Chronic Lyme and the dangers of writing about medical manufactroversies

Last week Patricia Callahan and Trine Tsouderos, two science reporters at the Chicago Tribune, published an excellent article debunking the notion that Lyme disease is a chronic condition that causes physical ailments ranging from backaches to an inability to concentrate. The Trib‘s headline does a pretty good job at summing up the story:*

Chronic Lyme disease: A dubious diagnosis. There’s little good evidence that chronic Lyme disease exists. Yet doctors are treating it with drugs that put patients and the public at risk.

Chronic Lyme has become, like Morgellons disease, a diagnosis that’s become a rallying cry for self-identified sufferers who, as Callahan and Tsouderos describe, have been goaded on by “alternative” medical practitioners who claim the reason the medical “establishment” doesn’t recognize their treatments are because the power-hungry ogres at the AMA and CDC feel threatened, or are being paid off by the pharmaceutical industry, or all of the above. (There’s a certain elegance to the ways in which reactions to these types of articles reinforce the articles’ central points. To wit: In a post titled, “Trine Tsouderos: A Case of Modern Dubious Reporting,” a blog called The Lyme Spot tries to build outrage at the Trib by claiming that Tsouderos and Callahan had written, “There is little good evidence that Lyme disease exists.” Now, compare that line with the story’s actual headline — “There is little good evidence that chronic Lyme disease exists” –  which is the only place anything even resembling that wording appears. Deliberately and obviously misquoting someone to make a point isn’t the best tactic when trying to prove that your beliefs are backed up by rational analysis and careful consideration.)

There are several reasons “A dubious diagnosis” is so notable. It goes against the widespread journalistic phenomena of presenting medical manufactroversies as if they were legitimate debates.** This is a subject I write about at some length in The Panic Virus (out on January 11 and available for pre-order now).

It’s also the latest example of reporters or bloggers being threatened after accurately reporting about various forms of quackery. (Tsouderos and Callahan have already been subjected to this repeatedly after they reported on bizarre and unproven treatments for autism such as injecting children with drugs used to chemically castrate sex offenders.) Several weeks ago, Elyse Anders, one of the Skepchicks, organized an ultimately successful campaign to stop movie theaters in California from running a SafeMinds PSA urging people against getting flu shots because of an urban legend about a mercury-based preservative causing autism and other neurological disorders. As Orac wrote, a counterattack was launched on a vaccine-obsessed website called Age of Autism. This included posting a photo of Elyse:

This is the woman who fought to pull the SafeMinds PSA’s from the theatres. It’s her FB profile page photo. She is anti-choice and wants to tell you that mercury is safe and that Thimeosal is good – according to her blog. She trolls AofA regularly. As do all the pro-vaccine-injury bloggers.

“A dubious diagnosis” has resulted in even more shameful and frightful attacks. On one Lyme site — I’m not identifying it for reasons that will become obvious in a moment — a commenter writes, “Here’s the info on one of the co-authors of the piece. Feel free to give her a call or drop by and let her know what you think!” He then proceeds to post Tsouderos’s actual home address. Three minutes later, one of the site’s “frequent contributors” wrote, “Whether or not is will be won is up to us. They’ve given us evidence, jury and gavel–but we do need to bring down the hammer.”

Regardless of your views on chronic Lyme disease, or autism, or the media, or the Tribune Company, or people whose last names begin with two consonants, this is shocking stuff. Tsouderos has said in the past that she doesn’t believe this type of odious behavior influences the debate at all. I’m not so sure: How many reporters out there have considered writing about one or another of the medical “debates” going on only to decide that it was safer and less stressful to stick with a topic that doesn’t result in death threats and harassment?

* It’s important to note that the two reporters go out of their way to make clear that Lyme disease is a legitimate diagnosis; the fourth paragraph of their story reads, “Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics.” They’re just talking about a purported chronic variant of the disease.

** For examples of this vis-à-vis chronic Lyme, see: Chicago Sun-Times, 5/5/10, “Shedding light on lyme; Patient suffered from painful symptoms of ‘the great masquerader’ until specialist got a handle on disease;” The Washington Post, 4/20/10, “Ticked off, ‘Lymies’ challenge experts;” San Francisco Chronicle, 9/14/09, “Lyme, an ailment that’s been largely misunderstood – or flat out denied – by the medical establishment;” The Boston Globe, 9/13/09, “Ticked Off at the medical community; Lyme-disease awareness group tries to put spotlight on chronic cases.” You get the idea.

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4 Responses to Chronic Lyme and the dangers of writing about medical manufactroversies

  1. Pingback: Quick Links | A Blog Around The Clock

  2. Sullivan says:

    There is a small segment of the autism parent community which considers autism to be a form of chronic lyme disease.

    The threats against Trine Tsuderous are, unfortunately, not surprising to people who have watched the alt-med world react over the past few years. The leadership of some of these groups could go a long way towards stemming the threats, but they don’t. In fact, they often are part of the source of the problem.

  3. Elaine Showalter was threatened to the point of needing to hire a bodyguard when her book “Hystories” was published, by the chronic fatigue and fibromyalgia people who didn’t like what she had to say about their illnesses (another chapter in “Hystories” was on alien abduction). Imagine how much strength a chronic fatigue sufferer would have to rally in order to physically confront someone. It would be a miracle cure.

    After first and especially second-wave feminism ruined much of our cerebral activity, there has been such a backlash on attempting to explore the possible emotional and relational environment of the infant’s home in cases of autism that there was nowhere to go except to the doctor and his or her evil vaccinations, anywhere away from disturbances in parent/baby neuro-linguistic bonding or psychoanalytic theories. These theories still stand up, but we would need a bodyguard if we wrote a book about the possibility that disturbances in mother/baby bonding had anything to do with anything.

  4. Tina says:

    Dear Mr. Mnookin:

    It is troubling to me that you spend valuable time commenting on articles written about issues surrounding the treatment (and lack thereof) of the second and third (chronic) stages of infection from Borrelia burgdorferi. Your opinion is troubling to me due to the fact that I have spent the past 12 years of my life battling this chronic infection and nearly 6 years serving as a patient advocate for other chronic Lyme disease sufferers.

    Although each of us is entitled to expressing our opinions, I emphasize that your blog entry regarding Borreliosis infection is just that – merely an opinion. However, investigative journalism requires investigation of the facts surrounding an issue that one writes about on their blog or in an article or a book to be read by the public. In this case, the disservice you are providing to the readers of your blog may, to their detriment, negatively impact them someday, should they ever contract Borrelia burgdorferi infection and the myriad of co-infectious pathogens transmitted by ticks, mosquitoes, mites, horseflies and fleas.

    I expect you, presenting yourself as a credible investigative journalist, to conduct research prior to commenting on important public health issues (pandemic) that affect the lives and livelihoods of hundreds of thousands of families worldwide. An adequate and responsible investigation would include researching published medical journal articles (as I have done for the past 6 years) in an effort to relay accurate information that would benefit your readers and not possibly harm them.

    Since your blog entry fails to address any of the important medical issues surrounding Borreliosis, I am providing you and your blog readers with a link to the response I wrote to Chicago Tribune Editor Gerould Kern and Tribune writers Tsouderos and Callahan. My response contains ample supporting documentation of the very simple medical fact that an untreated Borrelia burgdorferi infection leads to a chronic, embedded infection within the body that becomes an immense challenge for patients and physicians to eradicate, especially when treatment regimens are deliberately confined to certain antibiotic protocols and time limits are placed upon length of therapy.

    http://www.leaparizona.com/chicagotribunedec2010.htm

    From Taber’s Cyclopedic Medical Dictionary:

    chronic [Gr. chronos, time]. 1. Of long duration. 2. Designating a disease showing little change or of slow progression. Opposite of acute.

    Educationally yours,

    Tina J. Garcia
    Founder
    Lyme Education Awareness Program
    http://www.leaparizona.com

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