Monday, December 27, 2010

3 Chicago Tribune “Chronic Lyme: a dubious diagnosis” Post-Mortem

It took a couple weeks of writing, re-writing, and re-reading to bang out the five part response to the Chicago Tribune’s “Chronic Lyme: a dubious diagnosis” article.

I said a lot about the article in terms of how a reader might want to ask questions at each step of the way, and offered some feedback on the content directly by posting some commentary on each section. The general idea was to encourage anyone reading the article to question the veracity and purpose of each bit of information in the article and consider doing their own investigation on the issue of Chronic Lyme.

One of the things which bothered me to begin with was the title. “A dubious diagnosis” doesn’t really seem to fit the authors’ position communicated in the article. What would have been a better title would have been, “Chronic Lyme: disciplined doctors and alternative medicine fraud” or something like that - because the article doesn’t even explain why Chronic Lyme is a dubious diagnosis. It just quotes a so-called expert about it and spends most of the article exposing the disciplinary records of two doctors and one case of fraud.

But this one thing is more of a nitpick. It was only one of several issues with the article, and I don’t even know if I have the stomach to continue discussing all of my issues with it... Dealing with writing five entries’ worth of commentary and questions on the article burned me out somewhat.

My general take on the article is that the writers were writing a negative position piece on Chronic Lyme Disease to include it on their series of articles on dubious medicine without really investigating it. It looked at the worst possible side of it without considering the alternatives or the full picture because the writers’ goal was to call it dubious in the first place and present “evidence” showing why it was dubious.

As a piece of investigative reporting, it failed abysmally. As a position piece explaining the science behind Chronic Lyme Disease or even the bacteria, Borrelia, that causes it, it failed. Even in supporting its claim that Chronic Lyme is a dubious diagnosis, it failed, because nowhere in the article is scientific evidence given that proves Borrelia bacteria cannot persist - the closest the authors get to touching on that issue is mentioning clinical trials where extended courses of antibiotics are shown not to have a lasting effect in three trials and a positive effect in one.

The article fails to pass the scrutiny of Carl Sagan’s Baloney Detection Kit (what I myself think of as Carl’s BS Detection Kit, but Carl was always more reserved and less crude compared to me) on multiple counts, too, which I’ll outline below:

Ad hominem - attacking the arguer and not the argument.

The authors decided to focus on two doctors who treat Lyme Disease who have disciplinary actions on their record and one charlatan who admitted guilt in a court of law. None of these prove or disprove the existence of Chronic Lyme Disease.

The authors had one doctor insult the IDSA and a infectious disease specialist insult high-earning doctors who take advantage of patients. Neither of these acts prove or disprove the existence of Chronic Lyme. They only prove that two doctors can insult each other.

Argument from “authority”.

The authors take the position that they are an authority on writing this article about Chronic Lyme Disease, since they are reporting it. But what claims do they have to being an authority? Do either of them have experience in science journalism? Have either of them studied microbiology or done extensive research on the nature of a Chronic Lyme Disease or Post-Lyme Syndrome diagnosis and its causes?

The authors refer to the IDSA 2006 Lyme Disease guidelines panel as the experts - as if there were no other experts to which to refer to - when Carl Sagan states that “Arguments from authority carry little weight (in science there are no authorities).” There are many academic researchers, microbiologists, doctors, veterinarians, and others who are knowledgeable about Borrelia bacteria and studies done on the issue of persistence that the authors could have used as reference sources.

Carl Sagan said, “Whenever possible, there must be independent confirmation of the facts” and “Encourage substantive debate on the evidence by knowledgeable proponents from all points of view.” This did not happen in this article.

Argument from adverse consequences (putting pressure on the decision maker by pointing out dire consequences of an “unfavorable decision”)

The authors engage in culture of fear tactics designed to encourage the public to get upset about the use of long-term antibiotics by focusing on the negative outcomes of their use for Lyme Disease without focusing on the positive outcomes of treatment and the fact that antibiotic use for other conditions has the same risks.

The authors also point out that two specific doctors who have treated Chronic Lyme Disease have ended up getting disciplinary actions on their records without pointing out that a number of these actions were relatively minor, and authors focused on one doctor who was accused of harming a patient and who has also charged very high fees for services. These doctors who treat Chronic Lyme Disease are a fraction of the total - a total which was deliberately ignored. Not all doctors have had charges leveled against them and those that have have not all been guilty of them.

Not all doctors charge very high fees for services, and when compared against other professionals in their field, actually charge a lot less when comparing a full hour appointment to a ten minute fly-by managed care appointment.

Appeal to ignorance (absence of evidence is not evidence of absence).

There is not one statement in the entire article which proves that Chronic Lyme Disease does not exist. There is not one statement that proves that Borrelia bacteria cannot persist.

The authors avoid these issues entirely and just state that the condition may or may not exist and at some point said it never existed in the first place - a sign of an inability to maintain a consistent position.

The authors failed to investigate and produce evidence that showed what happens to Chronic Lyme Disease patients who are not treated with antibiotics, so that the reader could not weigh the negatives of going without treatment. Instead, authors played to the public's fears about antibiotic resistance - which can occur for numerous reasons and at much higher rates than CLD patients will produce.

Observational selection (counting the hits and forgetting the misses).

The authors did not look at all the data and share the data where persistent Borrelia has been shown to exist. The authors did choose to focus on four trials which were about antibiotic treatment and not about persistence. The authors already had their position picked out before they began writing, rather than to leave doubt that reflects the state of the science.

Statistics of small numbers (such as drawing conclusions from inadequate sample sizes).

Choosing two doctors from the entire medical profession which treats Chronic Lyme Disease (CLD) definitely suffers from the statistics of small numbers. How can these two doctors possibly be representational of all the doctors who treat CLD? And even with just two, each chosen had very different accusations made against each of them. One could even say that the fact each of them had disciplinary action against them was one thing they had in common, but after that, they diverged.

The four clinical trials that were conducted suffered from this. More trials need to be conducted with varying designs, goals, and larger sample sizes. Proving persistence is not about proving whether or not a specific set of antibiotics works to treat certain symptoms by a given timeframe - that’s a different motivation.

Carl Sagan said it is important to conduct control experiments - especially "double blind" experiments where the person taking measurements is not aware of the test and control subjects, and to also check for confounding factors - separate the variables. An attempt to do the first was made by having these clinical trials, but it seriously fell down on the second. Once the small numbers issue is added, the trials have less weight on that count alone.

Inconsistency

The authors said at different times that Chronic Lyme Disease might not exist and never existed. These are two statements, one that has doubt and one that has no doubt.

Non sequitur - “it does not follow” - the logic falls down.

Just because there are doctors who have disciplinary actions against them and just because there are charlatans looking to make a quick buck off sick people does not mean that Chronic Lyme Disease is dubious diagnosis. It just means that there are doctors out there who treat Chronic Lyme Disease who happen to have disciplinary actions against them, and like many other diseases, CLD is targeted by internet marketers.

Just because there are four clinical trials of which three of those four showed that long-term IV antibiotic use may not confer long-term benefit on a small group of people with CLD symptoms does not mean CLD is a dubious diagnosis. It means that by the parameters of the trial design, that group of patients did not show lasting improvement.

Just because doctors make a lot of money from their services doesn’t mean all doctors who earn a lot of money are out to take advantage of patients. That argument falls down almost immediately when you realize how much the average doctor and average specialist earns, and then learn just how much their overhead really is even for the typical doctor.

Just because one doctor (or even ten or more) is accused of misdiagnosing a patient with Lyme Disease and has disciplinary action against him or her does not remove the fact that:
1) people do have Lyme Disease,
2) people might have a chronic form of this disease,
3) other doctors misdiagnose patients with other conditions all the time, and
4) other doctors properly diagnose patients with Lyme Disease all the time, including more stubborn cases to beat as in neuroborreliosis.

Excluded middle - considering only the two extremes in a range of possibilities (making the "other side" look worse than it really is).

On one hand, we have people who believe Chronic Lyme Disease is real, caused by a persisting infection, and they are suffering from it. On the other hand, we have people who believe it does not exist at all, and therefore, long-term antibiotic treatment for it is dangerous and unnecessary. The truth is far more complicated than either position. It may be that a combination of conditions give rise to Chronic Lyme Disease, and it may be both based on persistent infection and immune dysregulation. It may be only a subset of the population gets more severe symptoms after infection. It is already known that different genotypes of Borrelia produce different symptoms, and this does affect outcome, too - some forms of Borrelia produce a rash but no other symptoms; some produce no rash but severe symptoms; some produce both rash and severe symptoms. Borrelia miyamotoi produces relapsing fever. It goes on from there. Also, many people who get bit by a tick often get infected not only with Lyme Disease but with other infections - some of which can relapse (e.g. Babesia) and are hard to eradicate.

The black and white-ism of “chronic infection is real” versus “chronic infection is not” is an undercurrent of the article in portraying the experts’ view and that of a few doctors. What is avoided entirely is the excluded middle - scientists, researchers, doctors, and many others who are full of doubt of the single cause hypothesis and want to lay all the facts on the table. It is this excluded middle I would like to see more about.

*sigh*

Okay, I could throw something in here about "Occam's Razor" and how if someone still has the same symptoms they had 4 weeks after a tick bite that they had 3 weeks after a tick bite, that the most logical conclusion to draw is that the patient is still infected with a tick-borne illness, but frankly, I'm tired. I'm going to save energy for a more positive review for the Roanoke Lyme Blog series, Lost in the Woods.

3 comments:

  1. A great dissection of the article. Sorry that it was so exhausting, but it is so helpful to those who don't yet understand the struggle that lyme patients endure when they are made to look like malingerers by the undereducated press. (That is to assume they (journalists) don't know any better. I believe sometimes they do.)

    Another important point to be made is that the author did not disclose the fact that Dr. Jeffrey Parsonnet did not just testify against the NH bill to protect lyme treating physicians, he was also a member of the so-called unbiased panel that was chosen to review the 2006 Guidelines and then determined that there was no need to make changes. I believe that is an important disclosure.

    ReplyDelete
  2. Thanks, Elizabeth.

    Yes, it is tiring, and dealing with the Lyme itself is tiring, too. I think it depends on which journalists you are talking about - I certainly think the Roanoke Times recently did more balanced reporting on the controversy and support for Chronic Lyme Disease.

    Good point, to point out that Dr. Parsonnet testified against the NH protection bill and was also on the guidelines review panel. Thanks for adding that fact, it's important to know!

    I wish I knew which doctors and researchers out there outside of ILADS watched and supported the rebuttal to the 2006 guidelines... it would be fascinating to talk to them and find out what they would do if they were in the patients' shoes.

    ReplyDelete
  3. Thanks for a moment of clarity. Life with Lyme's is a life of obstacles, and the Chicago Tribune article just create more obstacles for us. I also posted a response to the article you can view at isitlyme.blogspot.com which was a more personal opinion and not a formal analysis. Like you, I am trying to do my share to raise awareness of the state of Lyme's and other tick born illnesses by encouraging discussion. It is very difficult to get people involved in an issue until they have been personally directly or indirectly affected. The bright (however sad) news is that at the rate tick born illnesses are spreading indicate it will not be long before everybody will be directly or indirectly affected. Thanks again for doing your share to educate and inform about this just cause.

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