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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Amy Docker Marcus

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by bullybeef, Jul 2, 2010.

  1. bullybeef

    bullybeef Senior Member

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    Has anyone thought to contact Amy Docker Marcus from the WSJ?
    http://online.wsj.com/public/resources/documents/SB111263120089597221.htm

    I felt compelled to: amy.marcus@wsj.com

     
  2. Otis

    Otis Señor Mumbler

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    Bravo bullybeef. I sent her an email when the funny-business came out with Alter's paper to see if I could get any clarification on the status of the acceptance of the NIH paper given that she was the source of the initial report of that report. I heard nothing back but it's time to try again!

    Thanks, Otis
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Bullybeef-

    Thanks for writing to the WSJ. This is crucial for us. One point- this was an oversight i am sure- you said ME is fatal and of course it is sometimes fatal. Maybe you could email her a quick correction. people grab onto the slightest errors we make to discredit us and i hope WSJ doesn't do this.
     
  4. muffin

    muffin Senior Member

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    I too thanked her

    After her first article I sent an email to her address and thanked her for a great article. I also told her that this could be (should be) a huge story and one that will affect billions of people and that she should stay on top of it and keep digging.

    Smart woman. She is on top and seems to have contacts in place. I bet she does come out with the first real heavy-hitting story on just what is going on behind the curtains at CDC and why.

    So, keep thanking her for a job well done. We need the smart journalists who seem to understand that this could be one of the biggest news stories in medicine for quite some time. Never know what this little bugger XMRV may cause cancer wise and diseases wise.
     
  5. Recovery Soon

    Recovery Soon Senior Member

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    I just sent this to her (subject heading- PULITZER):

    Ms. Marcus,

    Thanks so much for your continued pursuit of the XMRV connection to CFS, and the recent suppression of science.

    I know you are being bombarded by patients, so let me be brief:

    I was a very successful television writer/producer (specific networks included in original email) and in terrific physical shape, when one day I abruptly felt flu symptoms nearly four years ago.

    Thousands upon thousands of wasted dollars, and untold suffering later, I am still very sick, and have been forced to leave that prestigious/lucrative career behind me.

    I cannot tell you all that I have sacrificed throughout this nightmare- it would bore you- and depress me.

    However, I do want to say from one media person to another that you are on the trail of something huge.

    I believe you are poised to be the Bob Woodward of an appalling Government scandal, which has left millions sick, forgotten, branded and blamed.

    The thought of blood contamination on this scale makes Watergate look like a traffic offense.

    If you continue following this trail to the end, and continue speaking truth to power, I believe you will send shockwaves around the world with what you uncover, and help end massive suffering on a scale that is simply unimaginable.

    After all- That's why one becomes a journalist in the first place, isn't it?

    In the years that I have had this disease, it is clear we are at a tipping point.

    Please Keep Pushing.

    Best Wishes,
     
  6. muffin

    muffin Senior Member

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    RS: Great letter and the truth. If she keeps on this she really well could be on track for a number of the big media awards. In addition to helping billions of people worldwide. What a coup that would be for her.
     
  7. jimbob

    jimbob ME/CFS84-XMRV+

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    excellent bullybeef and recovery soon! I hope you convinced her to stay on board. bullybeef hang in there buddy, the scales will tip our way soon. We all have such horrific tales to tell, don't we! I'm 9,584 days since acute onset, enough is enough!!!
     
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Recovery, nice to meet a fellow Fourth Estate warrior.

    Tina
     
  9. bullybeef

    bullybeef Senior Member

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    Thanks for the heads up, justin, I see now I should have said "in some cases ME is fatal..." Completely noted, and I've already sent Ms Marcus a correction email.

    And thanks for the kudos everyone, after reading that Amy has already reported on other medical matters previously, and won a Pulitzer, I'd like to believe she's in this for the long haul.

    Her interested may make it difficult for Dr. Alter to backtrack on his original statement/slide, and if he does it would scream a conflict of interest with the whole department (CDC and HHS). In other words they all have very plausible reasons why they don’t wish to find XMRV. I keep using the phrase malfeasance, because that is exactly what is going on here, and you'd have to be blind not to see it.
     
  10. Recovery Soon

    Recovery Soon Senior Member

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    Ditto Tina.

    I really think this reporter is standing at the edge of a journalistic gold mine. She seems to get that from her articles thus far. I just hope she is willing to go the distance.

    I also think she's the one to help get us to 60 MINUTES- which is the real goal in my eyes. That happens- Game Over.

    Just think about the Whittemore Angle- Mother saves sick daughter and millions of others while fighting a Government coverup- which threatened the Nation's Blood Supply.

    Erin Brockovich only saved a town- and THAT won an Oscar.
     
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yeah, I sent letter to 60 Minutes in January. No response. But a lot more news now.

    I did mention " How could a lab less than three years old find this virus but not the CDC that has been studying this illness for over twenty years?"

    And I agree, the personal drama story of Anne is a great angle.

    As for a movie, I think Peterson's story is more compelling. He is a true hero.

    Tina
     
  12. Recovery Soon

    Recovery Soon Senior Member

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    I know Dr. P was the first on the scene- but I'm not sure I know the major bullet points of his story- at least the movie worthy parts.
     
  13. ixchelkali

    ixchelkali Senior Member

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    So, do we get Sandra Bullock to play Annette Whittemore in the movie version? ;)
     
  14. boomer

    boomer Senior Member

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    Yes, yes Sandra Bullock should be annette.
     
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Anyone heard from Amy lately?

    Tina
     
  16. Dreambirdie

    Dreambirdie work in progress

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    I sent a letter in November, with two pages of links and contacts for Nancy Klimas, Donnica Moore and the WPI.
    They never responded either.
     
  17. muffin

    muffin Senior Member

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    Let us hope and pray that Ms. Marcus

    is going deep and getting more dirt on all of this. Feed her as much solid info as possible. Send her medical documents, links to good/valid stuff, etc. The more we can give her without overdoing/overwhelming her, the better background and info and tips to contact for another great story by her.

    She is out in front and we need her to stay out in front. She wins when this thing hits and we win having her do a great job.

    Let's hope that she gets great info and hit the next one way out of the park.
     
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Of all the stories in Osler's Web, I found Dr. P's most compelling. He is the biggest hero among us for he has no family members who have the disease, but his sacrifices in reputation, career, and financial as well as personal were for his patients. And it has been a very long battle.

    Tina
     
  19. Cort

    Cort Phoenix Rising Founder

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    Yes, and he stuck in Incline even after Cheney left - with his finances in a mess (which Cheney's leaving made worse) - Doesn't seek the limelight, he seems pretty private......and so committed to his patients. He was the quiet hero.
     
  20. kwietsol

    kwietsol

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    Yay for Dr. P! May he soon get the recognition he so deeply deserves.
     

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