The medium is not the message—is it?

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.

Weintraub continues:

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.

(Friend Orac has also added his thoughts to this issue.)

____________________

*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.

17 Comments

  1. Amen, Brother Pal. Amen. Truth has no balance. It is simply the truth.

  2. Facts do not require presentation of fantasy to be “balanced.”

  3. Do those fucke-uppes really consider Discover magazine to be legitimate journalism? Discover magazine is to science as Road & Track is to the automobile industry.

  4. There is a cartoon which addresses how scientists feel about science journalists. Perhaps not all science journalists, but those who put journalism ahead of science.

    http://partiallyclips.com/2008/08/19/tank-fish/

  5. Pamela Weintraub

     /  December 21, 2010

    I want to comment here, and respond in a different way than before: I myself had Lyme disease, which I contracted from my tick-infested property in Westchester County, New York. Largely because of the controversy surrounding the disease, I believe, the diagnosis was not considered by doctors when it should have been –even as I developed peripheral radioneuropathy, dysphasia, and other clearcut objective and uncontroversial signs of Lyme disease along with the overwhelming symptoms of headache and fatigue. When finally I was given a test and diagnosed, years later, initial treatment worked for me; I got better. However, I relapsed after treatment. For a number of years I continued to be retreated and to relapse, like clockwork, after each retreatment until finally, my recovery was sustained.

    The papers on treatment that you cite are not as black and white as you insist –and many of the scientists I interviewed told me this. In fact, results were actually in line with my own experience. For instance, of the three studies, two, Fallon and Krup, both found significant and improvement after retreatment for the symptom of fatigue –the main condition Krup selected for, and a major complaint of patients like me, who fail treatment. Despite this finding, the studies did not recommend this treatment because of the side effects of the antibiotic.

    It turned out that I also had babesia, a common coinfection in the tick with Lyme disease –again, a diagnosis that is not controversial in many endemic areas today. There are many, like me, who must be treated for babesiosis before they can recover from what was first diagnosed as Lyme, because the drugs that treat Lyme disease are in general ineffective for babesiosis.

    I spent many years researching my book, Cure Unknown: Inside the Lyme Epidemic, which won the American Medical Association Award for best book, 2009. Judges included not just medical journalists but also physicians, so I think I struck a balance and had credibility in my report. It is my opinion, after the many years of reporting done by me –and the science in my book overwhelmingly comes from mainstream scientists– that the situation warrants different coverage than what the Tribune delivered –including a mention of the work of Dr. Ben Luft of Stony Brook, who is studying the many strains of the Lyme-causing spirochete, Borrelia burgdurferi, which he says may impact presentation and treatment outcome; Dr. Steven Barthold, of the University of California at Davis, who studied the animal model of the disease for decades, and who has found persistence of small numbers of dormant, quiescent spirochetes in collagen (significance to be determined); and the work of Peter Krause of Yale, who has found that babesiosis is almost as widespread as Lyme disease in many endemic areas of the U.S., to name a few.

    All this points to a situation beyond the black-and-white scenario the Tribune reporters portrayed. I myself do not use the term “chronic Lyme” disease –as if to imply that this is an incurable infection that goes on forever. I do contend, however, that the situation on the ground, as experienced by patients, is complicated and very confusing: Because diagnosis is often late, compromising treatment success; because the strains of Lyme disease vary; because treatments are imperfect; because different patient hosts have different immune responses; and because other infections can sometimes be involved.

    For this reason, I feel the Tribune story was overly broad, and in interviewing a criminal as counterpoint to a group of scientists with a particularly circumscribed view, failed to reflect the complexity expressed by scientists like Dr. Luft, or the confusion on the ground experienced by patients –the very elements that lead to so much abuse, and there IS enormous, predatory abuse of these patients, no doubt about it. However, someone who retreats a patient that relapses, as my doctor did for me, is not a predator. Someone who diagnoses and treats real babesiosis, as my doctor did, is not a predator. Because of this careful treatment, I am not sick today. It is important to distinguish between such practitioners –who treat these patients at all, even as the controversy has made them pariahs– and those inventing phony microscopes and pumping patients full of dangerous chemicals.

    I researched this topic for years, not days or weeks as the Tribune reporters did. The Institute of Medicine liked my perspective, and asked me to speak on the patient experience in October 2010 –I believe I was credible to them, or they would not have asked me to present. A book has much more space for explication than a newspaper story, but I still would have handled a story on predatory practices differently by providing more context and explaining more of the complexity and the unknowns.

    By leaving such aspects out, an article like this is prone to make patients sound crazy instead of sick. I think that this kind of story can be more powerful and hold more weight –it would be more balanced, less manipulative and in my opinion, more precise. You continue to say that by requesting more of this sort of balance I am requesting the introduction of pseudoscience –but that simply is not the case. If you have more to critique in this current comment –so be it. I’m done here. Good luck with your blog.

    Pam Weintraub

  6. American Medical WRITERS Association Award for best book, 2009.

  7. John S

     /  December 21, 2010

    Really, Chronic Lyme does not exist?

    Why don’t you read this and tell me if it is possible:

    http://www.northeastern.edu/adc/publications/KL2007Pers.pdf

    and then this:

    http://www.empirestatelymediseaseassociation.org/Persistence/Stephen_W_Barthold_Bb_persistence_in_mice.htm

    I have the disease and it always amazes me how the ignorant can claim that something doesn’t exist by their opinions alone.

    If you persecute the doctors willing to treat a diseae, it is logical that you will end up with a lot of quacks.

    The existence of the disease should not be based on the human element around it.

    Gentlemen, I hope you all live long enough to one day eat crow on this subject.

    Good day

  8. Thanks PalMD, for your beautifully argued defense of our story!

    A correction, for Pamela, who wrote, “I researched this topic for years, not days or weeks as the Tribune reporters did.”

    Neither Trish nor I have spoken to Pamela, so I have no idea where she got the idea that we worked on this story for “days or weeks.”

    The truth is, we spent many months researching it, and spoke to numerous scientists, patients, physicians and advocates. Our story was based on our many, many interviews with these people, and we stand by it.

    Thanks, Trine

  9. John S

     /  December 21, 2010

    Mr. Lipson, why don’t you read the article on persister cells I posted. Tell me that you refute that.

    Your blog is very dismissive of the disease. Have you studied the bacteria yourself? Tell me how you know more than microbiologists.

    Not only Lyme, but maybe many other diseases could be caused by this mechanism.

  10. becca

     /  December 21, 2010

    The key “medical facts” are:
    1) long-term antibiotic treatment does not stand up as worth the risks based on clinical trials
    2) the bacteria cannot be detected in these patients.

    Saying the disease may not even exist is not a medical fact. It’s speculation. In at least one important sense, I would argue there is no such thing as a fake disease. There are merely *misdiagnosed* diseases.

    I know *nothing* about microbiology and immunology which make the following hypotheses a priori absurd:
    A) the organism goes intracellular and partially hides from the immune system and is not detectable
    B) the organism is cleared, but leaves a permanent imprint on some host immune systems, causing long term autoimmunity issues

    NOTHING justifies snake oil treatments. But I have very little patience for discussions of this issue which are not operating off the base assumption that patient suffering matters, and that there are biological mechanisms that can be exploited to alleviate such suffering.

  11. For someone who has spent years doing research for a book on Lyme disease, Pamela Weintraub seems surprisingly uninformed on the subject of “Chronic Lyme Disease”. She seems to be unaware that the majority of people being diagnosed with CLD have never tested positive for Lyme and have never been diagnosed with “regular” Lyme. It is generally NOT a condition of re-occurrence of a previously diagnosed Lyme infection as she says she experienced.

    CLD is being used as the en vogue diagnosis du jour for various idiopathic ailments and symptoms.

    It’s a more desirable diagnosis than chronic fatigue or fibromyalgia because it supposedly has a known cause and treatment, and it’s certainly less wootastic than Morgellon’s. A diagnosis of CLD offers hope, but it is currently an unscientifically supported false hope.

    Really, look at the long list of symptoms commonly ascribed to CLD and you’ll come to the conclusion that everyone on the planet Earth could have CLD because we all suffer from multiple symptoms ascribed to CLD.

    In general, the more vague and unrelated symptoms that are ascribed to a new proposed disease, the more skeptical (not dismissive or cynical, just skeptical) one should be of that disease, just like the more conditions (especially diverse and unrelated conditions) any treatment is supposed to treat or cure, the more skeptical one should be of that treatment.

    The underlying symptoms are usually real and have real causes, but CLD is usually a quack/ unscientific catch all diagnosis for those symptoms.

    CLD is far more geographically widespread than Lyme. Where are all these initial Lyme infections supposed to be coming from when many of the people being diagnosed with CLD (in the absence of a positive test) have never been to a region where the disease is endemic?

    Is it possible that CLD as described by its advocates is a genuine condition? Perhaps, but even then it would probably be safe to say the majority of people diagnosed with it have something other than CLD.

    Just my 2 cents from an interested non MD, non journalist individual and part time, non-classically trained blogger.

  12. Nomad

     /  December 22, 2010

    Oy. Pamela’s posting on Orac’s blog was a litany of logical fallacies. Now she shows up here and employs the mighty personal anecdote.

    The nature of the anecdote is even worse. CLD is supposed to be a condition wherein Lyme disease persists but in some sort of form where it can’t be detected. So she brings her story of having an infection that was apparently detected and treated in the standard manner.

    This is being used to support doctors that treat a disease that cannot be detected using methods that have not been established to be effective.

    Try again.

  13. One thing the CLD crowd seems to not realize is that CLD skeptics are not trying to say people aren’t suffering and don’t have real problems.

    What we are saying is that they (probably) don’t have a condition of Chronic Lyme Disease. That fact that we can’t say what they are suffering from doesn’t negate the likely fact that what they have isn’t CLD.

    • Backwash

       /  December 25, 2010

      “One thing the CLD crowd seems to not realize is that CLD skeptics are not trying to say people aren’t suffering and don’t have real problems.”

      I am fairly certain no person suffering from lyme disease gives a rat’s ass about your facile empathy regarding their suffering.

      “What we are saying is that they (probably) don’t have a condition of Chronic Lyme Disease. That fact that we can’t say what they are suffering from doesn’t negate the likely fact that what they have isn’t CLD.”

      Who is “we” and why do you hedge so much yet imply certainty? There is no such thing as a ‘likely fact’, there are only facts and fictions. You are likely and most probably an illiterate fool.

  14. Funky Fresh

     /  December 24, 2010

    Pamela’s personal story is sooooooo balanced.

  15. John S

     /  December 24, 2010

    “One thing the CLD crowd seems to not realize is that CLD skeptics are not trying to say people aren’t suffering and don’t have real problems.

    What we are saying is that they (probably) don’t have a condition of Chronic Lyme Disease. That fact that we can’t say what they are suffering from doesn’t negate the likely fact that what they have isn’t CLD.”

    Karl,

    Though I thank you for acknowledging that the symptoms can be real, I disagree with you. We are saying CLD possibly exists and might be the cause of our suffering. We hear your arguments trying to dismiss the disease as something else, but we have our own experiences and there is research showing that the disease persists and that this persistence may cause continuing illness.

    http://www.microbemagazine.org/index.php/09-2010-home/2848-persister-cells-and-the-paradox-of-chronic-infections

    http://www.empirestatelymediseaseassociation.org/Persistence/Stephen_W_Barthold_Bb_persistence_in_mice.htm

    So while your opinion is vaild, ours is equally valid. A notion that seems to be missed by so many of the CLD skeptics. Truth isn’t a majority vote my friend.

    Statements that categorically deny the disease are ignorant and just a way to say our opinion is right and yours is wrong.

    I have contacted microbiologists and have been told it is a possibility, so I am not totally misguided.

    I’ll probably be dead and buried when the mess is unraveled, but hopefully it will be.

  16. sciteach

     /  December 24, 2010

    Karl

    can you please provide the scientific proof of your 3 conjectures in this very strong yet unsubstantiated comment:

    “the majority of people being diagnosed with CLD have never tested positive for Lyme and have never been diagnosed with “regular” Lyme. It is generally NOT a condition of re-occurrence of a previously diagnosed Lyme infection ”

    1.Majority of people diagnosed with CLD never tested positive. ( and please do be careful about limiting which tests the author of your proof will accept)

    2.The majority with CLD have never been diagnosed with “regular” Lyme–(and how are you defining “regular” Lyme keeping in mind that even the IDSA cant really pin that down–heck they cant even agree on “stages” any more since an “early” case can immediately present with severe cardiogenic and neurogenic symptoms while lingering untreated cases may simply have swollen knees–even use of “disseminated” has its problems)

    3.Its generally not a condition of re-occurrence ( or perhaps relapse) of previously diagnosed Lyme infection.

    and if you might also comment upon the numbers you will base such a “majority” upon given the very many misdiagnoses and missed diagnoses; as well as the CDC criteria vs other as valid criteria for calling something “Lyme Disease”

    thank you kindly!

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