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No Evidence of Murine-Like Gammaretroviruses in CFS Patients . . . (Levy)

Discussion in 'XMRV Research and Replication Studies' started by kday, May 31, 2011.

  1. kday

    kday Senior Member

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    No Evidence of Murine-Like Gammaretroviruses in CFS Patients ... (Levy/Peterson)

    Excuse me if this was already posted.

    Here is a link to the full text (PDF): http://www.sciencemag.org/content/early/2011/05/31/science.1204963.full.pdf
  2. Timaca

    Timaca Senior Member

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    Thanks for posting this.
  3. kday

    kday Senior Member

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    Look, I am ok with negative XMRV articles, and I understand that XMRV may not be linked to CFS.

    But what I don't understand is... why is there a huge media blast suddenly? 296 articles in a few hours. There has been a bunch of negative studies getting little media attention. I'm not going to be the conspiracy theorist, but doesn't that seem abnormal?

    http://news.google.com/news/story?p...xpyMhMFtrwVXI4rx47qM&cf=all&scoring=d&start=0

    And why are the majority of news outlet calling it "Chronic Fatigue" instead of "Chronic Fatigue Syndrome" in their title?

    The media blast is conveniently not long before the 15th International Conference on Human Retrovirology.
  4. Mark

    Mark Acting CEO

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    Sofa, UK
    Quite right to highlight this, kday. Throughout the entire process, what's been most evident and most disturbing to me is the evident massive bias and manipulation of the media agenda around ME/CFS.

    Calling this sort of press campaign a "conspiracy" would seem laughable to the scientists involved, and to other jobbing scientists observing - to them, it's just standard professional practice to manipulate the media agenda, to network privately with contacts in the research world and at journals, to time and target their press releases in relation to political events in order to maximise the impact of the messages they want to promote, and to network with influential contacts in bodies such as the Science Media Centre who are able to control the media agenda in areas relevant to their research. Manipulating the media in this way, using the tools of power to do so, and doing all this in private through loose unofficial networks of contacts, is just part of the job. It would never occur to them to consider whether this kind of professional practice fits the definition of a conspiracy, and they probably never notice that it guarantees a bias in the scientific process in favour of those with the most power and vested interests. To them, it's "just the way things work".

    Because that's the next unofficial name change being used to manage ME/CFS, and the campaign to popularise the term "chronic fatigue" has been under way for quite some time now. It's a further evolutionary step in the trivialisation and obfuscation of the condition, and a further strategy to hide ME within an ever-larger and more confused cohort. It's best evidenced by White and Wessely's recent "Ethnic minorities are 'silent sufferers' of chronic fatigue syndrome", which found that there are 10 times as many of us (2.5 million in the UK) than previously thought, and prevalence is highest amongst ethnic minorities and those with difficulties with housing, finances, or family problems - not white middle class women as previously suggested. As the term "chronic fatigue" is being popularised, the numbers affected with what's still called "chronic fatigue syndrome" suddenly rise tenfold...and the significance of all those immune abnormalities and neurological problems becomes less and less within the ever-larger definition.

    Just as ME has become lost in the ME/CFS obfuscation, what we now call "CFS" or "CFIDS" is set to become lost in "chronic fatigue", a condition that does not require even immune abnormalities, let along neurological ones, but simply covers anybody who has been tired for 6 months or more. The game of Russian Dolls continues...

    Yup, I expect you're quite right that this timing is related. As I say, those involved will simply see this as professionalism on their part, they will completely fail to see the distorting effect of their own actions on the scientific process, and continue their lifelong policy of jeering at the 'losers' who failed to play those political games as effectively as them, and got trampled in the process. If they've spent their whole lives inside the fence, which most of them have, and never tried life from the other side, they will even be labouring under the illusion that their opponents could employ the same methods as themselves, and therefore this whole process is free and fair. Depressingly, from where they're sitting, it all looks fair enough.
  5. kday

    kday Senior Member

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    Thanks for the insightful post Mark.

    I am just afraid this is going to take a shot at the credibility of patients.

    All these 'chronic fatigue' articles portray us as a bunch of malingerers from my perspective. Why would they want to destroy the community yet again? And I know scientists and researchers read this forum, and I want to make this clear: I am not referring to XMRV or your study. I am referring to the way we are being portrayed by the media through a well-orchestrated, yet harmful, media blasts.

    If they think they need to get their point across by discrediting patients shame on them. If their actions are not intended to harm, perhaps they don't recognize the moral hazard that comes with them.

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