COMMENT: Drawing the Lines in the Lyme Disease Battle

Drawing the Lines in the Lyme Disease Battle” | by Beth Daley | The Boston Globe | June 3, 2013


This comment refers to the first in a series of journalistic articles by Elizabeth “Beth” Daley, the Globe’s outstanding environment reporter.

Rather than tell readers what to think prior to reading, it may contribute more to share what I hope is covered throughout the rest of Ms Daley’s work on the story and attempt to contextualize the journey she is setting up for us.

This ‘Lyme thing’ is a complex series of interconnected topics, a network of traps within paradoxes ready to confound the most honest attempt at synthesis. So, despite Ms Daley’s evidently diligent crack at journalism, there were a few confusing moments which gave me pause and threaten to sap her credibility.

One minor stumble of a technical nature offers an example.  As Ms Daley states in several instances, the tick is a parasite. So, however, are the infectious organisms coming from the tick. In Ms Daley’s formulations, it is too easy to conflate the offending bacterial spirochete (in this case, Borrelia burgdorferi) with the tick. And this is to say nothing of the organisms responsible for the co-infections, one of which is a protozoa rather than a bacteria (as in the case of Babesia). All of these micro- and macro-organisms are, loosely speaking, parasites. Although this imprecision could belong to editorial, words matter a heck of a lot. I hope the writing ahead gets clearer and reflects the full mastery that the topic deserves.

If the article were self-standing (and not the first in a series), it would be puzzling why Dr Steere is honored with praise in what reads like the beginning of the profile of a hero. Cynics, journalists and weathered folks might think Ms Daley is buttering up the academic doctors, the players in the NIH, the CDC and especially the IDSA, in order to lubricate their free-flowing exchange of information and opinion in interviews. This in the trade is called “Access Journalism” with a wink.

I think, rather, that this humanization of Dr Steere is a part of a parallel strategy, and a smart one, aimed at the general reader. He is, after all, a person.  I think Beth Daley wants to get inside his motivations and explore the mechanics of a medical disaster which is fathered and nourished by careerism, reputation management, medical specialization and perverse incentives.  If we are to comprehend it, then we must begin by thinking of Dr Steere as, essentially, us.  Not one of us, but US.  Ourselves. All the same, this could amount to nothing more than idle speculation on my part, as I harbor hope that there is some reasoning behind this incongruous treatment of Dr Steere that is knowing and logical, if slightly yet out of view.

The question which hangs for me in the air with this piece is ‘why are people so very angry?’ That’s the six-ton elephant in the living room, and it isn’t explained in anything like a satisfying way.  Ms Daley’s summary of how we got here, while true enough, is alarmingly superficial …

The bitter distrust between the medical establishment and some patients reflects a broader trend in health care.  For generations, doctors treated sick patients with no absolute diagnosis by spending time with them and easing symptoms.

[Permit me to insert some questions in the course which are germain to the successful ongoing exposition of Ms Daley’s theme; questions that I hope she will address earnestly and conclusively throughout the remainder of her series.]

Q: In what ways are doctors’ hands tied?

Q: What is the source of information on best-practices for treatment that guides and limits doctors’ actions?  Where and from whom does this information emanate?

Q: Are these guidelines based on fact, or based on something else, something like fact, or something not even close to fact, something masquerading as fact?

Q: What are the professional consequences of exercising (old-fashioned common-sense) clinical judgement?

Q: What are the social consequences for medical practitioners and doctors who treat outside the enforced guidelines?

Q: What are the consequences facing lobbying groups, the Infectious Disease Society of America (“IDSA”) for example, for miseducating doctors? For knowingly miseducating doctors?

Q: What does peer-review mean?

Q: Why in this rare instance of Lyme is the enforcement of adherence to the official guidelines so draconian?

But in today’s cost-cutting health care landscape, physicians are pressed for time and an increasing emphasis is placed on testing to reach a diagnosis.

Q: Which test?

Q: Whose test?

Q: Why do test sensitivity levels of existing testing methods (unacceptably poor) not prompt stronger intervention by doctors to use their clinical judgement?

Without one, there is often little treatment for patients, no reimbursement for doctors.

Q: Why is there no significant funding or effective research for better testing — in both the private- and public-sector?

Q: ‘Reimbursement’ – what an interesting word. Who is to gain from the categorical denial of a disease, or from the far more subtle reduction of a disease-definition?

Frustrated at having no explanation for patients’ suffering, some doctors push them toward psychiatrists, both patients and doctors say.  Shunned, patients hunt answers elsewhere.  In the end, the public and even many doctors on the front line are left with questions.

Q: What does it feel like — physically and emotionally — to be sick, disabled and to be ignored?

Q: What does it feel like to be sick, unproductive and to be dismissed?

Q: What does it feel like to be sick, unavailable to your family and to be blamed for it?

Q: What does it feel like to be innocent and be incarcerated for a crime you didn’t commit?

Q: What does it feel like to have one serious ailment follow another, to go from one specialist to another, to have serial unnecessary surgical procedures, one after another, and to be running out of your savings with no employment?

This Globe article brings the coverage of the issues around Lyme and associated infections to a new level of discourse. The quality of the research is high, the writing mostly fine, and the piece leaves a sense of the beginning of a good yarn with the potential to change hearts and minds on both sides of the debate.

Unfortunately, The Debate appears to be Ms Daley’s main subject and those unnumbered families bankrupted, disabled and disbanded due to the unfairness of “Lyme” would much prefer that Justice be her guiding object.  Ms Daley’s objectivity is the keel of her journalistic ethos. Accordingly, her point of view falls painstakingly in the middle, equidistant from the drama’s boundary extremes: on the one post, the murderous rage of a brain-addled population and, on the other, the rigidity of a poorly incentivized medical elite. She evidently believes both poles have the same distance to travel in order to reconcile their positions.  

On the contrary, the Lyme situation, such as it is, begs for judgement. If Ms Daley’s center were set by Morality instead of her neutral objectivity, then the actions of omission, obfuscation, lies, half-truths, sophistry, bullying and tyrannical persecution on the one bound would glaringly call attention to itself against the quiet background of our helpless despair. The community — our civilization — demands a compass of fairness be applied under the force of truth.

Ms Daley will have been surprised at the acrid response she’s receiving by email and comment from the Lyme advocacy community in Massachusetts upon their reading of her well-hewn first volley. Her surprise will not abate if she continues to place neutrality above right for the duration of the series. But given the quality of this effort, and despite its early signs of a troublesome naivete, we would be well-advised to wait and see what is yet to come before issuing a wholesale condemnation.

Sam Hiser
Lyme Center of Martha’s Vineyard
West Tisbury, Massachusetts

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