Thursday, May 12, 2011

3 Repost: Lyme Disease Rant: The Wall Of Polarization

The following is a repost of an entry on yesterday's Daily Kos.

I realize that in writing about this, I'm not a reflection of the winning chapter in self-help books on how to win friends and influence people. And I know that some of my views may be unpopular with both skeptics and some Lyme disease patients alike because I am not so willing to engage in the polarization I see in how the chronic Lyme disease issue is handled.

My writing here isn't about winning friends or influencing people - it's about dissecting other's goals and motivations, and seeing that people often place their own certainty above the search for answers.

I see polarization as a key component of why the issue of chronic Lyme disease has been treated like the medical hot potato it is, and that in order to make any progress on this issue, d├ętente is required.

And I do look at die-hard skeptics and naysayers as contributing to the problem of chronic Lyme disease being addressed with serious attention. And I also look at die-hard Lyme disease patients on the defensive (rightfully so in many cases, but still...) as contributing to the the problem of chronic Lyme disease being addressed with serious attention.

On the one side, the most die-hard skeptics are nasty. Not only are they ready to state that there is a paucity of evidence to support the existence of chronic Lyme disease, but they are also prepared to characterize patients as suffering from hypochondria, some somatoform condition, or mental illness. At best, they think patients suffer from some unspecified condition for which patients have not been properly diagnosed. On the really far end of this spectrum of skepticism, the die-hards believe all LLMDs are quacks who have set out to take advantage of gullible, ignorant patients and that advocacy groups have wrongfully politicized an issue that has no place in politics.

On the other side, the most die-hard Lyme disease patients are only too ready to be 100% certain that not only do they have chronic Lyme disease and nothing else can be causing their symptoms - but that almost everyone else has Lyme disease, too.  Some subset also believe that there is a conspiracy afoot for certain parties to ensure their continued diagnosis with something other than Lyme disease so that Big Pharma can sell them life-long prescriptions for pain medication and medical bandaids to treat a condition that could have been treated and cured with longer-term courses of antibiotics in the first place.

And I have to call this as I see it:

Both groups suffer from what I view as a form of tunnel vision, where any evidence which lies outside of their preconceived ideas of what is right, true, and correct is discarded.

The issue of whether or not Lyme disease bacteria can persist and cause symptoms is not one that can be reduced to a simple sound bite or be justified by catch phrases such as "the experts say that chronic Lyme disease does not exist," or "so many people have chronic illnesses now with similar symptoms - they must all be caused by Lyme disease."

Both positions are suspect because they are simply positions with no particular relevant data being exchanged to back them up; and, when either side has referred to data online, what I have often seen unfold is a devolving discussion of "he said, she said" which doesn't get to the heart of the issue of chronic Lyme and its potential to persist.

Both sides tend to resort to personal attacks. One side is angry and states that they support evidence-based medicine - yet not sharing the actual evidence and explaining exactly how it supports their position. The other side is angry due to the opposing side's lack of understanding and compassion for patients and validation of their experiences with Lyme disease and its treatment.

Essentially, it is an argument of apples and oranges*.

When the argument becomes one at the extremes, there is no dialog - there are simply two parallel monologues going on where both fruit factions are able to spout whatever supports their most cherished beliefs.

Seek-no-further Apple: "Chronic Lyme disease doesn't exist, and you are crazy to think it does - you're just trying to find some condition that 'fits' the symptoms you're experiencing - whether that condition is real or not."
Blood Orange: "You don't think it exists? You don't think my pain is real? I wish I could infect you with this so you can know what it's like to be in my shoes... even for just one month."
Seek-no-further Apple: "I think you are a hypochondriac and in need of serious professional help. I don't know who has been feeding you these ideas, but it's pseudoscience and they're wrong."
Blood Orange: "If you don't believe in my condition, then you must be working for the bad guys - maybe even Big Pharma - to be responding to me this way. I knew there was a conspiracy against Lyme disease - and now you've just proven it by labeling me and shutting me down."

Stalemate. Complete and utter stalemate. Both parties here are resorting to threats and personal attacks. There is no exchange of information here; there is no room for dialog there - both parties are being unreasonable and lost it long ago.

When civility takes a back seat, you know you're already in trouble.

Reading exchanges like these is depressing and evidence to me that people on both sides of the fence are having a total breakdown in communication.

To both of these parties, I'd like to say this:

Do your homework, and look at all the research. Scientific evidence should eventually bear out the truth in this case, and to "buy" into any position without sufficient evidence to support that position deserves closer examination.

Maintaining an extreme position and fervently espousing one's beliefs is a very different process than beginning from a point of acknowledging that one lacks enough data to make an informed position and to begin stating what you think and why - rather than stating what you believe and why.

What you instinctively believe and what you reason through are two entirely different things.

Those who are less extreme - but still maintain conflicting positions - may engage in discussion this way:

Doctor Hogg Apple: "Chronic Lyme disease doesn't exist because the experts say so. Look at what the experts say:"
Citing Expert: "There is no evidence Chronic Lyme disease exists."
Doctor Hogg Apple: "See?"
Pera Orange: "But antibiotics have helped me! I would have still been bedridden, in severe pain, and not able to think straight if I hadn't had these antibiotics. You don't understand what hell I've been through with this condition. I hope you never get it."
Doctor Hogg Apple: "I understand that you're sick with something, and I do not mean to dismiss your suffering. But that does not mean it is chronic Lyme disease, and you could be experiencing some anti-inflammatory effect or placebo effect from them. That doesn't mean it's a good thing to do."
Pera Orange: "My experience tells me that it is.  I made a lot of progress on them. And besides, there are studies which have shown the presence of spirochetes in the host after they've been treated with antibiotics."
Doctor Hogg Apple: "Experience is anecdote, and while anecdote is a great starting point in science, it isn't evidence. You need evidence before I am willing to consider Lyme disease can be a persistent infection."

And it goes on and on like this, blog after blog, media outlet forum after media outlet forum that I've seen.

Yet I rarely ever see any of these parties seriously sit down and begin a dialog that goes like this:

Discovery Apple: "Chronic Lyme disease doesn't exist because some studies have shown that an overactive cytokine response to dead spirochetes leads to your symptoms of inflammation, and molecular mimicry may be the cause of your condition."
Bergamot Orange: "Even if there is an overactive cytokine response to the low level of remaining spirochetes, how can you be so sure they are dead? Maybe they're metabolically inactive but still infectious. What evidence do you have that it's molecular mimicry that is the cause of my condition? How certain are you?
Discovery Apple: "Because there are experts who have been studying these mechanisms for years, and they are trying to understand what is happening with all aspects of the disease process."
Bergamot Orange: "Which factors make one more of an expert in this field than others, though? If you take two people with equal amounts of experience and professional training in this field, but they come to different conclusions about this disease, how do you determine which has a more valid explanation for what is happening?

THIS is the kind of discussion I'd like to see happen, because it breaks through what I call the Wall Of Polarity.

The Wall of Polarity is present in the two previous exchanges I outlined - it is one in which each apple and orange have already selected their positions in advance and argue them based on a combination of values they choose to support (e.g. scientific evidence from specific authorities is important, on one hand, and personal experience and anecdote is valid in making one's own treatment decisions on the other) rather than actually sitting down and looking at the evidence and research that is out there as a whole from which to support their positions.

The level at which society is going to make any true progress on understanding and addressing Lyme disease - both the Lyme disease which is acute in its presentation and acknowledged and that which presents with persisting symptoms - is if the Wall of Polarity is broken through and everyone begins to work together on solving the problem. Until then, the polarization of the conflict will only do one thing: continue to feed the conflict, and deflect everyone from pulling up their shirtsleeves and investigating the truth.

For those who are so certain that Lyme disease cannot persist, please be more thorough in your explanations as to why you think this is the case, state your position and supporting evidence rather than opinion, and avoid labeling patients one way or another. Unless you are a doctor who has a specific patient under your care, you have no reason to begin diagnosing at a distance - actually, even then you still have no reason to try diagnosing another person online. Stop, please, and just look at the evidence.

For those who are so certain that Lyme disease can persist, I ask of you the same thing:  please be more thorough in your explanations as to why you think this is the case, state your position and supporting evidence rather than opinion and anecdote, and avoid labeling patients one way or another. There might be an underlying etiology to overlapping symptoms in different patients; there may not be.  It's speculation until proven otherwise.

Enough, already. I'd like to see discussions about this topic get raised to a higher level, online and off. Rather than letting everything degenerate to the lowest common denominator, it'd be refreshing to see how we can raise the bar on how much we can learn about what is known and unknown about Borrelia burgdorferi in terms of its pathogenesis and how to best treat it.

Otherwise, STFU.

* The author would like to point out that yes, the named fruits are named varieties that exist. Who knew?

3 comments:

  1. My advice to anyone reading this is that you head over to the Daily Kos and check out over 100 comments on this post there.

    We've been having some intelligent exchanges and so far, no one has ripped me apart. Plus I have learned something from others' comments and criticisms there.

    See comments here: http://www.dailykos.com/story/2011/05/10/974840/-Lyme-Disease-Rant:-The-Wall-of-Polarization

    ReplyDelete
  2. I've read most of the comments on C.O.'s post at KOS. Perhaps I haven't read them all, but I don't see where there's much different there from what has been said over and over in the past 15 years. But the 'political' signatures are cute.

    My favorite sig isn't political but it really hit my funny bone.

    Never meddle in the affairs of cats, for they are subtle and will piss on your computer.--Bruce Graham

    (I'm not saying that the posts lack 'intelligence', just to be clear.)

    Could you direct me to a comment that is particularly 'intelligent'----- like in offering new information (with citations) that will help the science of Lyme get to the next step.

    ReplyDelete
  3. cave76,

    I think it's going to be predictable to see a lot of the same kinds of comments from the past 15 years because we're stuck. The topic of this post wasn't about mobilizing anyone with any particular plan to change things on a sweeping level - it was about how not to and how to engage with skeptics online. Smaller steps on how to discuss tickborne infection with other people so that exchanges are more likely to be, well, an exchange of information rather than arguing at cross-purposes.

    Yes, there are several good sigs there that I've seen so far and the cat one is funny. Thanks for reminding me of it.

    If you're looking for intelligent comments about communicating with skeptics, I can direct you to them and copy them here - but if you're looking specifically for new information with citations about the science of Lyme, this post is not where you're likely to find it. This post is touching on a corner of the science - which is how to discuss it - and not the actual science itself so much ( though I do give an example of a more science-based exchange between people online).

    I'd like to see new information in science as well - and I look for it, and can write about it here or the Daily Kos. To get other researchers to respond to what I write - well, that would be fantastic, and it would benefit patients to know what they are working on.

    I don't know how many researchers are on the Daily Kos, though... I'm sure there are a number of them, on occasion. I guess the question then becomes: How can I write in a way that will encourage their involvement, and also involvement of the Lyme patient community?

    ReplyDelete

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