What I’ve learned reporting about Lyme disease, a contested illness - David Scales

Sly Saint

Sly Saint

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As Jeff Wheelwright began researching his book about Gulf War Syndrome, he planned to speak to suffering veterans and medical experts who were skeptical those ailments were real. But the first veteran Wheelwright interviewed flipped the script. “What is the goal of your book?” the man asked. “Does it lean more toward the veterans’ side of the house, or the other side?”

Wheelwright’s experience resonated with me. When I began reporting on Lyme disease in 2017 for a series for a Boston National Public Radio station, I quickly learned my attempt at impartiality was naive. I’m a physician, and in medical school I learned a strong majority of physicians and scientists view this common tick-borne illness as relatively straightforward and treatable by antibiotics. Many people and some doctors, however, hold that a chronic, treatment-resistant form of the disease is also widespread—a claim dismissed by the large majority of infectious disease experts.
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Journalists without time for background research can stumble onto one of those landmines. In 2011, reporter David Tuller wrote about a trial exploring the benefit of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). “Not knowing any of the background, I took the study at face value,” he later wrote.

The backlash was immediate. Numerous ME/CFS sufferers wrote in, concerned about the trial’s numerous methodological problems. Compelled to dig deeper, Tuller eventually penned a 15,000-word critique of the trial’s methodology. (The controversy continues today.)
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full article here:
https://www.cjr.org/analysis/lyme-disease-contested-illness-empathy.php
 
Aside from the feel-good references to ME/CFS and David Tuller, does this seem like an unbiased perspective?
 
duncan said:
Aside from the feel-good references to ME/CFS and David Tuller, does this seem like an unbiased perspective?
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I scanned it as I my cognition is foggy today but, I didn't see it as a problem article. It just seems to be an article on learning how to understand the patient's experience as a journalist, not for or against the Lyme Disease diagnosis.
 
Patient4Life said:
I didn't see it as a problem article. It just seems to be an article on learning how to understand the patient's experience as a journalist, not for or against the Lyme Disease diagnosis.
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Fair enough. A couple points:

1) If I am reading his credentials correctly, the author is not just a physician. He is a sociologist as well. Which hat did he don for this piece?
2) His wording seems odd to me for a claim of impartiality. For instance, "...a strong majority of physicians and scientists view this common tick-born illness as relatively straightforward and treatable with antibiotics..." vs "...Many people and some doctors..." - and in that very same sentence, he slants the reader even more against it by adding "... - a claim dismissed by a large majority of infectious disease experts."

Does that strike you as balanced?

Referencing a study that apparently characterizes cfs and Lyme etc as "...illnesses you have to fight to get... because whether those illnesses even exist is hotly debated...", isn't this kind of setting a bias in the reader? There is no doubt Lyme exists, for instance. The very next paragraph, he once again appears introduce a soft bias by pitting "patient-activists" against "..the scientific process."

"...by helping patients and scientists alike..." - doesn't that seem to suggest two opposing sides? The reality is, physicians and research scientists and patients can be found on both sides of this controversy. But I don't get that feeling from what he has crafted. In the paragraphs that follow these examples he seems to repeatedly draw parallels that to me suggest patients/ordinary people are on one side of the controversy while physicians and scientists and science are on another.

That simply isn't true. Over the last two or three years, the major Lyme research initiatives that pop into my head come from Johns Hopkins and NorthEastern and Tulane, and they each - repeatedly - suggest that Lyme persister cells exist AFTER IDSA-recommended abx therapy.

And there are what for me resonate as suggestive seeds in this copy, like "...I'd ask probing questions if my interviewee veered toward the conspiratorial..." Er, what? Conspiracy? Does he suggest conspiracy with the IDSA Lyme authors who are in court right now down in Houston?

Even his final 2 paragraphs, where first he appears to laud himself, and then he opines about the rational preference of RCTs over anecdote, fail to capture the controversy fairly, eg, the three infamous Lyme RCTs where the variables are very much disputed to this very day, and now more so than ever. Where does he address that?

Where is the balance?
 
It is rational to prefer RCT results over anecdote. There are still plenty of potential problems with RCTs, but anecdote-based-medine has an even worse history of promoting quackery.

Also, while there are problems with doctors being dismissive of some symptoms of Lyme and long term-problems that it can cause, there are also problems with patients getting sucked into Lyme quackery, unvalidated testing, expensive treatments with no evidence of efficacy, etc. I think it's right to be trying to critically assess everyone's claims.

For a piece that tried to touch upon a wider range of controversial issues, it was never going to have room to go into the details in the way that is needed for a really interesting discussion. That meant that I wouldn't really recommend it to others, but it was still of some value to get an impression of the perspective of a journalist writing on this topics.
 
Esther12 said:
It is rational to prefer RCT results over anecdote. There are still plenty of potential problems with RCTs, but anecdote-based-medine has an even worse history of promoting quackery.
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Agreed, but if you are going to deliberately bring up RCTs in the Lyme world, and you are positioning yourself as an impartial writer, hadn't you better qualify the exception that Lyme presents to the RCT rule of thumb?

Esther12 said:
Also, while there are problems with doctors being dismissive of some symptoms of Lyme and long term-problems that it can cause, there are also problems with patients getting sucked into Lyme quackery, unvalidated testing, expensive treatments with no evidence of efficacy, etc. I think it's right to be trying to critically assess everyone's claims.
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Agreed. That does not help as to whether this piece was written with an impartial effect.

Esther12 said:
For a piece that tried to touch upon a wider range of controversial issues, it was never going to have room to go into the details in the way that is needed for a really interesting discussion. That meant that I wouldn't really recommend it to others, but it was still of some value to get an impression of the perspective of a journalist writing on this topics.
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I walked away feeling manipulated.
 
Mary Beth Pfeiffer, if I recall correctly, was nominated for a Pulitzer for her reporting on Lyme disease.

Edited to add: @Snowdrop 's link is to what appears to be a book review by Scales of a book about Lyme written by Mary Beth Pfeiffer. The review does not seem all that impartial to me either. I do not see any reference in that review to her Pulitzer nomination specific to Lyme reporting - a little disconcerting when he characterizes her "assessment of the scientific evidence" as "often unbalanced."
 
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I am transparent about my leanings when I write about Lyme. I make no bones about being biased based on my readings and experience. I also have reviewed (and, from time to time, critiqued) articles and opinions and studies of people who disagree with me. We may not see eye-to-eye, but I appreciate when they are up front with their opinions and don't make noise that vaguely or directly suggests disinterest and impartiality.

I do not care for implied or declared disinterest when the narrative, whether inadvertently or not, evokes in me something quite different. In the past, when I have encountered it in overt examples, it often felt like posturing with an agenda, and almost invariably I walked away dissatisfied. Of course, I could have just been misreading; that could also be the case with this article.

But in theory, @chrisb , I agree with you. :)
 
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