Monday, June 20, 2011

2 Media Watch: Lyme Disease in Huffington Post & Baltimore Sun

CC Photo Credit: debwire

The past couple of days have seen the publication of two opinion pieces on Lyme disease online: Dan Rodricks' commentary, "MPT airing deeply flawed film about Lyme disease", published June 19 in The Baltimore Sun (121 comments and counting), and Leo Galland, MD's, "Lyme Disease Symptoms:Key Facts About This Mysterious Illness", published June 18 in The Huffington Post (278 comments and counting).

The first article is an op-ed piece about how the film, Under Our Skin, was pulled off the air and not shown by one PBS affiliate station in Boston - but is being shown on Maryland's PBS stations. Mr. Rodrick writes about how Philip Baker, research scientist at the NIH and executive director of the ALDF, views the film as being dangerous to public health and "a one-sided and emotionally charged attack on science". The position maintained by Mr. Rodrick is that after the 2009 IDSA Lyme disease panel guidelines review (part of an investigation conducted by Attorney General Blumenthal) and the 2010 report on that review, the gig is up - science has determined that the standard treatment guidelines are proper for the treatment of Lyme disease.

The second article is one doctor's perspective on which symptoms can be present with Lyme disease and what he states are facts about the disease - while making some jabs at the IDSA. Dr. Galland's position is clear: he believes that Lyme disease can be a persistent infection that survives standard antibiotic treatment and that seronegative Lyme disease happens (how often is not stated here either way).

Figures stated in Dr. Galland's short article conflict with Mr. Rodrick's - Dr. Galland states that over 100,000 people contract Lyme disease each year; Mr. Rodrick says it's 30,000 people and fewer people than contract chicken pox annually - as if that is somehow a valid or even worthwhile comparison to make.

They are both wrong, of course: The total number of confirmed cases of Lyme disease that were reported to the CDC in 2009 is 30,000, plus there were fewer than 10,000 probable cases reported that year - but no one knows exactly how many people have been infected.

Even the CDC has stated:
"Between 2008 and 2009 there was a 3.6% increase in confirmed cases and 35.6% increase in probable cases. Much of the increase can be attributed to variability in surveillance practices, although evidence of true emergence exists in certain areas. Because of the burden on endemic states posed by Lyme disease surveillance, some states have modified surveillance protocols to better manage limited resources. States using modified methods, including case estimation, might report decreased case counts."

So a true, hard number is probably never going to be knowable for a variety of reasons, and whatever estimate you supply depends on who you ask and how the data were collected - ask Wolfram Alpha and others where they got their Lyme disease data, how they weighed it, and where extrapolations were made and how. Ask someone else. I'm sure the answers will be different, and again - is there any way to ensure a more accurate estimate if epidemiological studies are cut short due to lack of funding?

Dr. Galland states the IDSA says 95% of Lyme disease patients are cured and that he finds even just a 5% failure rate unreasonable for a bacterial infection (we are all really concerned about MRSA's failure rate, to be certain) but even within the IDSA's own 2006 Lyme disease treatment guidelines, it is stated that there is an up to 10% treatment failure rate in early infection.

Taken from those guidelines:
"Less than 10% of individuals do not respond to antibiotic therapy, as evidenced by the presence of objective clinical manifestations, and rarely is re-treatment required. In general, patients who are more systemically ill (e.g., febrile with significant constitutional complaints) at the time of diagnosis take longer to have a complete response to therapy."
That's early infection - and not the controversial chronic Lyme disease that has been subject to debate. This alone should be concerning to anyone who is bitten by a tick and is infected.

In terms of the responses to each of these articles, I shouldn't be surprised: once again, the Wall Of Polarization has the opportunity to rear its ugly head in comments. This brings me no small amount of grief to read some of the responses (which I am still weeding through and trying to catch up on, knowing full well by posting this entry that more comments will be added to the fray).

My problem with all of this is that both views tend to be oversimplifications which are viewed as suitable grist for the ratings mill - but neither of these articles truly dig into microbiology (and molecular biology) to show how one could match up the rationale for supporting certain treatments (e.g. longer courses of antibiotics) or denying their effectiveness for what may be happening in the host in vivo.

Nowhere in any of these online articles do I see mention of discussions with content such as this:

Tuberculosis is treated longer term with a combination of antibiotics in part because it is intracellular and it can persist. In several studies, there is evidence that mostly extracellular Borrelia burgdorferi is at least conditionally intracellular - but when, and how often? Do we know - or is this something which requires more research, noting here that intracellular obligate parasites are difficult to study? This is important, because their intracellular nature - or lack thereof - would change the duration and form of antibiotic treatment.

Can Lyme disease bacteria persist in the host after antibiotic treatment? Yes, they can persist. But what are they doing there? Are they infectious and can they replicate? Some researchers say yes; some say no. Given this state of affairs, more research on pathogenesis needs to be done.

Can some genotypes result in more severe symptoms of infection? Yes, they can - and if this is so, is it possible that different genotypes require somewhat different (and possibly extended) treatment?

But these questions are not raised in news articles and op-ed pieces online. Relying on expert opinion often is - without any investigation of the foundation supporting that opinion. And this is where these articles fall short for me, in both cases - here an opportunity to engage the public in science education is squandered.

Presented with two opposing points of view, the casual observer is left with a sense of confusion after reading both sides. One makes their appeal to reason and the IDSA's expertise; the other makes their appeal to reason and their clinical expertise; the patient makes an appeal on behalf of their own human suffering. It is not too uncommon to see others respond to this polarization by throwing their hands up in disgust and walking away, not knowing what the truth of the matter is - but in the end, I hope that somehow the gap can be bridged between the search for scientific fact and tending to the chronically ill with care and respect.

At the end of Mr. Rodrick's commentary, he leaves a quote by Philip Baker:
"I believe in providing equal time to those with evidence to support their claims," says Mr. Baker. "But in this case, there is none. One may have differing opinions on matters related to religion, philosophy and politics. However, when it comes to science, peer-reviewed evidence is the gold standard. The producers and advocates of this slick film have no such proof that merits public viewing."
I both disagree and agree with this quote. I think there already is evidence to support some of the claims of those who think Lyme disease can be a persistent infection, and that more research in this area is necessary. I also think that while Under Our Skin has been a great film for portraying the symptoms and trials which patients must endure, it had very limited discussion of the pathogenesis of Lyme disease Borrelia and discussion of scientific research that supports evidence for persistent infection as well as other causes for persisting symptoms.

2 comments:

  1. You error in giving any credit to the "chronic lyme disease" movement.

    I recommend this paper in the current issue of The Lancet(Sep 2011;11:713-719) :

    "Antiscience and ethical concerns associated with advocacy of Lyme disease"

    "Abstract: Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health."

    And pertinent to this blog, the authors conclude, in part:

    "This situation is not likely to end anytime soon. As with other antiscience groups, many Lyme disease activists are well funded and often connected to influential political and media sources. Treatment of Lyme disease with long-term antibiotics is profitable for LLMDs and can be falsely reassuring to patients, who believe that they have a debilitating chronic infection and thus do not seek diagnosis and treatment for other disorders. There is no deficiency of either new patients or activists. The medical anthropologist Sharon Kaufman wrote that “Information technology has transformed the way trust and knowledge are produced”.67 Most people now find medical information on the internet, and the websites of LLMDs and activists are often viewed as legitimate and reliable sources of information, which they may not be."

    ReplyDelete
  2. Hi Linda and welcome to Camp Other blog.

    I have seen the letter written in the Lancet and already wrote some commentary on it. To be clear on it: The commentary was about the social and patient-perspective on the content and not a scientific rebuttal, though I am working on an outline which addresses the scientific bullet points within the full text of the letter - the full text of which the vast majority of Lyme disease patients may not have seen because it's behind a pay wall.

    I can say that there definitely seem to be some odd myths out there about Borrelia - but there are also cases where the authors of the letter state something is not true when research has shown that either the evidence is inconclusive or the evidence is strong but further confirmation is needed. Perhaps at some point later down the line when I bring these topics up for discussion, you can chime in and say what you think.

    I understand the points made within the letter and can see what is going on from both sides of this controversy. And there are issues on both sides of this controversy which have an unfortunate way of having a negative effect on patients: On the one side, while there are skilled and experienced doctors who treat Lyme disease patients well and with respect, we can't deny that there are charlatans and alternative medicine proponents who use very unusual treatments which are at times harmful and even lethal. (I do not advocate the use of MMS or bismacine injections among a number of other non evidence-based treatments.) On the other side, we have a guidelines panel of ID specialists who have not come up with an answer for why patients have post treatment Lyme disease persisting symptoms - they hypothesize it is autoimmune in nature, yet there are no biomarkers for this as yet nor is there any treatment.

    Both the charlatans and the lack of a clear clinical definition for the state of chronic Lyme disease - as well as more effective treatment - work against patients.

    The more I've read about this controversy, the more I can see where frustration lies on both sides.

    Linda, I'd like to know why you think the second quote you made is pertinent to this blog? From where I sit, I'm just trying to figure out what the truth is and I question all of it.

    Regarding the rest of that second quote: I have sought diagnosis and treatment for other disorders to be sure I rule them out or in. I think that's the only intelligent course of action for me to take.

    If I am linking directly to scientific studies and am looking to discuss them, and you perceive that I am missing something - some important fact or a different study which refutes or challenges it - then please point it out to me. I would appreciate having more feedback from more people, including a nurse such as yourself.

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