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FDA/NIH PAPER IN LIMBO; PATIENTS UNITE, by Mindy Kitei

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mindy Kitei, Jul 6, 2010.

  1. Recovery Soon

    Recovery Soon Senior Member

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    Or....We could hand out flyers/photos of Blood Transfusion Bags marked:


    CONTAMINATED- XMRV

    It's Out of the Bag
  2. redo

    redo Senior Member

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    Mindy, you should really think about freelancing an article for one of the big newspapers. British or US. I am sure you could get a decent hourly wage (you could use bits and pieces of old and new material and make it into an article) an you'd get the word out about the disease...
  3. Mindy Kitei

    Mindy Kitei

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    To Redo and others who have emailed me about pitching my articles to newspapers, etc.

    I pitched the two-part "Blood Feud" article to many online and print venues. No one was interested. But I wrote it anyway because I believed that the back story and the current story were important. That's also why there's a donate button on CFS Central.

    Mindy
  4. Tembo

    Tembo Australia

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    Thanks Mindy - your the best:Retro smile:Fantastic Article - Im so glad you are fighting for us.
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    I don't recommend picture of blood with statement saying it is contaminated. We have no proof. Strong circumstantial, yes, but no proof.

    Anyway, it would be best to say "It's in the bag" instead of "out of the bag".

    Tina
  6. Alexia

    Alexia Senior Member

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    Portugal
    Thank you Mindy for all your great articles !
  7. Sing

    Sing Senior Member

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    New England
    It turns out not to be about persecuting vulnerable people but about money, first and foremost. MONEY.

    Here is another strategy, to try to assess how much money will be saved, how much time lost to work saved, due to effective treatments of XMRV.

    Of course there is the loss-of-face hurdle in the meantime, but I am sure with all the other big news these days and their skill at spin, this shouldn't be too big a problem. They can still make themselves, those who blocked recognition and treatment for years, look like the heroes of the day.

    Great investigative work, reporting and advocacy, Mindy!
  8. bullybeef

    bullybeef Senior Member

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    Yeah sing, I don't why some cannot understand that the reason for a cover up would simply be for monetary gain. We would be talking billions, if not trillions if XMRV was proven a new disease entity.
  9. boomer

    boomer Senior Member

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    That is absolutely true. If the $ were there the information would come out.
  10. Recovery Soon

    Recovery Soon Senior Member

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    The print below (or on the back) would clarify the known facts.

    "Out of the Bag"- suggests the coverup, in addition to the transfer of blood to recipients (where it goes when it's out of the bag, obviously).

    "In the Bag" works on only one level (literal)- and not very well. (That was the first line I thought of and discarded.)

    But hey- creative opinions are subjective.
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    "contaminated" with a question mark would be good.

    My thought is that if someone is looking at the bag they would think, "That brochure said it was in the bag."

    Tina
  12. shiso

    shiso Senior Member

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    Thank you Mindy for your powerful reporting.
  13. Tembo

    Tembo Australia

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  14. Recovery Soon

    Recovery Soon Senior Member

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    I threw that around as well. Certainly would be safer for the time being.

    I'm a little biased towards the most assaulting reaction possible (which may or may not be justifiable with full disclosure at bottom).

    But yes, you do have to be careful.
  15. Sing

    Sing Senior Member

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    New England
    Bullybeef and boomer, Suzanne Vernon said yesterday on the webinar about three research projects that the Japanese are much more aware and motivated by the loss of money and productivity to their society because of ME/CFS. In the USA, she said, the loss of income or expense is thought to be about $25 million a year. But in our culture the research effort gets hung up on the individual egos of the researchers (or I would add, the departments and organizations led by such individuals). By the same token, we have also seen US research efforts move forward through the commitment of individuals too. Anyway, there was a discussion towards the very end of the webinar on those differences in culture with the Japanese. She found that they are really forging ahead now in a coordinated way with their research. And she and/or Kim both wished that our culture were a lot more motivated by a recognition of what is being lost in terms of productivity, $, through our illness (and I would add: then what it would cost to effectively research and treat our illness.)
  16. redo

    redo Senior Member

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    Sing, I guess you meant billions...
  17. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > In the USA, she said, the loss of income or expense is thought to be about $25 million a year.

    Actually Reeves said at least $9 billion in lost production, in the recent paper. I figure that's a lower bound.

    But anyway, a more interesting matter - do you know if they are doing any XMRV-in-CFS work in Japan? There's nothing Japanese listed on Cort's grand list of XMRV studies. Cort also has nothing for China but I thought I heard about something there - could be wrong (maybe it was something on XMRV in general, not pertaining to CFS).
  18. Lynn

    Lynn Senior Member

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    Suzanne Vernon said yesterday on the webinar that the Japanese are studying XMRV but have not published any papers as of yet. They are due to present something at the International XMRV conference in September.

    Lynn
  19. Alexia

    Alexia Senior Member

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    Portugal
    Thank you Lynn. That's great news, if they are using the CORRECT research methods !!
  20. Hope123

    Hope123 Senior Member

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    I haven't delved deeply into the methods of these papers but according to Dr. Leonard Jason's 2008 paper it is $18-26 BILLION, even with a lower prevalence of 0.42% of CFS. It looks like the 2004 Reeves paper only used direct costs (e.g. medical bills) whereas the Jason paper also included indirect costs (e.g. lost productivity, etc.). As many of us know, this is a huge amount as being sick with CFS for years-decades means we can't work and may have to rely on the government.

    Using ME/CFS prevalence data of 0.42 and indirect costs estimates from Reynolds et al. (2004), the direct and indirect cost of ME/CFS to society was estimated to be $18,677,912,000 for the community sample and $23,972,300,000 for the tertiary sample. These findings indicate that whether or not individuals are recruited from a community or tertiary sample, ME/CFS imposes substantial economic costs.

    http://www.dynamic-med.com/content/7/1/6

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