Journalists have risen to the occasion in the wake of the Trump election, navigating greater challenges than ever, and investigating more doggedly and more responsibly than ever before. Twitter is abuzz with constant revelations brought about by smart people asking smart questions. There must be at least one health journalist at the New York Times, one at the New Yorker, one at the Washington Post (if permitted by editors), one at every major news organization who can begin to ask questions.
I’ve thrown many of these unresolved questions out there for public consumption for any journalist to pursue, to use as a starting point for getting at the truth that has to lie between such extremes as the typical Lyme patient complaint that “My body is slowly dying and doctors told me me it’s all in my head until I was diagnosed with Lyme and treatment has helped me feel better, but I keep relapsing,” and the typical public health official’s unhelpful dismissal of “If she ever did have Lyme, then she has been cured and may be experiencing mild lingering symptoms — counseling may help. Or she may never have had Lyme and could be the victim of charlatan doctors tricking her into believing she does. She should see a different doctor and try to relax.”
Last year at this time, the CDC website advised patients whose symptoms linger after treatment to pursue an alternative diagnosis and “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.”
At that time, the CDC suggested that post-treatment Lyme disease symptoms may be the result of the infection having triggered an “auto-immune” response. Last December, I asked a CDC official why “auto-immune” was written in quotes on the CDC website; this person told me that autoimmune diseases are real and spreading, and that she would recommend that the quotes be removed from the term on the CDC web page, as many hypothesize that Lyme disease infection may trigger the onset of an autoimmune disease, which could be the “missing link” for chronic Lyme disease patients.
The page has been revised, but it now states that “the cause of [post-treatment Lyme disease syndrome] is not known,” warns against the treatments that help many Lyme disease patients regain their health, and does not suggest autoimmune dysfunction, nor does the CDC recommend any investment in federal research to resolve the mysteries associated with Lyme. It simply discourages treatment regardless of whether that treatment helps patients or not. This strikes me as odd — certainly because I am one of those patients, but even if I weren’t, I’d expect people who work in public health, who practice medicine, and who cover medical practice for a living to seek explanations. Nope. It doesn’t happen.
Some Common-Sense Questions for Some Future Pulitzer Prize-Winning News Organization of Record
- Why are the same stories told over and over again, but decades-old questions about the nature of this disease almost never investigated? The New York Times did an excellent job of bringing multiple perspectives on the disease to light in 2013. This groundbreaking series of co-presented articles should have set a precedent, but turned out to be a one-off. Why is no one digging into the contradictions of this disease?
- Lyme — not to mention other tickborne diseases — is poorly understood and poorly funded. As discussed above, the CDC estimates that about 300,000 Americans contract new cases of Lyme each year, compared to approximately 44,000 cases of HIV and up to a few thousands cases of Zika; and yet, the federal government invests an average of $25 million per year for Lyme research, $3 billion for HIV/AIDS research, and in 2016 spent $1.1 billion on Zika research. How do priorities such as these serve the public interest? Why does an epidemic that newly infects 300,000 people every year receive less funding than many rare and better-understood diseases that do not mysteriously cause frequent disability while frequently going undetected by existing diagnostic tests?
- When Lyme disease affects so many people in the United States, why is the federal government doing so little to research it or even talk about it, yet gives so much attention to far less common diseases, such as Zika and West Nile virus, swine and avian flu, and even SARS? (Lyme has been prevalent throughout the history of these diseases, all of which drove headlines, and is only now beginning to gain some attention.)
- Why do so many patients who are treated with Lyme disease go on to become sicker and sicker, even as public health officials and medical doctors say deny that it is happening?
- When Lyme disease can affect the brain — just like closely related syphilis — and cause mental illness, why are patients who are diagnosed with Lyme and who display symptoms of mental illness dismissed as crazy rather than treated for a physical disease that can produce mental illness as a symptom, not a cause?
- What is the role of inflammation and potentially of autoimmune dysfunction, as related to Lyme disease infection? Why is NIH not investing significant resources in this if the CDC suggests that such a process could be the basis of the mystery of chronic Lyme?
- Why did the CDC last year suggest that persisting post-treatment Lyme symptoms may be due to a related autoimmune disease, and then eliminate that mention from its website?
- Why did the Canadian government pass legislation stating that “the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness”?
- Why did the Department of Health and Human Services, to which the CDC belongs, draw overt correlations between the historic HIV/AIDS epidemic and the current Lyme disease epidemic at an unpublicized federal tick-borne diseases working group meeting, while publicly downplaying the severity of tickborne diseases for decades, finally issuing a new spin many months later with an urgent recommendation for the release of a new Lyme vaccine?
- Why is there a “Lyme war,” with the CDC and infectious disease doctors on one side, claiming that all cases of Lyme are easy to diagnose and permanently cure, and patients, Lyme disease specialists and some lawmakers on the other side who claim that many people become chronically ill to the point of disability unless they are provided ongoing treatment?
And a related question news producers, editors and writers need to ask themselves: Why do writers always defer to the opinions of the health authorities over the first-hand experiences of thousands of patients, even as individual patients’ stories are frequently reported respectfully? Does this extraordinary, overt contradiction in reporting not raise questions among any journalists? Why not?
I ask this with full knowledge that it likely will lead you to think I am a “conspiracy nut”; however, I urge you to consider this anyway, because history has proven that federal agencies and respected institutions do not always have the public interest in mind — and that is part of the reason, I was taught, we have an investigative press corps.
Consider the 50-year-old Tuskegee syphilis experiment that the CDC administered; the sugar industry’s influence over Harvard University scientists in the 1960s whose misinformation is still ‘common wisdom’ today; the U.S. Census Bureau’s 50-year-long false denial of having been complicit in the internment of Japanese Americans; inhumane psychological experiments on invalid people at Washington, D.C.-area hospitals; a variety of potentially unethical actions undertaken by the FDA, as reported by Scientific American; stunningaccusations made by a cohort of CDC scientists that the agency “is being influenced by corporate and political interests,” etc.
None of this is meant to suggest any sort of clandestine operations; however, all of these are real, thoroughly documented and reported examples of historic events in which federal agencies were not reliable sources because of internal interests being conducted at the private citizens’ expense. Time and again information promulgated by federal offices has proven after the passing of time to have been unreliable. Therefore, other sources must be considered. Journalists from the New York Times and the Washington Post should understand this now more than ever before.
CNN, MSNBC and Fox News have 24 hours of time to fill; surely, all of them could dedicate time to a true investigation of an epidemic that is unfolding in real time if a small local news station in New York was able to do so. Don Lemon, Anderson Cooper, Sanjay Gupta, where are you? Glenn Greenwald? Anyone? Is investigative reporting reserved exclusively for salacious political stories?
What does it say about the state of journalism when Dr. Oz is the only person reporting nationally on controversies surrounding an epidemic that affects over 300,000 American people every year and renders many of them disabled or otherwise ill for years, or even for a lifetime?
I implore journalists from major news organizations to begin to ask long-ignored questions about the nature of this disease, and why it is handled as it is handled. It’s not going to go away on its own, and as it spreads, it’s bound to touch your lives if it hasn’t already.
David Michael Conner is a freelance writer in Washington, DC, who frequently writes about Lyme-related issues and the media. On Twitter, he’s @Artistlike .