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New Lyme Disease Study Reveals Strong Reporting Bias

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On March 31, the New England Journal of Medicine published a study that concludes, "In patients with persistent symptoms attributed to Lyme disease, longer-term antibiotic treatment did not have additional beneficial effects on health-related quality of life beyond those with shorter-term treatment." This study is a useful contribution to ongoing investigations of how to treat ongoing Lyme disease symptoms among patients who have received the standard 28-day course of doxycycline and continue to experience severe symptoms commonly associated with Lyme disease.

This study is also significant because, unlike the majority of Lyme disease-related studies published in peer-reviewed medical journals, it made international headlines in mainstream news outlets. Some publications that specialize in medical and health-related stories covered the story appropriately, such as Medscape, whose headline reads, "Post-Treatment Lyme Disease: Longer Antibiotics May Not Help." Others, perhaps most notably Forbes, created their own exaggerated version of the findings. Forbes contributor Steven Salzberg announced on April 4 that "Long-Term Antibiotic Use for Lyme Disease Doesn't Work, Study Finds." The headline is similar to the Medscape one, but the designation between "may not help" and "does not work" is extraordinarily important. That's just the beginning of Forbes's irresponsible reporting of the story.

It is obvious to anyone familiar with either journalistic ethics in general or Lyme disease specifically that Salzberg's story contains factual errors, gross misrepresentation of findings, and a lack of context that is vital to understanding the results of the study. A few points of primary importance:

  • In the originally-published story, Salzberg reported that approximately 30,000 new cases of Lyme disease occur within the United States each year. A reader quickly corrected this grossly incorrect number, citing the U.S. Centers for Disease Control and Prevention's (CDC) revised 2013 estimate of upwards of 300,000 annual cases of Lyme. This is a matter of basic, rudimentary research. Salzberg replied, "I'm not sure where the commenter gets her number of 300K, but that's not correct." He later admitted his mistake and updated the text of his story -- but did not indicate within the story that he had initially reported erroneous information or that he updated the story. This is a straightforward case of reporting misinformation and not acknowledging in the body of the story that it has been updated -- poor reporting.

  • While the newly-published study underwent rigorous peer review, its findings are obviously limited to the study's scope of investigation. The study investigated the efficacy of two antibiotics, doxycycline and clarithromycin-hydroxychloroquine, against lingering Lyme disease symptoms. While the findings show no significant improvements among the test subjects, this by no means can be construed to mean that "long-term antibiotic use for Lyme disease does not work." The study investigated only two of scores of available antibiotics, administered only over a limited "long-term" course of three months, and did not attempt pulsed antibiotic techniques or investigate or discuss Lyme disease coinfections, which may complicate treatment. The results of the study are valuable contributions to the literature, but they do not rule out the efficacy of other classes of antibiotics administered alone or in combination, the treatment is limited to three months when it is possible that longer treatment techniques may be necessary for those who have late-stage Lyme disease, and other treatment techniques need to be explored in a laboratory setting. Salzberg's interpretation of the study is wildly exaggerated and, simply put, incorrect.
  • The story is problematic in a great number of other ways, which are described and discussed thoroughly by readers in the comments section following Salzberg's story. My word count is limited here, and so readers should consider the well-researched and well-reasoned counterarguments put forth by readers.
  • I contacted Forbes Health Editor Matthew Herper as well as the general email address with these and many other specific concerns and asked that the publication publish a better-informed and more journalistically balanced article. To date, I have received no response.
  • This article and others like it are greatly concerning. Salzberg, both in the body of his article and in the comments section, asserts that he presumes to know better than both Lyme disease patients and the physicians who treat them about the pathology, presentation, diagnosis, and treatment of Lyme disease -- even when it is obvious through his writing that he is lacking even the basest level of knowledge about the disease. For reasons not disclosed, he has chosen one side of a complex political debate, and Forbes has given him a platform through which to attempt to influence readers with a poorly researched and even more poorly reasoned opinion piece. He presents the term Lyme literate -- often used to designate physicians who treat Lyme patients -- in a disparaging way, when his story is inarguably Lyme illiterate.

    This morning, the Bay Area Lyme Foundation announced that findings of a new study it funded, conducted by Stanford University researchers, reveal that certain strains of Lyme disease bacteria found in California may survive antibiotic treatment.

    "Many Lyme disease patients experience symptoms after treatment, and this study appears to help us understand why this may happen," said Bonnie Crater, Vice President and Science Committee Chair, Bay Area Lyme Foundation. "This study demonstrates the potential for effective treatment for patients with Lyme disease for whom routine antibiotics are not working."

    The foundation further notes:

    Although some studies have shown doxycycline can completely eradicate the bacteria that causes Lyme both in vitro and in vivo, conflicting studies have shown that doxycycline cannot eliminate all of the bacteria. In fact, previous laboratory research which studied a strain of B. burgdorferi persisters commonly acquired from ticks on the East Coast, identified additional drug candidates that can more effectively eliminate those persister strains than the current antibiotic regimen used for acute Lyme disease.

    Both studies -- the one published in the New England Journal of Medicine and the Bay Area Lyme Foundation-supported, Stanford-conducted study to be published in the peer-reviewed open-access medical journal Drug Design, Development and Therapy, are contributions to ongoing investigation into the highly complex and largely mysterious pathology of Lyme and associated tick-borne diseases. None of these studies is conclusive or definitive, and responsible and appropriate discussions of findings describe them in the context of the body of literature and, dare I say, in consideration of both patient and physician experiences, which should not be altogether dismissed, and especially by arrogant assumptions made by individuals who have little understanding of even the most fundamental and widely accepted aspects of Lyme disease.

    Forbes should qualify Salzberg's article as the opinion of its author, and should lend context to that opinion by disclosing Salzberg's personal and professional qualifications that enable him to position himself as an authoritative and definitive voice among the thousands of scientists who continue to investigate the disease. If it cannot justify Salzberg's definitive claims, then it should at the very least publish better-informed, more objective opinions by better-qualified authors.

    As well, all media outlets should reconsider the recent trend of publishing misleading and sometimes patently false headlines and stories based on the findings of singular studies. Medical research is cumulative, and few if any studies are ever so well designed, long-term and thorough that they, on their own without the context of the greater body of literature, can be interpreted as the final word on any complex medical condition and its treatment. To do this is grossly irresponsible, and can influence the public to make poor decisions about their health and the health of their children. Based on the sheer numbers, Lyme disease is an epidemic and no one -- and especially not Salzberg, whose misreporting is obvious and inarguable -- has enough research today to make a judgment call as broad and definitive as the one Salzberg has claimed.