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What's up with Wikipedia's XMRV page??!!

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

  1. leaves

    leaves Senior Member

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    So every time I tell people I'm XMRV+ they start googling and get at
    http://en.wikipedia.org/wiki/Xenotropic_murine_leukemia_virus-related_virus


    What's up with that? To me it seems very dismissive of the virus, not unbiased at all; they only quote criticism of the WPI paper and don't mention the defense of WPI. Moreover they dont mention the replication studies, and studies that test HIV meds.

    What do you all think?
  2. V99

    V99 *****

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    Tell them to look at Disapedia. Either way, they are not written by experts, and the information on these sites is known to be dodgy. Tell them, it's not worth looking at right now, but a clearer picture may be available by the end of the year. Also warn them it may take several years.
  3. serenity

    serenity Senior Member

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    yeh, they just dont' have enough info yet.
  4. acer2000

    acer2000 Senior Member

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    They are just reporting what has been published. And unfortunately, at this time, there have been more papers published that say they can't find XMRV in CFS than papers saying they can... :-(
  5. Angela Kennedy

    Angela Kennedy *****

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    Tell people to always look at the TALK pages on Wikipedia - there you get a good sense of what power games are being played, how evidence is being suppressed or over-emphasised, the personal ideology/agenda of those controlling the pages etc. etc.

    Wikipedia is notorious for that sort of thing, NOT JUST with CFS subjects.
  6. Andrew

    Andrew Senior Member

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    Here's what's wrong. They said "but these findings were not replicated in three follow-up studies." That is a misleading statement because replication was never attempted. Also, the word "follow-up" makes is sound like they concluded what the first one started, when they actually ran fewer tests. What it should say is "other studies did not find this correlation."
  7. leaves

    leaves Senior Member

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    Yes Andrew I agree with that!
    The problem with Wikipedia is, it is an established institution. We can't change the fact that people (including Drs!!) inform themselves through wikipedia. I don't know if there is a possibility for us to improve the website, especially because of the politics some people mentioned. But then again, they can't remove facts, can they?
    Especially if Mikovits has given a defense in Science, this is published material and belongs in the Wikipedia page.
  8. Angela Kennedy

    Angela Kennedy *****

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    Yeah, um - go try and edit that page. I'm genuinely interested to see what happens. Remember the ostensible rationale behind Wikipedia is anyone can edit. But go see what happens when you try... I do actually think someone needs to go and put the Mikovits latest in there- but I think there will be some cock and bull argument as to why that will be 'inadmissable'.
  9. Angela Kennedy

    Angela Kennedy *****

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    Yes exactly. Misleading statements. I would say go and edit that and change it. But expect a revert/edit war!!!
  10. JayS

    JayS

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    Based on what I've seen on those Talk pages...that's a battle I can't personally even imagine having the energy for. There are a number of people who contribute in a manner that seems helpful to us, while still being fair and adhering to WP policies and guidelines. There are also a couple of people who seem to react to anything and everything that comes to light which is favorable to us by trying to diminish relevance as much as is possible within the policies and guidelines. Some people go clearly beyond the policies--on both sides. But their efforts rarely stand, and in some cases they are banned.

    The Talk page on Simon Wessely is an interesting read, although many CFS/ME--related pages are. On some there are relentless efforts to trumpet the perceived efficacy of CBT & GET. On the Talk page for the main entry for CFS, in the archives, not long after the WPI XMRV study was published, there was a heated discussion over whether or not XMRV should even be mentioned in the CFS article--at all. An editor or two who don't seem involved much in CFS articles were vehemently against it, but it was put to a vote and the reference was retained. The page for WPI is similarly very heated.

    I would caution that reading this stuff can be aggravating, and for many patients should probably be avoided. I can't say this is a great source of information. It is a good way to get a grasp on how people seek to minimize our illness on an ongoing basis, their tactics, their attitudes, their methods for following the letter of policy, for what certainly seems to be an underlying agenda.

    That said, although some posters on this board have certainly had their share of negative experiences, as time moves on, we do seem to have decent representation, in spite of patients and advocates having been banned as editors (I am curious if some of the CFS-patient editors are on this site, although it may be best if they are not identifiable, in the interest of avoiding perceived bias). If you're going to edit? Be careful, and do read some of these pages if you're not acquainted with WP policy, because if there's something that seems like it should obviously be part of an article, or if something seems distorted, overstated, or under-represented, chances are it's that way because little that could be interpreted as being in violation of WP policy is allowed to stay. The Wesselys and Reeves have done a lot of damage and have much 'data' on their side to support their cruel garbage. I'm not sure an edit war could make us any less popular than we seem to be there, so what the heck...but it could be an ambitious undertaking. Proceed with caution.
  11. Andrew

    Andrew Senior Member

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    I made the change. They really have no grounds to disagree with it. Let's see what happens.
  12. cfs since 1998

    cfs since 1998 *****

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    I saw your revision. I think that's the way to do it--change a few words at a time. That has worked for me in the past.
  13. JayS

    JayS

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    It lasted for about an hour and a half.
  14. cfs since 1998

    cfs since 1998 *****

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    Well it wasn't reverted (undone) but reworded again. It is still better than before:

    "these findings were not replicated in three follow-up studies" (before)
    "but three other studies did not find this correlation" (Andrew's edit)
    "but three other studies found no evidence of XMRV in patients" (now)

    It's like a negotiation I guess...
  15. Curious guy

    Curious guy Guest

    Just today a paper came out in the journal "Urology" from Emory which describes the way to identify XMRV in prostate DNA by PCR. They used the PCR oligo which I think more or less similar to the one in original Science paper. Also this oligo and this method was used by Dr. Silverman's group last year to identify XMRV in prostate secretion. The prominent difference is that Emory group used nested PCR, but WPI group used only one round PCR. We will wait for few months and see if someone use exactly their condition of two rounds of PCR and without any change to find any positives.
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    On a general note, I'd recommend that for editing any WP article pages or contributing to discussions on WP Talk pages, a Username is set up. That way, only the username is displayed in the article History or on the Talk page, rather than the contributor's IP.

    If a contributor is editing from a dynamic IP and finds themselves blocked from editing at some point in the future, other editors or potential editors within the same IP range may also find themselves unable to edit.
  17. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Edited by WP Editor Keepcalmandcarryon
  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Like two wolves and a sheep negotiating over what to have for dinner?

    Revision history of Xenotropic murine leukemia virus-related virus

    Revision history of Whittemore Peterson Institute
  19. fred

    fred The game is afoot

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    :D:Sign Good one:
  20. leaves

    leaves Senior Member

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    Wow when you look at those talk pages it certainly seems like on has to fight for each improvement. I hope that with the new evidence our attackers will have less arguments.

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