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Speak out about the Reeves definition delaying XMRV/XAND research

Discussion in 'XMRV Research and Replication Studies' started by The Phantom, Oct 26, 2009.

  1. hvs

    hvs Senior Member

    Poet, good forum etiquette entails taking a pulse of the forum for the tone with which participants refer to each other. This tone might be okay in some other fora, but it is out of line here.
  2. anne

    anne Guest

    Poet, if you are unaware of the cohort that the CDC uses in their studies, poke around the internet. They have designed criteria that allow in people who are not actually physically ill at all but rather have psychological disorders and then make proclamations based on those disorders, and these are deeply harmful to those of us who have been ill.

    If you have not paid attention to the sordid history of the CDC and CFS, this discussion will sound paranoid. It really boggles the mind what they've done, it feels like something out of a bad book. I don't know their reasons--it might simply be a long, drawn out case of confirmation bias. But they have dug in their heels--Dr. Reeves said as much in his quotes to the NYTimes. The CDC said long ago this wasn't a virus and have spent the last 25 years operating that way. It is, according to them, a "state of unwellness."

    They announced today that they will use this same sample to do the tests on XMRV. By no one's measurements but their own do these people have CFS, and their methods have been criticized far and wide because of the harm they are doing. So if they do use this sample, they will not replicate the results, because 40% of those allowed in have Major Depression and not CFS at all.

    If the retrovirus had been found earlier, perhaps I would not have infected my husband. Perhaps something could have been done before my pregnancy so I did not have to worry about my child. So, yes, I'm a bit annoyed at them for tilting at psychosomatic windmills while people get ill.

    Sometimes, they are actually out to get you.
  3. Aftermath

    Aftermath Guest

    Please Show Some Respect

    I appreciate your opinion, but referring to other forum members as paranoid is unwarranted and inappropriate.

    Please show some respect for our other posters.
  4. PoetInSF

    PoetInSF Senior Member

    I've been involved with CFS only since 2004, but I've read most of the stories, I think. Personally, I see a lot more of unwarranted enthusiasm for every time a new "discovery" is announced than conspiracy by CDC. It would be fantastic if one of these new discoveries pans out, but it's going too far to stop CDC as if the new discovery is a proven fact when it hasn't even been replicated. That is contrary to the interest of CFS community, IMO.
  5. Dolphin

    Dolphin Senior Member

    I'm not exactly sure what you are referring to?

    If you are referring to the petition, "CDC CFS research should not involve the empirical definition (2005)" http://www.ipetitions.com/petition/empirical_defn_and_CFS_research : the petition on the definition was set up in April when there was no talk of XMRV.

    The CDC have produced dozens of studies using this flawed definition already.

    I think the petition has brought useful focus on the flawed defintion which wasn't talked about much in 2006, 2007 or 2008 (except briefly in 2007 when the Georgia study came up with a prevalence figure of 2.54%).

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