sick of hearing so many different people complain for own choices which turned out possibly bad choices .. no self responsiblity.
    The situation is no different from someone who chooses to do an "experiemental" ME/CFS treatment but then goes and gets mad as it dont work).
  3. chris123

    chris123

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    is the xmrv the new hiv like virus
  4. Jemal

    Jemal Senior Member

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    Maybe... need more research. It might even be worse than HIV if it causes all kinds of deadly cancers. It might also have spread to a lot more people than HIV.

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