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The Wall Street Journal - June 23rd

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Jun 23, 2010.

  1. VillageLife

    VillageLife Senior Member

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    http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/

    JUNE 23, 2010, 6:05 PM ET
    Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection?

    By Amy Dockser Marcus


    A report that a respected NIH expert supported an association between the XMRV virus and chronic fatigue syndrome is causing a buzz among CFS patient activists, researchers and clinicians.

    According to a press release issued by a Dutch magazine, one of the slides presented at a recent workshop in Zagreb by Harvey Alter, chief of the infectious disease section at the NIHs clinical center, supports the link between XMRV and CFS reported last year in Science.

    This is significant because studies published later by other groups have produced conflicting results.* Alter is a well-known figure in the infectious-disease world; his research helped lead to the discovery of the hepatitis C virus.

    Its what weve been waiting for, says Annette Whittemore, head of the Whittemore Peterson Institute in Reno, whose scientists were investigators on the Science paper. Her team went out to celebrate the report, although she says, I want to see [the data] published. She tells the Health Blog she is hoping that confirmation of her scientists work will help drive more funding to XMRV research.

    A spokeswoman for the NIH said she couldnt comment on the report because the data havent been published yet, though she confirmed the presentation slides are authentic. Alter didnt respond to a request for comment.

    The May 26-27 workshop was organized by the International Plasma Fractionation Association and the Paul Ehrlich Institute and hosted by the Institute of Immunology (IZM). To see Alters presentation, click here, then follow subsequent links to the available presentations and to the Alter presentation in session 4.

    A slide titled Comments on the Agent Du JourXMRV, says the data in the Science paper are extremely strong and likely true, despite the controversy. The slide indicates that the association of XMRV with CFS is very strong, but causality not proved.

    In addition, Alters presentation estimates the incidence of XMRV in the donor blood supply at 3% to 7% versus the nearly 4% cited in the Science paper.

    And at the bottom of the slide, in a bullet point that launched all the buzz, this statement: We (FDA & NIH) have independently confirmed the Lombardi group [which published the original Science paper] findings.

    Updated: This post has been updated to add syndrome to the headline.
     
  2. Otis

    Otis Señor Mumbler

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    That's great - she's reading the comments it would appear.
     
  3. LJS

    LJS Insert Witty Comment Here

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    I think this says it all and confirms that this is a real leak:
    So it's now unofficially official, haha
     
  4. V99

    V99

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    I don't know how the WSJ has covered this in the past, but I think they have been great recently. This is awesome.
     
  5. bullybeef

    bullybeef Senior Member

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    Yeah, it is really as to why the WSJ has really got its teeth into this subject. I wonder why?
     
  6. helsbells

    helsbells Senior Member

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    Excellent stuff, thanks for posting villagelife - had just found it on google, should have known someone was already on the case over here :Retro smile:
     
  7. Sing

    Sing Senior Member

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    Well, as has been noted on other threads, there is the possibility of "a ton of money" to be made--on large scale testing, treatments, vaccines....Health care is a thriving, hugely profitable business in the US, so new developments, newly identified pathogens to treat, represent business opportunities. Maybe that is why the WSJ is tracking this. They want to be ahead of the wave; business investors do--get in ahead of the crowd, so they can seize an investment opportunity--that is the thinking!
     
  8. Mark

    Mark Former CEO

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    So the only people allowed access to this info for now are in-the-know investors and (extremely) patient activists and advocates? No major news coverage anywhere else it seems, so it would appear the entire global media agrees this information is not yet suitable for public consumption. The media are not a conspiracy though, they just happen to all think alike regarding this question.

    When it does finally appear in print, I might finally start to have some doubts and concerns about the way the whole thing is going...was it not John Lydon who said "the written word is a lie"? Disinformation now in preparation...:worried: Can we handle the truth? :confused:
     
  9. Esther12

    Esther12

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    I think it could be that the media are a bit wary of the whole topic, especially as no-one's making official statements. There doesn't seem to be much public interest in the possibility that 8% of them could have a retrovirus.

    Maybe a lot of people just see it as another of those health scares you read about but never happens?
     
  10. muffin

    muffin Senior Member

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    Email contacts for the WSJ including Amy Marcus: amy.marcus@wsj.com; wsj.ltrs@wsj.com; newseditors@wsj.com; a.murray@wsj.com
    Since Ms. Marcus jumped on this story and did a great job, continue to email her with updated on CFIDS and XMRV. Solid background information on CFIDS and XMRV should also be provided to her and ALL other journalists who show an interest (and no negative bias) in CFIDS and XMRV. Stress that XMRV affects EVERYONE and not just the CFIDS sick. Also note that it is probably in the blood supply (We all KNOW it is in the blood supply - but still need that hardcore data to state that). I also cite www.oslersweb.com and Hillary Johnson's WHY speech which gives a great overview of the history of CFIDS/CDC and the first retrovirus. Give as much background and sources (use the web addresses) possible.
     
  11. muffin

    muffin Senior Member

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    Major News Orgs

    It may well not be in the major news orgs because WE did NOT inform them. Email the press release on the FDA/NIH findings, the blood supply release and give background info - cite www.oslersweb.com

    WE need to inform the media. At least give them a head's up so that they can start research and be able to hit the ground and run with a fast breaking story - and one that has major, deadly implications.

    CFIDS is real. XMRV exists (they KNOW it is in familial aggressive prostate cancer). So do our jobs and inform the media with good solid information.

    IF WE DON'T OPEN OUR MOUTHS AND INFORM THE PRESS, THEN WHO WILL??????
     
  12. LJS

    LJS Insert Witty Comment Here

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    Guys relax, once it is published the media will jump on it just like they did with the science paper.
     
  13. *GG*

    *GG* Senior Member

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    $$$$$$$$$$$$$$$$$$$$$$$$$$$$$
     
  14. muffin

    muffin Senior Member

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    It only helps our cause if we also send on info to the media. So, keep emailing to the major/local TV/newspapers/journals/etc.
    If you provide a reporter with a good story and enough background info (make it easy for them) then it might make it more likely that they will go look and then write. These people are on deadlines and always on the hook for good ideas. So, give them the good ideas and make it easy for them to get the background info (website addresses, attachments of documents, etc) and to write up a story that plays to our favor.

    I did just this with a credit card scam. I did the research, found the contacts, and gave as much information as possible including my mother's situation in being scammed. About 10 minutes after I sent off this really heavy email with facts galore, the reporter wanted me to go on TV and be interviewed. I basically did her work for her.

    This also worked when I was trying to sell my house in a horrible market (and I did sell it). I came up with an idea that worked for ME (so that I could get my website of my house into the paper). I emailed off the idea and the reporter contacted me. Bang, there was my name in the newspaper with a bit of a twist on my idea. The reporter was frantic and on deadline and I needed to get rid of a house. Worked for both of us.
     
  15. Mark

    Mark Former CEO

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    What I have found absolutely fascinating and illuminating in the last couple of days is looking at what is going on wider on the internet, google news, and especially Bad Science, regarding this. The WPI-XMRV stuff has been very slightly discussed on a BS thread but very little and at an extremely superficial level that indicates they really haven't even begun to look at the sort of information we have seen here.

    BS isn't really focused on anything unless/until they suspect it of quackery, of course, so it isn't their focus, but anything tangential to us has become of interest to them since the Myhill case kicked it all off; they started threads on CFS etc as a result.

    What I have found so extraordinary is that they really know next to nothing about it. They are just beginning to have the sort of conversations we had 9 months ago, with the difference being that they started off saying "this looks really weird I am deeply sceptical this will almost certainly prove to be nothing"...combined with a bit of annoyed muttering about the breaches of protocol...but with this latest news I am actually starting to find their dawning realisation of how wrong they have been extremely funny. Some of it is comedy gold actually (to a believer, at any rate). And the best comment of all was someone who said that if the WPI turn out to be right, there may have to be an investigation into the PR folks' "conspiracy theories" after all! So one can easily see how the dominos are set up here...

    I'm nervous about playing all that up though. If we shout loudly about all those other issues right now, and say "go on, publish, we demand it - and when you do, your house will fall down" - it's hardly an incentive for them to hurry the process along. On the other hand, if it drags on another week or two and nothing has gone into print, the time will have come for some major action, it will be time then to hit with everything we've got IMO. There is this tiny part of me that still fears this will be strung out and spun somehow, even though I really can't see their escape hatch myself.

    So anyway my sense of it all is: No, it's not that the media are wary, and it's not that people see it as just another health scares...it really is that this is one of millions of blog subjects swilling around, there is masses of other news too, there's crises left, right and centre, and our not-so-little story really hasn't reached their attention yet. They have glanced it over, made a mental note, and moved on. Nobody sees it as something to get a scoop on. If anybody did dare publish it as a scoop, they would have the story of the century, but unless we feed it to them that won't happen. We could almost choose our favourite paper and give them the story if we wanted to. Not the Guardian though...I've pondered the Independent as they were pretty much the best on the Science study as I recall (and I think they're way the best paper in the UK anyway by the way, nowadays).

    No, there's no grand plan there, you discover when you look at any incident in detail. Just a whole load of people, doing what they do - mostly, waiting to be told what to think...
     
  16. Mark

    Mark Former CEO

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    Or in other words: Once the FDA/NIH paper goes to print, then yes the press will be all over it, and then it's important that we feed the journalists good quality referenced information indicating what the findings might mean (we know they do mean that but we have to say might because they can't be expected to take in all the background in such short order) in the worst case scenario (the one we've known about for the last 9 months). Inevitably what gets in the papers will be massively downplayed and cautionary, compared to the reality, but the more we do to point them at the truth, the better their stories will be.

    If the FDA/NIH don't go to print sharpish, then we really need to knock hard on the right journalistic doors to get someone to scoop it. Although I'm not sure if anyone does investigative journalism in the UK these days, anyone got any clues which paper might have the balls for this? We can't let the Daily Mail take the scoop on this one, surely?

    And a final summing up: Just do not underestimate how far ahead of the game we are here, and how little the majority of 'the system' knows of what is coming. Outside of us, and the ME blog sites, the world has no clue about any of this. The whole thing will come as a total shock. Chance favours the prepared mind.
     
  17. Sing

    Sing Senior Member

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    Great posts, Mark and Muffin! I feel energized, heartened and illuminated by what you've said.
     
  18. Mark

    Mark Former CEO

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    Love the sig Sing, oh so true.

    Remain calm. Speak the truth. And we shall overcome.

    :D
     
  19. muffin

    muffin Senior Member

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    In the US Media Hype Everything

    Our media will hype anything and everything to get ratings and readers/watchers. If the President had a pimple popped, the media would be on top of that hyping and explaining acne. But that's the US.

    There is a ton of stuff going on right now so we do have competition. That's why we need to explain how critical this finding is. Make sure to note that XMRV is known to cause an aggressive prostate cancer. What other cancers and diseases are also caused by XMRV?

    Just keep informing and emailing. And do continue to hit the Federal health orgs requesting/demanding more funding for CFIDS and XMRV.

    The CDC is basically out of business as far as CFIDS and XMRV goes. It no longer matters what their replication study comes up with. The CDC has been discredited time and again and not just on CFIDS.
     
  20. Esther12

    Esther12

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    And very simplistic, obvious quackery at that.


    I just stumbled upon this thread of random people, most of whom are deeply uninterested in the XMRV news: http://www.digitalspy.com/forums/showthread.php?p=41259221

    Maybe a useful insight into the general mentality of people towards this sort of news.
     

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