Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Psychologists, wake up! CFS is possibly an infectious disease.

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Nov 3, 2010.

  1. Jemal

    Jemal Senior Member

    Toine is a he :)

    Also, to be fair: Toine de Graaf has been criticised because apparently he has participated in an anti-vaccination campaign. Vaccinations are a *very* touchy subject it seems. I did a search on his name in Google and the first result I get is the website for a Dutch institution that fights quackery :) I know that institution and they do a lot of good work, but they can also be a bit fanatical.

    Anyway, I am very happy with this article.
  2. Sean

    Sean Senior Member

    Thank you, Jemal.
  3. Valb626


    Thanks from me, too, Jemal.

    Although I did like this piece of the google translation:

    This 'combination therapy' in the past decade increasingly come under attack lie.
  4. xrayspex

    xrayspex Senior Member

    It just came to my attention there are problems on those 2 fronts......Lipkin doesnt want to follow protocol the way Mikovitz and Singh say should be done to find xmrv and Switzher and Heninene are in the blood working group so that is not encouraging.

    Here is info regarding what singh says and what lipkin wants to do:
    singh says:
    Finally, an ideal study would use at least one method that has resulted in detection of XMRV in a previous study, preferably using a set of samples that were analyzed in that same previous study and are known positives or negatives.

    and the problem:

    That is precisely what the NIH-sponsored Lipkin study has NOT so far proposed to do, and appears to be against Lipkin's personal philosophy of resolving conflicting results. That is a HUGE problem with that study (along with the uncertainty about what cohort he will use, especially as he seems to be collecting it himself). It is very, VERY important that the Lipkin study's design be changed to include positive samples from the WPI and from Lo/Alter, and that its test samples be collected by well-known ME/CFS clinicians such as Bell, Peterson, Komaroff, Cheney, etc..

    The NIH - specifically, Francis Collins - should be urged to require Lipkin to modify his study in these two ways. Ila Singh has provided a great professional reference to back up these requests!

    In a paper Lipkin wrote he gives his argument against the use of positive samples from labs that have 'found something':
    Some key partners may suggest that it is easier to independently test samples previously found to be positive
    than to invest in a new sample collection. This path should be
    discouraged because it does not address issues of diagnostic
    stability, geographic or temporal bias, or sample contamination.
    so houston, we have a problem.....cover up continues perhaps, unless we hit a tipping point in spite of these people's efforts
  5. Berthe

    Berthe Senior Member

    near Antwerp
    Hi Jemal,

    You did a wonderfull job translating the really encouraging article. I've read it in Dutch and it really made my day. It's nice that a journalist like Toine works together with patints and that he's willing to tell the thruth!

    For xrayspex,
    Would it be a good idea if the samples collected by Lipkin, also would be tested by Judy? I'm curious about these results!


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