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New York Times Published: July 14, 2010 Delay in Release of Study prompts outcry

Discussion in 'General ME/CFS News' started by pollycbr125, Jul 14, 2010.

  1. pollycbr125

    pollycbr125 Senior Member

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    Delay in Release of Study on Chronic Fatigue Syndrome Prompts an Outcry
    By DAVID TULLER
    Published: July 14, 2010

    http://www.nytimes.com/2010/07/14/health/14fatigue.html?_r=2

    Researchers at the National Institutes of Health and the Food and Drug Administration, citing a need to re-evaluate their data, have delayed publication of a new study believed to provide evidence of a link between chronic fatigue syndrome and a little-known retrovirus.



    The study, already peer-reviewed, was supposed to appear in the prestigious Proceedings of the National Academy of Sciences. The delay has sparked an outcry on blogs and social networking sites among chronic fatigue patients, who are desperate for answers about their debilitating illness and fear that important scientific data are being suppressed.

    A cabal of top government administrators with a habit of heavy-handed, anti-science manipulation of peer-reviewed science ordered the delay, Hillary Johnson, author of a book about the history of chronic fatigue syndrome, alleged on her Web site, OslersWeb.

    Federal officials said publication was delayed because the findings contradicted those of the Centers for Disease Control and Prevention, which conducted its own study on chronic fatigue and the retrovirus, known as XMRV. The C.D.C. study, which found no connection, was initially also held up for reassessment because of the discrepancies, but was eventually published on July 1 in the journal Retrovirology.

    A spokeswoman for the National Institutes of Health declined to comment in detail, but provided a statement from Dr. Harvey Alter, an author of the still-unpublished study and an N.I.H. infectious-disease expert. He said, My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete, adding, Our goal is not speed, but scientific accuracy.

    Word of the findings from the N.I.H. study spread rapidly last month when a Dutch magazine quoted Dr. Alter as saying that his research team had found a high rate of XMRV infection among patients with chronic fatigue syndrome. Dr. Alter reportedly made the statements at a blood safety meeting in Zagreb, Croatia.

    Dr. Randy Schekman, editor in chief of the Proceedings of the National Academy of Sciences, said last week that he expected the matter to be resolved within weeks, although he would not discuss specifics of the study or the journals review of it. The journal, he added, had been inundated by e-mails from people with chronic fatigue syndrome begging us to release this paper.

    The debate over XMRV began last fall, when the journal Science published a study reporting that two-thirds of blood samples from 101 chronic fatigue patients showed evidence of infection with the retrovirus, compared with less than 4 percent of 218 healthy controls.

    According to the C.D.C., at least one million Americans are believed to have chronic fatigue syndrome, marked by disordered sleep, cognitive problems, headaches, joint pain and profound exhaustion. The illness has no known cause and has frequently been dismissed by doctors, researchers and the general public as psychosomatic or psychiatric in nature.

    Retroviruses, like H.I.V. and XMRV, store their genetic material as RNA but convert it to DNA to replicate within host cells. Since XMRV was first identified four years ago, several studies have linked it to prostate cancer, although other research has failed to find a link. Whether the retrovirus plays a causal role in this or any disease remains unknown.

    The emerging research has caught the attention of the blood bank industry. Canada recently began barring people with chronic fatigue syndrome from donating blood because of concerns about possible XMRV transmission. The AABB, formerly known as the American Association of Blood Banks, issued a similar recommendation last month.

    A confirmed link between chronic fatigue syndrome and XMRV could spur thousands of patients to demand treatment with antiretroviral medications. Although some drugs used to treat the human immunodeficiency virus have demonstrated XMRV-fighting properties in the lab, they have not been clinically tested for this use.

    Nonetheless, Dr. Jamie Deckoff-Jones, a physician in Santa Fe, N.M., has been blogging to an eager audience about the improvements she and her daughter, both given a diagnosis of chronic fatigue syndrome, have experienced while following a regimen of H.I.V. medications.

    Im taking antiretrovirals in an attempt to save my life, she explained in an e-mail message. I dont have five years to wait around while the scientists and politicians try to figure it out.

    Since the report last year in Science, however, three other published studies, like the new C.D.C. paper, have raised doubts by failing to replicate the findings. The contradictory findings have been attributed to factors like how chronic fatigue cases have been selected and the difficulty in identifying XMRV infection because of a lack of standardized testing protocols.

    The Science study was conducted by the Whittemore Peterson Institute for Neuro-Immune Disease, a research center at the University of Nevada, Reno, along with the National Cancer Institute and the Cleveland Clinic. Annette Whittemore, founder and president of the institute, faulted C.D.C. researchers for historically focusing on stress and other psychological factors as major causes of chronic fatigue syndrome, rather than possible infection.

    Theyve been working on chronic fatigue syndrome since the mid-80s, and yet we still dont have any answers from the C.D.C., said Ms. Whittemore, whose daughter has the illness.

    Stephan Monroe, director of the C.D.C.s division of high-consequence pathogens and pathology, said the agency believed that infectious agents could be one of many possible triggers for the disease but that no pathogen had yet emerged as a primary cause.

    He said he was not surprised by the current uproar among patients. This is a very well-informed and highly connected patient and advocacy population, and whenever theres any new information, its circulated widely, he said.
  2. dsdmom

    dsdmom Senior Member

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    "According to the C.D.C., at least one million Americans are believed to have chronic fatigue syndrome, marked by disordered sleep, cognitive problems, headaches, joint pain and profound exhaustion. The illness has no known cause and has frequently been dismissed by doctors, researchers and the general public as psychosomatic or psychiatric in nature."

    It always gets me when they seem to miss out on a couple of big points....how about immune dysfunction and nervous system dysfunction? I swear these journalists make it sound like we're just tired and need to take some advil for the joint pain.
  3. VillageLife

    VillageLife Senior Member

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    Yep we are highly connected and well-informed, so watch out!! :victory:
  4. caledonia

    caledonia

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    That's bogus information - it was more like a day or two, not "eventually". But other than that, I think this is a great article summing up the state of things.

    And that's right - we are CFS patients: hear us roar!
  5. Otis

    Otis Señor Mumbler

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    Watch out is right! :Retro smile::Retro smile::Retro smile:
  6. kdeneris

    kdeneris

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    It would be great if as many people as possible would log into the NY Times (you have to register, but it's free) and email this article to everyone they know. If the article makes the most emailed list, it will be widely read, even by people who don't know and don't care about CFS. This might be a good thing to announce on PR's emergency action email system, to get as many people as we can emailing it.
  7. serenity

    serenity Senior Member

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    Ne York Times - that is pretty good! i like that! keep it coming!!!
  8. Otis

    Otis Señor Mumbler

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    Has anybody found a way to comment or contact David Tuller. He's probably hiding on purpose. :) :)
  9. Dainty

    Dainty Senior Member

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    He said he was not surprised by the current uproar among patients. This is a very well-informed and highly connected patient and advocacy population, and whenever theres any new information, its circulated widely, he said.

    I love it! :D
  10. pollycbr125

    pollycbr125 Senior Member

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    Yep post it on the net and its spread in seconds like a virus ;)

    oh the irony :D
  11. dsdmom

    dsdmom Senior Member

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    David Tuller has a cdc email address.

    This may be the same David Tuller - freelance journalist with lots of hands on experience with the CDC. Note the cdc email address - which makes me sort of stop and think a bit.

    http://www.wkconline.org/index.php/seminars/speakerpage/?sid=1035

    David Tuller is a free-lance journalist based in San Francisco. From 1988 to 1997, he was a reporter at the San Francisco Chronicle, where his beats included health policy, occupational health, and gay and lesbian issues. While on leave from the newspaper, Tuller spent two years in Russia and wrote "Cracks in the Iron Closet: Travels in Gay and Lesbian Russia." After leaving the Chronicle, he served as health editor at Salon.com, where he remains a contributing writer. Tuller is also a frequent contributor to ScienceTimes, the Tuesday health and science section of The New York Times, and regularly travels to Eastern Europe and former Soviet republics to lead journalism training seminars. He just completed a three-month Knight Foundation journalism fellowship at the Centers for Disease Control and Prevention in Atlanta, where he studied epidemiology, traveled to Jamaica and Pennsylvania as part of CDC teams investigating disease outbreaks, participated in SARS preparedness planning, and generally got in the way. Tuller was a founding board member of the National Lesbian and Gay Journalism Association.
    (415) 864-4584
    dnt9@cdc.gov
  12. V99

    V99 *****

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    This line, right at the top, would make some people think that Alter found something in his study, that made it look like the result's were suspect. This is clearly the journalist's interpretation.
  13. CBS

    CBS Senior Member

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    Carefully worded so as to avoid raising any doubt about the CDC's presumptions that CFS is a maladaptive psychological response to a common infectious episode.

    The more I hear this type of double speak, the harder it is not to wish this disease on someone like Mr. Monroe (one week and he'd be begging his colleagues to reconsider the ramifications of their biases).
  14. Wasbeer

    Wasbeer

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    I don't think I've ever seen The ME/CFS population described in such a positive way, especially by a government agency. Is the CDC trying to kiss and make up or is there a catch? :-0
  15. judderwocky

    judderwocky Senior Member

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    Dr. Randy Schekman, editor in chief of the Proceedings of the National Academy of Sciences, said last week that he expected the matter to be resolved within weeks, although he would not discuss specifics of the study or the journal’s review of it. The journal, he added, had been “inundated by e-mails from people with chronic fatigue syndrome begging us to release this paper.”
    +
    +
    +
    /score
    /dance
  16. serenity

    serenity Senior Member

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    i'm terribly excited, i liked the article. very informative of the situation, i could send this to friends & family to catch them up. & - it's the NEW YORK TIMES!!!! whoo hoo!!!! that means we're mainstream, finally! as long as that paper comes out positive, we should be golden!
    :)
  17. anne_likes_red

    anne_likes_red Senior Member

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    I was thinking the same thing - the CDC calling us that?
    ("Hysterical and troublesome" I wouldn't have been so surprised at!!)

    Welcome to the Forums Wasbeer. Nice to have another member from the Netherlands :)))
  18. V99

    V99 *****

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    I'm not trusting them, until funds are put into proper biomedical research, the Revised Fukuda is dropped, and they say that in no way is this caused, or sometimes caused, or partly caused, by psychological issues. Oh, and not until Annette Whittemore says they have done good.
  19. VillageLife

    VillageLife Senior Member

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    Yep, We need something positive, my dads been giving me a terrible time today, after 11 years of me being sick, he still doesn't *get it!*
  20. V99

    V99 *****

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    Sorry to hear about your dad, do you think this will change any, when the NIH/FDA paper is published? (If it is still positive, that is)

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