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Hillary Johnson Chronicles Search for XMRV

Discussion in 'General ME/CFS News' started by ballard, Feb 1, 2013.

  1. ballard

    ballard Senior Member

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    Calling it one the "most bruising science debacles of the decade" Discover Magazine has published a lengthy article about XMRV and CFS by Hillary Johnson in the March 2013 edition.

    The article gives a fascinating behind-the-scenes look at the whole XMRV saga.

    The article is very favorable to people with CFS and is an exciting read.
     
    Roy S and Kati like this.
  2. ballard

    ballard Senior Member

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    There is an error in the above article that caught my eye. The article states that "A new, $10 billion research initiative to investigate CFS was launched in September 2011 at Lipkin's laboratory after multi-millionare Glenn Hutchins, a director of the Federal Reserve Bank of New York and vice chairman of the Brookings Institute, provided the cash and promised more money in the future should the investigation bear fruit."

    I believe the amount was $10 million over three years. Thank you Mr. Hutchins! :thumbsup:
     
    *GG* likes this.
  3. Kati

    Kati Patient in training

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    Ballard is there a link available?
     
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  4. ballard

    ballard Senior Member

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    Sorry, I can't see where Discover magazine has published the article on-line. I purchased it on a newsstand.
    $5.99 U.S.

    According to Wikipedia, Discover magazine has a circulation of 599,196 general interest science readers.
     
  5. Kati

    Kati Patient in training

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    Thanks Ballard, I will go check my local library :)
     
  6. barbc56

    barbc56 Senior Member

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    Have you thought about becoming a fact checker? Looks like it would be a match!!

    Barb
     
  7. Sasha

    Sasha Fine, thank you

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    Does Discover magazine accept correspondence? If so, there's a good opportunity for pointing out the gigantic mismatch in funding that ME gets versus other diseases.
     
    lilpink and alex3619 like this.
  8. Jemal

    Jemal Senior Member

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    10 billion would have been even greater :)
     
  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    I just read this eight page story which has about five pages of text. It's the longest article in the 76 page issue. I think Hillary did a good job concisely covering the XMRV saga. In small print on the cover it has just "The Chronic Fatigue Debacle Explained", then on the contents page "Chasing Chronic Fatigue", then "Chasing the Shadow Virus" at the beginning of the article.

    She starts "Scientific explanations for the rise of CFS cases, a phenomenon dating to the mid-to the mid-1980s, have mostly focused on viruses, but psychiatric theories have abounded, too, driven primarily by the Centers for Disease Control and Prevention, which promoted the idea that CFS was "hysteria" or hypochondria.

    Carl Zimmer has a long article in the issue titled "Interbreeding with Neanderthals". He did two blogs on XMRV which got many responses. Unfortunately the responses are now out of order and I'm not sure they are all still there. This is the last one with links to the previous one and other articles.
    http://blogsdiscovermagazine.com/loom/2012/09/18/the-slow-slow-road-to-de-discovery/comment-page-1/

    My response on the last one was --

    Mr. Zimmer, I'm 58 and have had ME/CFS for 42 years, and I have a question for you after responding to your query. Back when I was much healthier, I moved to Capitol Hill for over two years starting during the first Gulf War in 1991 because there was no one else volunteering there at the time to do the lobbying and other necessary advocacy. That was during the first retroviral research saga and there is definitely déjà vu now. I was appropriately diplomatic then, but the continued prejudice and abuse of ME/CFS patients since then requires more outspoken advocacy. My closest friend in DC died from ME/CFS this year. She was 52; at least she's out of her pain and misery now.
    Most of us just want a lot more good science ASAP. The XMRV saga should have at least happened much faster. Ironically it got us much needed recognition and the private funding of research is increasing greatly but it's still miniscule. The US government funding is outrageously not increasing. The published rituximab studies provide hope now for treatment and a bulwark against the BS from the psychological sophistry brigades.

    Your blog last year had some of the best comments I've seen. I was "nonchalant". Some of the UK press is at the same thing again at present.

    Sonia Poulton wrote a very good piece recently in addition to one last year and got a warm response. A couple writers are recycling last year's "blame the victim" by "playing the victim" propaganda and are getting criticism. Again, I prefer to be in the USA.
    http://poultonblog.dailymail.co.uk/...d-than-multiple-sclerosis.html?forumid=331851
    From elsewhere last year, "Dr. Racaniello said that when he used to question colleagues about chronic fatigue syndrome, they would argue that it was an imaginary illness." "Every time I asked someone about it, they would say it doesn’t exist, it isn’t a real disease, even as recently as the past year..."

    My question to you is what do you hear? Do you think we are making progress in the broader scientific community, etc.? Any suggestions?
    Thanks, Roy
     
    I'm wondering if all the good responses helped promote coverage in the magazine. Anyway, I hope Hillary made some good money for writing a good article. And I wish she would put her blog back up.
     
    10 BILLION? Yeah, I wish!
     
    lilpink, beaker, alex3619 and 3 others like this.
  10. VillageLife

    VillageLife Senior Member

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    Hi, I have just read the new article on XMRV / CFS written by Hilary Johnson.

    Brilliant!

    I have copied in a small piece from the end of the article.

    ----------

    Mikovits continues to believe a human retrovirus will be
    discovered eventually to lie at the heart of CFS. "I still see
    the footprints of a retrovirus there," She says. "In the
    Lipkin study, 3 percent of the controls and 3 percent of the
    CFS patients had an antibody cross-reactivity to something.
    It cannot be XMRV, since XMRV doesn't exist as a human infection. But it's very close."

    The possibility that Mikovits's prediction is correct is being explored. A new $10 billion research initiative to investigate CFS was launched in September 2011 at Lipkin's laboratory after multi-millonaire hedge fund manager Glen Hutchins, a director of the federal Reserve Bank of New york and vice chairman of the Brookings institute, provided the cash and promised more money in the future should the investigation bear fruit.
    (Lipkin identified the brain infections Borna virus in 1990
    and West Nile virus in 1999)

    "What's occurred in the last 30 years is criminal," Mikovits
    says today. "Mothers and fathers got sick, there children got
    sick." But with heightened attention patients are likely to
    get help soon.
     

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