Lyme Wars: Journalists are Failing the Public

One can hope that such a story was naive and made a poorly informed decision to present the information as it has been presented. It may agree with certain mainstream views, but had VICE performed any level of journalistic effort, the article would tell a different, truer version of this story.
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According to the Society of Professional Journalists, "ethical journalism strives to ensure the free exchange of information that is accurate, fair and thorough. An ethical journalist acts with integrity."

Unethical journalism may be committed intentionally or by accident, but the resulting disinformation or misinformation can be potentially damaging either way. In the case of public health, the results can be disastrous.

An article by Sydney Lupkin, published by VICE News on May 18, is a troubling example of this.

The story, with its click-bait headline "If You Think You Have Chronic Lyme Disease, Most Doctors Say You're Wrong," is written in partnership with MedPage Today, which is the name of a publication by the Infectious Diseases Society of America. The IDSA, discussed in the VICE article, campaigns aggressively against Lyme disease research and against proper patient care. Curiously, on the MedPage Today site linked to the VICE article, the "all infectious diseases" page lists everything from Ebola to HIV and even the IDSA--but it does not mention Lyme or any other tickborne disease. This is a peculiar oversight given that the CDC names Lyme as the third most prevalent infectious disease in the country. In 2008, the Attorney General of Connecticut filed an antitrust investigation against the IDSA and determined a number of serious concerns.

Earlier this year, the National Guidelines Clearinghouse, a project of the Agency for Healthcare Research and Quality, HHS, in partnership with the American Medical Association and American Association of Health Plans Foundation, removed the IDSA Lyme disease guidelines because they were outdated and did not reflect the most current and best available research, and because they did not comply with federal regulations. (NGC qualifying criteria may be found here.) By contrast, the International Lyme and Associated Diseases Society guidelines have been accepted by the NGC and at present are the only guidelines made available via this federal database for medical practitioners.

The VICE article fails to present any of this information or any criticism of the IDSA's unusual practice related to Lyme disease. That is not a surprise given the authoritative voice afforded to Dr. Paul Auwaerter, who is identified in the article as being affiliated with Johns Hopkins University, but whose IDSA affiliation is not mentioned.

Auwaerter is the principal author of a number of published articles that support the bias against Lyme disease research and treatment that is evident in his statements that undergird the VICE story. He is given the starring role on the IDSA's Lyme page, as the IDSA presents two videos whose intention is to tell the story of chronic Lyme disease being a myth. Remarkably, Lyme disease is the only infectious disease on the IDSA website for which videos of this sort have been produced. Remarkably, the VICE article does not mention other doctors and researchers at Johns Hopkins University who are leading contributors to newer research proving that persisting Borrelia burgdorferi strains exist, not acknowledged by the IDSA and certainly not by Auwaerter because it contradicts his opinion. The VICE story does not mention that Johns Hopkins University as an institution has launched a Lyme Disease Center founded by JHU doctor John Aucott, who "has spent more than a decade studying the disease's potentially crippling effects." The article instead suggests that physicians who treat Lyme "are quacks, and that they're taking patients -- and their wallets -- for a ride."

This has to stop. People are too ill, and with the CDC projecting around 300,000 new Lyme infections among American people annually, the stakes are too high for unethical journalism.

From JHU: "As director of the new clinical research center, housed at Johns Hopkins Bayview Medical Center, Aucott has received an initial grant to lead the first prospective controlled study in the U.S. to examine the impact of Lyme disease on patients' immune systems and their long-term health. Known as SLICE (Study of Lyme Disease Immunology and Clinical Events), the study aims to understand why some patients develop post-treatment Lyme disease syndrome lasting months or years, while others do not."

Even if referring to "post-treatment Lyme disease syndrome," this acknowledges clearly that Lyme disease has a lasting, life-altering and sometimes disabling effect on many patients--something denied absolutely by the IDSA and Auwaerter. So many people are so extraordinarily ill, and the unproductive wheel spinning discussions that invoke the word "pseudoscience" dismiss entirely the reality of these patients and would have everyone who is experiencing a serious, devastating physically and cognitively disabling condition dismissed or institutionalized. This is unforgivable. It is tantamount to poisoning a growing number of American citizens through an infectious disease. Denying it is denying science, which is unforgivable for a researcher. Denying it is making patients suffer, which is unforgivable for a physician who has taken the Hippocratic oath: "utterly reject harm or mischief." Very ill people are being harmed by this mischief of Lyme denial.

The correct response to an epidemic like this, or even a disease with a lesser prevalence, is to investigate in pursuit of greater knowledge so that the public health risk can be controlled and patients' lives can be saved or improved, or at least fewer patients will develop the long-term conditions of this disease. Why is there such resistance to further investigation? According to the CDC, Lyme disease is the third most prevalent infectious disease in this country. Why would that not demand a greater investment into research? Why is the response instead to wage an intentional or accidental war of misinformation and patient blaming?

Inconveniently, as with the IDSA's outdated guidelines, the information provided both within those videos and in the VICE article is biased and in some instances false.

The VICE article:

-Does not disclose an apparent affiliation with the IDSA, whose position is positively supported and presented by the article's author.

-Falsely suggests--libelously, in fact--that Lyme disease specialists are charlatans who personally sell dietary supplements for profit, malpractice, and injure their patients. The fact is that many medical doctors are afraid to treat patients who have Lyme disease because of the persecution they suffer as a result.

-Presents the case of a woman who died after having received prolonged antibiotic treatment, but does not address any of the countless patients who recovered and became productive again after prolonged antibiotic treatment. Or those who have died as a result of medical negligence via the sort of denial VICE has promoted in its story.

-Mentions that the woman cited above "was tested and had no sign of Lyme," but mentions nowhere in the article that multiple studies have determined that the two-tiered IDSA-recommended tests are less than 50 percent sensitive, meaning that they result in false negatives for at least half of people who have Lyme disease.

-States "Case studies have shown that patients who are diagnosed with chronic Lyme and are later found to have other health problems, such as fibromyalgia." It does not state, however, that many, many, many individuals are diagnosed with multiple sclerosis, fibromyalgia, and even ALS have been later correctly diagnosed with Lyme disease and either regained their health or tragically died as a result of medical negligence related to anti-Lyme stigma. How is this tenable?

-Briefly introduces a reference to an improved Lyme disease test--but then immediately attempts to discredit and undermine its relevance by referring to its popularity among other researchers and practitioners. Popularity is not the same thing as legitimacy in scientific practice, even if it has taken on this role in the world of institutional scientific dogma.

-States "the best available research debunks chronic Lyme and the use of long-term antibiotics." This is a biased view that should not be presented as objective; it is clearly the view of the IDSA. It is commonly quoted with references such as this one--but note that the author in this and a bulk of similar references are the same individual, Paul Auwaeter, with the same IDSA affiliation. The NGC disagrees and as a result removed the IDSA guidelines, deemed outdated and not based on the best available research, from its database. Other practitioners disagree, and patients who have been brought to the brink of death or full disability, including such known individuals as Avril Lavigne, Ally Hilfiger and Amy Tan--whose stories are featured here--have experienced that this treatment has been effective.

-Fails to mention that a growing number of states, including Virginia, Vermont, Maryland and others have passed or are in the process of passing bills to protect doctors and patients from the harm caused by inhumane and outdated IDSA guidelines and to require medical doctors to disclose--as the VICE article does not--that the Lyme disease diagnostic tests are unreliable.

-Fails to mention that many high-quality, peer-reviewed medical journal articles published over the past couple of years describe and discuss "persister" forms of Lyme disease bacteria, which survive standard antibiotic doses and durations for a number of complex reasons, and which in vitro have been shown to be vulnerable to extended durations of treatment by common and less commonly prescribed antibiotics. While this has not been proven to date in in vivo studies, the research is important and compelling and should be provided for context in a responsible article. Of note, Paul Auwaerter, who in the VICE article states "there's really a scarcity of data to back up" the notion of persisting Lyme disease, is an author on a study called "Drug combinations against Borrelia burgdorferi persisters in vitro: eradication achieved by using daptomycin, cefoperazone and doxycycline." The study concludes, "these findings may have implications for improved treatment of Lyme disease, if persistent organisms or detritus are responsible for symptoms that do not resolve with conventional therapy. Further studies are needed to validate whether such combination antimicrobial approaches are useful in animal models and human infection." Yet in his video on the IDSA website, Auwaeter states that persisting Lyme disease "is not based on scientific fact." So, then, should we conclude that his own research documenting persistent organisms is not based on scientific fact? Was this study a foray into creative fiction writing?

It is curious, if only because it exactly reflects the political view of the IDSA yet is presented as a VICE story, that the IDSA is correct in its view because its view is similar to those of various other federal agencies and institutes, yet there is no mention of the National Guidelines Clearinghouse and the Agency for Healthcare Research and Quality at NIH, which have determined the IDSA guidelines fail compliance for well-substantiated medical guidelines and removed them from its pages, which are intended for use as references by practicing medical doctors, while the ILADS guidelines are fully compliant with all standards and are offered as the current best guidelines.

I hope, truly, that VICE and other news media outlets will conduct at least the bare minimum of cursory research when reporting on a public health crisis that affects over 300,000 more Americans every year, who have to bear thoughtless, fallacious and damaging inherently biased news stories.

This should not be a battle of ideologies or egos. Concerns about using long-term antibiotics to treat Lyme disease--such as the potential for developing "superbugs"--should be stated and the concern should be weighed against the public health consequences not only of not treating Lyme disease, but not investigating adequately in research to determine the true pathology, to develop improved diagnostics, and to seek treatment to quell this epidemic. There should be no battle of words or egos here. The stakes are too high.

One can hope that such a story was naive and made a poorly informed decision to present the information as it has been presented. It may agree with certain mainstream views, but had VICE performed any level of journalistic effort, the article would tell a different, truer version of this story.