There’s a bit of a heated discussion going on online, one that conflates conflicts about the nature of medical debates with the nature of journalism. If this sounds stultifyingly boring, it is, but some of the underlying issues are not.
It starts with a piece in the Chicago Tribune by Patricia Callahan and Trine Tsouderos. The award winning pair have been among the few reporters to consistently “get it right” about alternative medicine. Tsouderos is well-respected among critics of quackery for her willingness to look at the science and report the truth, without resorting to false balance*. Callahan and Tsouderos’ investigation into the dangerous and deceptive practices of alternative autism doctors, practices that include chemical castration, won cheers from those screaming out against this unethical mistreatment of children. These reporters have got the bona fides amongst both journalists and scientists.
Stories like the one on fake autism treatments have a lot of background. To those of us who have been following the stories and writing about them for years, the stories and the players are well known. The best ongoing critical discussions of alternative medicine have been going on in the blogosphere rather than print media. Blogs such as Respectful Insolence, Neurologica, and Science-Based Medicine have been tracking alternative medicine trends for years and doing it well. The success of these outlets are in no small part due to the fact that they are written by medical experts. These writers may not have formal training (or even informal training) in journalism, but they know medicine and they know how to write in a compelling style.
In general, bloggers write frequently, often on the same or related topics. This serialization of sorts, along with the convention of linking/hypertext allows bloggers to reference rather than rewrite when discussing complicated topics such as autism, lyme disease, or homeopathy. Many mainstream journalists are aware of these tools and would like to use them, but they may face technological and corporate constraints (and I welcome any comment from journalists that may help clarify this point).
In their recent piece Tsouderos and Callahan recently got it right about so-called chronic Lyme disease (CLD), and they are catching some flack. I’m going to use my powers as a blogger here to refer you to more in-depth discussions of Lyme disease, but I’ll give you a quick run-down. Lyme disease is caused by a bacterium spread to humans by tick bite. When treated properly with antibiotics, it resolves completely. When not treated early, it can cause a number of problems ranging from annoying to serious, including joint pain, heart, and neurologic problems, which also respond well to antibiotic therapy. Over the last several years, a number of doctors and patient-advocacy groups have recognized something called “chronic Lyme disease” which is a collection of various symptoms that are attributed to Lyme disease despite absence of any evidence of ongoing infection.
It is difficult to explain briefly the intense animosity advocates of CLD have for the medical establishment. They often state that doctors are actively involved in a conspiracy to deny “proper” treatment, and have convinced politicians to take legal action to circumvent and even punish those who uphold medical consensus. The real victims here are suffering patients who are taken advantage of by so-called Lyme-literate doctors, doctors who are willing to ignore medical evidence and give dangerous and costly treatments to people who don’t need it.
It is in this context that the Tribune piece should be viewed, and it is this context that was ignored by critics of the piece, especially Paul Raeburn of Knight Science Journalism Tracker, an excellent website, and Pam Weintraub, an editor at Discover Magazine. We’ll explore each of their critiques separately.
Raeburn’s beef with the Trib piece appears to be a “lack of balance”:
This is what happens when reporters make up their minds about a controversial story before beginning to write. In a Dec. 8 Chicago Tribune piece on Lyme disease, reporters Patricia Callahan and Trine Tsouderos write that while Lyme disease is real, so-called “chronic” Lyme disease, said to last for years, “is an illness that might not even exist.”
That’s an arguable point, and a fair conclusion to come to–if the writers came to it fairly.
When it comes to truth, it doesn’t matter how Paul Raeburn perceives the process. A medical fact is a medical fact, and while he may not like the way they came to their conclusion, the truth remains. He goes on to make a number of somewhat fair criticisms of the piece, arguing that many ideas were left unattributed, although as I pointed out above, to give the entire back story to this debate would be nearly impossible in a single piece. He accuses them—unfairly, I think—of writing a hit piece with little real reporting:
It goes on. Note that none of this is attributed. The reporters are saying, in their own voice, that chronic Lyme disease belongs squarely with all kinds of risky and unproven cures for cancer and other ailments. With that kind of opening, most readers don’t have to wade any further through the reporting to know what conclusions the story is going to come to. The writers have conveyed their sneering skepticism without, so far, more than a few shreds of reporting. And none from anybody we might consider an expert on the disease.
“Sneering skepticism”, in the face of well-known, previously documented quackery is not a fault.
Raeburn displays a profound ignorance of the Lyme debate and of the players involved, in favor of a desire for false balance:
Again and again, Callahan and Tsouderos give far more space to advocates making questionable claims than they do to experts who refute those claims, allowing the serious case for chronic Lyme disease, whatever that might be, to be buried under the dubious claims of advocates.
There are many researches working on Lyme disease, but so-called chronic Lyme disease is a different thing altogether. It is by definition a condition that isn’t really Lyme disease, but a bunch of symptoms that someone feels like calling Lyme disease despite no evidence of infection. There is no serious debate here, and the advocates who Tsouderos and Callahan quoted are the major players—they got it right.
The heart of Reaburn’s agenda seems to be a form over substance:
A far better approach would have been to report the evidence, pro and con, and to quote the most persuasive advocates for and against chronic Lyme disease–not the least persuasive. And to give both sides equal time to speak.
The piece did not just find “the least persuasive” CLD advocates in order to make a point—that is the reality out there. The expert consensus is that the thing being called CLD has nothing to do with Lyme disease, subjects patients to harmful treatments, and distracts from real work on Lyme disease. It’s a conclusion that I as a clinician share. I’m not a “real” journalist, and if real journalists approach all stories like Raeburn, I’m glad I’m just a hobbyist.
Pamela Weintraub’s criticism is a bit different. It was apparently her concerns that prompted Raeburn to write his piece, and she chimed in in the comment section. I’m going to quote her at length, because she is an editor and presumably a stickler about these things:
The problem, as I see it, is that these journalists have conflated two issues: One issue, a look at the predators abusing patients carrying the diagnosis of chronic Lyme disease, is a worthy endeavor. The second, an examination of the debate over why symptoms persist after short-term antibiotic treatment, is also a worthy endeavor. But these issues –thought interrelated because a dearth of knowledge leaves a vacuum for predators– are not the same.
In order to examine the possible reasons for chronic symptoms after treatment for Lyme disease, one would need to quote credible, university-based scientists on the range of views and interpretations. Instead, the journalists quote scientists with one view, but when it comes to balancing that view, they attempt to do so by quoting the very criminals, predators, and crazies they are trying to expose. The implication, of course is that these sources must provide the counterweight because there ARE no credible, university-based scientists who disagree with the contention of the article, or the experts quoted. Of course, this is blatantly untrue –and one does not need to look far or even make many phone calls to find a range of views among credible academic experts with high visibility in the peer review.
These reporters have not conflated anything. The predation and other nonsense that accompanies the chronic Lyme debate is the story. This is a fairly classic moving of the goalposts, one which, perhaps, Tsouderos and Callahan might have avoided by citing more sources, but I doubt it. The science is settled: vague and protean symptoms in people without microbiological signs of Lyme disease do not have Lyme disease and are not aided by long-term antibiotic therapy. The “other side” here is populated by predators and wackos, not by credible university scientists. Those scientists have already done the work and published it.
As clinicians, we see many, many patients with difficult or impossible to explain symptoms, a problem frustrating to doctors and horrifying to patients, and looking for better way to diagnose and treat these patients is a daily occurrence. It is also an area wide open to quacks, who want to call it chronic fatigue syndrome (which really exists, but can be overdiagnosed) or Lyme disease (same), etc.
Either these reporters started out with an agenda –and thus were satisfied to ignore like-weight experts with alternate views—or else they failed to realize these experts exist. In other words, either they were biased or they were incompetent.
And it is too bad –because an expose on predatory practices in this arena is sorely needed.
A final note: The issue of Lyme disease, in general, is confounded by co-infections carried by Lyme ticks, and by a range of Lyme disease strains, only recently described in the peer review. Some of our top scientists now suggest these strains may present variably in terms of symptom sets, in terms of testing –and yes, perhaps even in terms of length of treatment to kill. It is too bad that these journalists failed to attend the recent Institute of Medicine conference, Lyme Disease and Other Tick-Borne Diseases: The State of the Science, or even watch the webcast, where many of the nuances and complexities were discussed by the top experts in the world.
This is simply wrong. Weintraub is either intentionally or erroneously confusing the debate over so-called chronic Lyme disease and the real medical problem of Lyme and other tick-borne disorders. She is in over her head. Medical science cannot rule out that some of the patients currently carrying the diagnosis of “chronic Lyme disease” may actually be found to have a problem related to tick-borne infections, but on the whole, this does not appear to be the case.
Weintraub goes on to appeal to the authority of her own experience and to the lack of journalistic expertise of bloggers, all of which is simultaneously quixotic and boring. She and Raeburn are right about one thing though: the problem here is one of journalism. Science journalism that insists on the convention of false balance over truth isn’t worth reading.
*I was going to footnote a bunch on what I mean by “false balance”, but then I ran out of steam. If it’s not clear by now, let me know and I’ll clear that up.