Journalists have a unique and vitally important role in informing the public, particularly when trusted authorities neglect to do so adequately. The nation’s public health demands greater investigative reporting related to Lyme disease for reasons discussed below.

As discussed here, Lyme disease is a complex, variable illness that frequently involves multiple coinfections transmitted by ticks to human beings. Lyme can be difficult to detect for a variety of reasons, and a great deal of controversy exists regarding whether and how Lyme disease may persist (chronic Lyme) in some patients, the severity of Lyme disease presentation, and the role of medical regulators and other groups in addressing Lyme as a public health emergency.

Most Lyme disease-related news stories discuss:

  • How Lyme disease is contracted (via ticks)
  • Lyme disease symptoms (variable)
  • Lyme disease prevention
  • Celebrity patient stories
  • Patient stories
  • Misdiagnosis; comparison/contrasting with multiple sclerosis and other diseases mimicked by Lyme

More investigative Lyme disease-related news stories are needed. These could and should discuss:

  • Reliability of Lyme disease diagnostic tests
  • Lyme disease coinfections; specifically, diagnosis and testing of Bartonella, Babesia, Erlichia, anaplasma, micoplasma, rickettsia and others zoonotic diseases
  • Divide among medical practitioners and patients
  • Research funding disparities (e.g., $23-25 million allocated by the NIH annually to investigate tick-transmitted Lyme disease, which affects over 300,000 Americans each year, and which (rarely discussed) can progress to full disability; compared with $622m-$1.1 billion to research the insect-transmitted Zika virus, which has been identified among 544 Americans as of May 27, 2016, and none of whom contracted it within the United States)
  • Refusal of CDC personnel to speak with media about Lyme disease

Screen Shot 2016-05-28 at 9.16.03 AM

A Challenge for Journalists

Imagine if Woodward and Bernstein, after receiving a tip about the Watergate scandal, simply called the White House and asked, “is Richard Nixon complicit in criminal activity?”

What answer do you think they would have been given?

Imagine if the Boston Globe, after receiving information about institutional protection of child sexual abusers by the Vatican, simply called the Vatican and asked, “does the Vatican support child abuse?”

What answer do you think they would have been given? What if journalists of historic importance and social responsibility only published quotes from assumed authorities as their official story to the American public? To date, this is how nearly all journalists have handled Lyme disease – and they are missing the story.

Responsible, ethical journalists do more than call and quote official sources.

Few of us challenge federally issued information about any health condition; however, the prevalence of Lyme disease and the below-the-radar political controversies demand immediate attention. Journalists should address commonly ignored but significant aspects of Lyme disease from an objective perspective in the interest of discovering and delivering both sides of the Lyme disease conversation as objectively as possible.

Following are some questions and considerations that uncommonly investigative journalists should pursue.

  1. How objectively accurate are Lyme the disease diagnostic tests that are recommended by the Infectious Diseases Society of America (IDSA) and endorsed by the U.S. Centers for Disease Control and Prevention (CDC)?
    1. Challenge: Rather than asking this question of the CDC or IDSA and reporting their responses, conduct due journalistic research by investigating current peer-reviewed medical literature, which does not necessarily agree with the official story.
  2. Is there evidence of ongoing conflicts of interest among IDSA leaders?
    1. Challenge: Read about the 2008 antitrust investigation filed by then-Attorney General of Connecticut Richard Blumenthal which “uncovered serious flaws in the IDSA process for writing its 2006 Lyme disease guidelines” before reporting quotes from IDSA or CDC leaders.
  3. Why were the IDSA Lyme disease treatment guidelines removed from the National Guidelines Clearinghouse federal database early in 2016?
    1. Challenge: When quoting the IDSA or IDSA-affiliated professionals in the context of Lyme disease, acknowledge that the federal government recently removed the IDSA’s Lyme disease guidelines from its database and consider why this was done and what, if anything, it says about the organization’s interest in addressing Lyme disease as a public health threat.
  4. Despite the 2008 antitrust findings and despite the IDSA guidelines having been removed from the NGC database, why does the CDC continue to endorse the IDSA’s 2006 Lyme disease treatment guidelines?
    1. The National Guidelines Clearinghouse, a project of the Department of Health and Human Services’ Agency for Healthcare Research and Quality, mandates that all medical guidelines must be reviewed at least every five years to account for ongoing medical research and new discoveries–which is particularly important for poorly understood diseases such as Lyme disease. Why has the IDSA refused to review its criteria from 2006 until they were unlisted from the NGC in 2006, and why does the CDC continue to recommend 10-year-old treatment guidelines? This is unique to Lyme disease.
  5. Given the prevalence of Lyme disease, why is relatively so little federal research money invested in discovering more about the disease’s pathology, diagnosis, and effective treatment?
    1. Lyme disease is the third most prevalent infectious disease in the country according to the CDC, and the second most rapidly spreading bacterial infection. Its pathology (see below) is not well understood, and researchers have stated that more research is needed. Yet, the federal government allocates very little to Lyme disease research relative to the disease’s prevalence and severity for unknown reasons. And of that small amount, government transparency and accountability expert Jenna Luche-Thayer determined that nearly $12m was misappropriated for the creation of articles that marginalize Lyme disease patients rather than used, as is required by law, to commission objective research studies.
  6. What are your sources?
    1. Infectious disease experts frequently interviewed by the news media about Lyme disease discredit reports by patients and physicians, commonly repeating certain themes that warrant follow-up questions but in nearly all cases are quoted and reported as absolute fact. These include:
      1. “All the best available research debunks chronic Lyme disease.”
        1. Ask for citations of this research, and note whether or not the researchers are affiliated with the IDSA. Also, more importantly, note the conflicts of interest statement at the end of the cited journal articles. In our experience, the majority of articles cited by “debunkers” disclose that primary authors often serve as paid expert witnesses in Lyme disease-related court cases and are paid by various for-profit medical diagnostic and device companies, which may present a significant conflict of interest. For example, an individual who is paid by a company that develops pharmaceutical treatments for neurological disorders or arthritis can be said to have a financially vested interest in allowing progressive Lyme disease to go uncured, as this inevitably will cause serious nerve and joint pain and dysfunction, requiring treatment.
      2. “Lyme disease specialists prey upon people who are ill or who have psychological problems and charge them exorbitantly marked up supplements that they don’t need and that can harm them.”
        1. This is stated often–too often in our experience. There have been cases of medical professionals preying upon desperate Lyme disease patients by selling various alleged remedies, devices and concoctions, and there have been cases of medical malpractice on the part of those treating Lyme. Such cases apply across all medical disciplines, and may be more prevalent among Lyme disease patients precisely because patients suffer such severe symptoms and receive such poor care for general medical practitioners that they will try anything and will pay anything to feel better. The root of the problem is that there is an obvious need for greater medical attention to Lyme disease patients, but given the stigma and general lack of awareness, as well as critically outdated treatment guidelines, patients are neglected and shop around for anyone who will respect them and who they hope can help them. When quoting an expert (note: usually an affiliate of IDSA–perform your journalistic duty and ask for and confirm professional and paid affiliations when quoting sources) who cites harrowing anecdotal evidence of a patient who was maltreated or especially misdiagnosed, exercise journalistic ethics and look into 1) whether or not this story is based in reality; and 2) how many patients have been effectively treated by Lyme disease specialists and how many patients were misdiagnosed with other diseases before being correctly diagnosed with and treated for Lyme disease. Use journalistic discretion to all available findings, not only those that are recounted by purported experts.
      3. “The two-tiered ELISA and Western blot test are 100 percent sensitive in patients with late-stage Lyme disease.”
        1. Ask for citations of multiple published medical studies, as there is great variability among conclusions. We believe that the two-tiered testing process is only approximately 50 percent sensitive; however, the CDC claims that it is 100 percent sensitive, citing a single 2002 study as the basis for this claim.
  7. What are your affiliations?
    1. Many experts quoted in the news media about Lyme disease are affiliated with the Infectious Diseases Society of America–which makes sense given that Lyme disease is an infectious disease. However, affiliated experts should be identified as having ties to the IDSA, just as experts who are affiliated with the International Lyme and Associated Diseases Society usually are identified by their affiliations.
    2. Experts with IDSA affiliations–particularly those who hold IDSA offices or who are featured on the IDSA and affiliate websites such as MedPage Today–should be able to answer the following questions when “debunking” chronic Lyme disease:
      1. If the best-available evidence disproves the existence of persisting Borrelia burgdorferi, can you provide me with sources to substantiate this claim? Note: Sources should be peer-reviewed research articles published in medical journals and not opinion statements published in peer-reviewed medical journals. Opinion articles by IDSA affiliates Paul Auwaerter and Gary Wormser usually are cited as “conclusive evidence,” “the medical consensus” and “disproving” persistence of Lyme disease. If provided with such references, ask how and why they negate findings of persister forms of Borrelia bacteria.
      2. The CDC website hosts a transcript of a briefing by researchers to the NIAID (see below), in which these experts state that persisting Lyme disease has been found in vitro, in animals including non-human primates, has been found in connective tissue following antibiotic treatment, and these experts recommend increased funding and research efforts, including the development of improved diagnostic tests. CDC publications from 1999 also state that chronic arthritis and neurological disorders occur in patients who are not treated in the early stages of Lyme. What sources debunk these findings? Note: Again, if sources are provided, determine whether the authors, which may include Auwaerter or Wormser, have official affiliations with the IDSA. If they do, disclose this information and note criticisms of the organization and the unlisting of its practice guidelines from the federal database by reason of being based on outdated research and non-compliance with federal statutes. 
  8. How would you explain the stories of so many patients who were diagnosed with Lyme disease, treated for Lyme disease according to IDSA-written and CDC-endorsed treatment practices, and whose symptoms persisted and worsened over time? Are all of these patients mentally ill? If so, how do you explain the consistency among their symptoms? Are they physically ill? If so, with what? If you don’t know, shouldn’t greater resources be invested in Lyme disease research?
    1. IDSA-affiliated spokespeople frequently claim that chronic Lyme disease has been proven not to exist. The CDC describes what it calls “post-treatment Lyme disease syndrome” (PTLDS) and recommends, when all else fails, that those who are suffering “share your feelings. If your family and friends can’t provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time.” Many Lyme disease patients regard this advice as patronizing, condescending, and in denial of their lived experiences. The CDC also states “The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well.” Yet, patients diagnosed with chronic Lyme disease typically report a consistent and gradual decline in health and well being over years without treatment. A 2014 survey of chronic Lyme disease patients found that chronic Lyme disease patients report a poorer quality of life than patients of congestive heart failure, lupus, and other severe illnesses.
    2. fig-1-2x
  9. So in the case of patients who had been diagnosed with Lyme disease, based on laboratory tests, and whose same Lyme symptoms became progressively worse over time–is it only a coincidence that they had Lyme disease, which you say is cured following treatment, and also another disease that coincidentally causes the same symptoms that are typical of Lyme disease?
    1. The CDC suggests that patients who were diagnosed with Lyme and treated for Lyme, and then subsequently experience a progressive worsening of the same symptoms associated with Lyme, probably are experiencing symptoms caused by another disorder. This would suggest that these patients had Lyme disease at one time and coincidentally have another undiagnosed illness that causes the same symptoms. Consider investigating the likelihood of this happening.
    2. Many patients report that they went to a great number of doctors for many years, many of them misdiagnosed with multiple sclerosis, chronic fatigue, fibromyalgia, rheumatoid arthritis, and other diseases before finally testing positive and being treated for Lyme. One criticism of chronic Lyme disease is that Lyme specialists allegedly treat people for Lyme when they don’t have it, and thereby prevent the diagnosis and treatment for whatever other serious disease or disorder is causing their condition. But for patients who say, for example, they have had “every test known to man” and have “seen every specialist known to man,” before testing positive for Lyme disease, would you recommend that these people forgo Lyme disease treatment that they say makes them feel healthy again and instead continue seeking out doctors for a different diagnosis, even years after not receiving any diagnosis at all?
  10. How do you explain patients who say they feel better, and oftentimes whose families, friends and employers report that these people’s health improved, after months on antibiotics? Can this really be attributed to a placebo effect? 
    1. Many people have experienced remarkable improvement in well-being and functionality following prolonged antibiotic treatment, including those who had been previously misdiagnosed with multiple sclerosis. Yet, critics including the IDSA frequently claim that every such case is either imagined or pretended.
  11. So, should all first-hand patient experiences of worsening Lyme disease symptoms be discounted in preference of selected research about bacteria? Why is it not more likely the patients who say they are very ill are, in fact, very ill and that the science doesn’t yet understand why?
    1. If this is the case, do you agree that the federal government should be investing far greater resources in determining the cause of these severely limiting health problems?
  12. Why is it OK to treat acne and urinary tract infections with months or years of antibiotics, but not this specific infectious disease?
    1. The CDC and the IDSA recommend against prolonged treatment with antibiotics based primarily on 1) risks to the individual associated with taking antibiotics for more than 28 days; and 2) the risk of developing antibiotic-resistant “superbugs.” Yet, dermatologists regularly prescribe doxycycline–the same antibiotic used to treat early-stage Lyme disease–for months or even years. Urologists prescribe “long-term, low-dose antibiotics” for chronic urinary tract infections. Why do the cautions about prolonged antibiotic prescription apply to Lyme disease and not to other diseases–particularly when patients report that Lyme disease symptoms may render them unable to work and in constant agony, whereas acne, while it can be psychologically damaging, is by and large a cosmetic problem? Does this suggest that physical attractiveness and attendant self-esteem is a higher priority to federal healthcare regulators and practitioners than is the ability to function well enough to work, attend school, and maintain a reasonable quality of life?
  13. When citing anecdotal claims about patients who have been misled, mistreated, or otherwise taken advantage of by medical doctors who claim to be Lyme disease specialists, how do you account for patients who report otherwise?
    1. Experts who are critical of Lyme disease specialists (frequently called Lyme-literate medical doctors) often claim that all Lyme specialists defraud patients, personally sell them supplements and medical devices, and so on. When you are told this, investigate these cases and at the same time investigate patients who say they have been successfully treated by Lyme-literate medical doctors.
    2. Many LLMDs do not accept medical insurance because a number of medical doctors have been sanctioned by medical boards and then sued by medical insurers for not following CDC-endorsed IDSA guidelines.
    3. Consider something that neither the IDSA nor the CDC is willing to consider: Actual patient experiences. Apply your common sense to this question: Is it more likely that tens to hundreds of thousands of individuals, many of whom were at one time physically very active, are pretending to be or imagining that they are physically ill to the point of near-, partial- or full disability, all collectively with essentially the exact same symptoms and most of whom have tested positive for Lyme disease; or is it more likely that these individuals report that they are all ill because they are all ill? Ockham’s Razor applies: The simplest explanation is often the correct one. Ask yourself which is simpler:
      1. Once-active and healthy people who claim to have fallen ill and were diagnosed with Lyme disease have persisting Lyme disease.
      2. Once-active and healthy people who claim to have Lyme disease are complicit in a mass delusion, choosing to live severely limited lives and to spend great amounts of time and money pursuing medical care, diagnostic tests and treatments.
        1. That these people have some sort of antibiotic addition and will stop at nothing to be treated with aggressive antibiotics that often have severe side-effects but which, due exclusively to placebo effect, make them feel better despite these side effects.
        2. That these people willingly sacrifice relationships with their families and friends, and frequently halt their careers or schooling, in order to support their falsified story that they feel too ill to be productive.
        3. That researchers have become complicit in this massive scam, developing highly unusual stories about a bizarre microbiological entity’s many forms, which they falsely claim can evade or modify the immune system, risking their reputations with the publication of such unprecedented findings that are condemned by a medical organization which insists 10-year-old medical practice guidelines are based on the most current and up-to-date science.
        4. That disparate, desperate advocacy groups throughout the country have formed to support this collective mythology, with people (such as the one writing this) dedicating countless hours to convey the reality of this disease through logic, reason, and abundant published, peer-reviewed, high-quality evidence, to no avail.
  14. Why is there a trend of states passing legislation to allow medical doctors to use discretion when treating Lyme disease with antibiotics rather than rigidly enforcing CDC-endorsed IDSA guidelines?
    1. growing number of states have resorted to passing laws to protect medical doctors who treat Lyme disease sufferers based on medical professionals’ reluctance to treat people with Lyme disease for fear of being persecuted by regulators–even as the IDSA guidelines have been determined to be outdated and not in compliance with federal statutes. States, essentially, are protecting patients and the doctors who treat them from the IDSA, which begs further questions.
  15. Is the culture of “debunking” chronic Lyme disease well founded?
    1. Articles such as this one by VICE News make claims such as “the best available research debunks chronic Lyme…But for patients desperate for answers about symptoms they don’t understand or don’t want to understand, a group of doctors, who may mean well, have made that research easy to overlook.” Is this claim substantiated by the best-available research? Among many other failures of journalistic ethics in the cited story, detailed here, a cursory review of PubMed shows evidence of “persister” strains of Borrelia burgdorferi bacteria in vitro, which does not prove the existence of “chronic Lyme” in living creatures, but which suggests it is likely and which certainly warrants further investigation. To report conclusively that chronic Lyme is “debunked” is a biased statement. Further, while this information is not commonly cited, following are quotes from a transcript of an expert briefing to the National Institute of Allergies and Infectious Diseases (NIAID) hosted on the CDC website. Among these quotes are multiple references to documented persisting strains of Lyme disease bacteria, including in non-human primates; recommendations of an alternative, ongoing application antibiotic treatment based on clinical presentation (versus blood labs) of persisting Lyme symptoms; an acknowledgement of “chronic arthritis and neurological symptoms” from 1999; an admission of “very little information” known about persistence of Lyme disease (e.g., not a conclusive “consensus” that “debunks” persisting Lyme, as is commonly stated); and a recommendation for ongoing research. Considering all of this stated information, why is chronic Lyme commonly described as having been conclusively “debunked,” and why are so few resources dedicated to learning more?
  1. How should I follow up?
    1. This is a question to ask yourself. A particular note of interest: When publishing stories about Lyme disease, pay attention to reader comments. It is likely that many and possibly a majority of readers will attest to the reality of chronic, life-affecting Lyme disease and state appreciation for the rare recognition of it. It is equally likely that a small number of individuals (for example, the individual who uses the name “Chronic  Lyme Cult Awareness” on Disqus and who administers a Facebook page called “Chronic Lyme and Morgellons Imagination Station”) will “troll” the comments section and aggressively deny claims, stating repeatedly that the concept of chronic Lyme has been “disproved” by “the consensus,” that chronic Lyme is “antiscience,” that Lyme specialists are “snake-oil salesmen” and so on. It has been alleged that some of these individuals may be under the employ of anti-Lyme organizations. When we contacted this individual through Facebook, s/he offered to connect us directly with experts who could debunk chronic Lyme disease–which strongly implies that this is not a “random Internet troll,” an individual acting of his or her own accord, but rather someone who has a direct affiliation with purported experts who make an effort to “debunk” Lyme disease through the media. Consider reading carefully through reader comments to determine whether readers may be leads for other useful information, and ask those who make claims of a “consensus” “debunking” chronic Lyme for references. In our experience, those references usually lead back to Auwaerter, Wormser and other IDSA-affiliated spokespeople’s opinion articles.

Case Study: Don’t make these easily avoidable reporting mistakes

The VICE article “If You Think You Have Chronic Lyme, Most Doctors Think You’re Wrong” is a case study in reckless health journalism. The article is built on a foundation of bias; its author does not qualify expert commentary as being affiliated with the IDSA, an organization with clear bias, as determined by an antitrust investigation by a state attorney general and by refusing to review and update its treatment guidelines until forced to do so earlier this year; uses flawed logic to assert false claims; performs no fact-checking to support (easily disprovable, or at least arguable) claims made by the quoted expert–and that’s the tip of the proverbial iceberg. Some specific mistakes made by this story’s author that journalists should attend to in their own reports:

  • 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 havedied 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 itspopularity 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?

5 Comments »

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s