Friday, December 17, 2010

0 Part 1: Critique of Chicago Tribune's "Chronic Lyme Disease: a dubious diagnosis"

Well, where do I even begin with this piece of poorly investigated, tabloid-style, sensationalistic, unfounded "journalism"?

There is so much. I think I'm going to have to dissect it over several entries, starting with today's entry.

Let's start at the very beginning and begin shredding the subtext, one section at a time, shall we?
"With a lime-green Lyme disease advocacy ribbon pinned to his dapper black suit, Raxlen joined partygoers sipping martinis below a stained-glass skylight bigger than most New York City apartments. Money was in the air. The "Unmask A Cure" gala invitation listed Goldman Sachs, New York Private Bank & Trust and Marquis Jet as sponsors. The event raised money for the Turn the Corner Foundation, a Lyme nonprofit on whose medical advisory board Raxlen sat."
Those with money are donating money at a gala for Lyme Disease. In particular, Chronic Lyme Disease. Obviously the authors thought it was a brilliant idea to show how well-heeled the backers were and somehow this was important to share and...why? Many charities have their own races for the cure and galas for the cure and telethons for the cure and they have their own sponsors and private backers. Breast cancer, anyone? This is no different, really.

And folks, you do know that Goldman Sachs has been encouraged to give up its executive bonuses during the past year and give more to charity, don't you? It was in the news earlier this year. I bet this is one of many charities Goldman Sachs gave to, rather than up their salaries again. Good for them, I say!

I would have to say that when it comes to the issue of funding for Lyme Disease research,  it would be more important to the reader to know if Turn the Corner was somehow misusing the money donated to them and not disclosing their budget to donors. Or to somehow find out that only a small percentage of their budget went towards actually, well, unmasking a cure.

But the Tribune authors weren't after that. No, they were looking for far, far lower hanging fruit. So low, in fact, that they were digging up root vegetables.

"The scene was light-years from the institutional brick building where the Connecticut Medical Examining Board was considering disciplinary action against Raxlen for the fourth time in 10 years. Raxlen had been accused of telling a woman dying of Lou Gehrig's disease that she had chronic Lyme disease, an illness that might not even exist."
So here we have a doctor who is on the board of a charitable organization to help find a cure for Lyme Disease (Neuroborreliosis or the chronic form) who has also had disciplinary actions against him four times in 10 years.

Does it make a difference to know what those actions are and what the outcome was? Were they minor disciplinary actions? Were they justified? Were they from insurance companies or were they from patients? Does he still have a license to practice or has it been suspended?

Of course, having any disciplinary actions at all on his record does not look good. But readers are lacking the full story here, which would have been good to investigate.

As it stands, the authors leave readers with the impression - intentional or not - that since Dr. Raxlen was accused of misdiagnosing one patient that all these other cases of disciplinary action on his record may also be about the same charge.  

Not so.

With a few minutes on Google, this information on Dr. Raxlen showed up on casewatch's site.  While I am not a huge fan of casewatch, the actual charges here can be verified elsewhere:

"The Connecticut Department of Health has disciplined him twice. In 1999, Raxlen was charged with (a) refusing to send a patient's record when the Health Department requested it, (b) inappropriately prescribing several drugs to a patient, and (c) failing to maintain malpractice insurance as required by state law. [...] He was reprimanded and ordered to pay a $20,000 civil penalty. In 2004, Raxlen was charged with failing to provide the records of 15 patients requested by an insurance company even though each patient had signed a written release. When the Health Department repeated the request, he submitted 13 records and stated that he had lost one patient's records. Under a consent agreement, he was reprimanded, ordered to pay a $15,000 civil penalty, and ordered to present new patients with a notice stating that he may be required by law to supply records to insurers and the Health Department. The New York State licensing authorities subsequently fined him $2,500 each for these cases."
Most of these are insurance and malpractice insurance related charges. And if the authors did a bit more research on the nature of such charges, there is a possibility that they may be related to arguments with insurers over coverage for intravenous antibiotics - which is just one example of many cases where insurers deny coverage, even when treatment is necessary.

Either way, having these actions on one's record is not great for the reader to see, and the one that sticks out in most people's minds is going to be that (b) part, about inappropriately prescribing several drugs to a patient.

What happened? More information there would probably be beneficial, as some tick-borne illnesses are treated with more than one drug simultaneously by all doctors, such as Babesia's gold standard treatment is taking both Mepron and Zithromax together. If a patient has not only Babesia but some other condition or conditions, they may be on many drugs simultaneously. Further investigation is warranted.

Was the accused doctor necessarily wrong about the misdiagnosed patient? Is it possible that a patient could have both Lou Gehrig's disease and Lyme Disease? Even if there are limited records of such comorbidity, isn't it still possible? Certainly a number of other medical conditions are known to have a high comorbidity, like people with diabetes often have heart and circulation problems, and people with HIV often have a number of other infections like pneumonia because their immune systems are weakened.

On a very basic level of reporting, even if I disregard all of the above, I have to wonder why the authors of this article didn't interview the Turn the Corner Foundation itself, and ask the rest of its members why Dr. Raxlen was on the medical advisory board with his record and why he was given an award for his services. It seems like major oversight to not have asked such simple questions.

And if after these interviews, the Tribune authors wrote that the Turn the Corner Foundation's entire advisory board was corrupt (highly unlikely), this still does not change the question of whether or not Chronic Lyme Disease is real and how one should treat it. These would be two distinctly different issues.

One has to ask why the authors of this article decided to highlight one doctor who has helped people with Lyme Disease who has also had disciplinary action against him without also highlighting one doctor who has helped people with Lyme Disease who has had no disciplinary action against him.

The simple answer is this: The authors have an agenda.

This agenda becomes clearer when you read the entire article and see that it is a position piece where the authors are discrediting the existence of Chronic Lyme and criticizing doctors (some of which do engage in questionable practices) and alternative treatments used to cure patients.

Carl Sagan's Baloney Detection Kit would say the authors are using this doctor as a "straw man" or caricaturing or stereotyping a position to make it easier to attack. The authors want this one doctor to be representational of all doctors who treat Chronic Lyme, and will use those doctors who have negative marks on their records to support their position against Chronic Lyme.

But just because this one doctor is being accused of misdiagnosing a patient with Lyme Disease and has disciplinary action against him 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.

Mentioning there is one doctor - heck, even several doctors - with a disciplinary record who have treated patients with Chronic Lyme Disease (whether you believe in its existence or not) neither proves nor disproves that the disease itself is real.

The authors continue:
"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."
Well finally. Someone actually says something about Lyme Disease itself and the first statement is fact, and the first half of the second statement is fact, but the second half of the second statement is only partially true.

But I digress, let's continue...

"But doctors around the country are telling patients with common medical problems such as back pain, poor concentration and fatigue that their ailments stem from a chronic form of Lyme disease that can evade standard treatment and wreak havoc for years. To fight what they believe is a persistent infection, the doctors often order months or years of intravenous antibiotics, which can cost tens of thousands of dollars."
Which doctors? Where? Who did you talk to and how much clinical experience did they have? What were their medical qualifications and certifications?  Had they read the latest academic research from the United States and Europe on Lyme Disease?

Which symptoms did these patients have in common with Lyme Disease symptoms? What were their test results? What were their medical histories? Had they been bitten by ticks? Were they at risk of having been bitten, even if they did not see or recall a tick bite?

Can a chronic form of Lyme Disease evade standard treatment and wreak havoc for years? 

Nowhere in this article do the authors try to investigate this question, which is pretty much THE question underlying the piece. Or it at least should be, if the authors want to support their position.

Did you ask a wide variety of doctors and patients about their diagnosis and treatment? Did you find out if any patients are only using expensive intravenous antibiotics - or are they using oral antibiotics instead - which can cost as little as $50 a month? Did you ask doctors and patients about diagnosing tick-borne co-infections and how they can raise the cost of treatment because they require additional medication to treat?

It would have been nice to see some attribution for this section and the basis for what they did actually print.
"Strong evidence isn't on their side. But in a golden age of dubious medicine, that doesn't matter."

And here is the beginning of a slippery slope.

The authors have not stated what evidence there is to support the existence of Chronic Lyme Disease. Nor have the stated what evidence there is to prove Lyme Disease cannot be chronic. They have simply made the statement that strong evidence isn't on their side.

And to emphasize where things are going next, the issue of dubious medicine is introduced side by side with this first statement - a statement which isn't even verified and proven to be true.

Show me the evidence! Tell me what evidence they have and why it is not strong!

Carl Sagan's saying "baloney" again, right about now, in his grave.

Carl wrote that the following two items (amongst a list of more) are suggested as tools for testing arguments and detecting fallacious or fraudulent arguments:
  • Wherever possible there must be independent confirmation of the facts.
  • Encourage substantive debate on the evidence by knowledgeable proponents of all points of view.
Okay, Tribune authors? Fail. 

You just haven't made a sound argument here. You are making a statement without backing it up with facts. And so far, I haven't seen any sign of the debate on the evidence using knowledgeable proponents of all points of view.
"These days, advocates can raise big money to "Unmask A Cure" for a disease that already has a cure, and doctors disciplined by medical boards are held up as heroes. Legislatures around the country are passing laws to prevent medical boards from disciplining doctors who treat what they consider chronic Lyme with therapies that clinical trials have shown are dangerous and don't work."
 This paragraph is logically inconsistent in light of what the authors said earlier. First, the authors said Lyme Disease is real and it is curable. Then they said Chronic Lyme Disease is not real. Now they're charging that advocates are raising money for a disease that already has a cure - when "Unmask A Cure" is supposed to find a cure for Chronic Lyme - which they earlier claimed is not real.

Well, which is it? Is this a real disease or not? Please make up your mind.

They write that state legislatures are passing laws so that doctors can treat Chronic Lyme Disease without being disciplined without any explanation of why the state legislatures would do this nor providing the history behind these laws. Why would the legislatures of multiple states do this if it caused serious harm to their constituents?

By now readers must be wondering why the states would choose to protect doctors which the authors are trying to condemn. But they are never given the full story, and are instead led to believe these states are somehow misled and ignorant in passing legislation that permits doctors to use "dangerous and unproven therapies" on them.

Repeating that particular part of the paragraph:

"...that clinical trials have shown are dangerous and don't work."

Which clinical trials? How were they dangerous? Why don't they work?  How were the trials designed?  How many patients were enrolled in the trials? What were their backgrounds? What were the original premises of the trials? How was the data reported?

The reader is left wondering what happened at those clinical trials and will never know from reading this article. The reader will have to dig deep of their own initiative, if they aren't already full of disgust at this point.

Next up, the authors mention the Institute of Medicine in October. Incredible.
"In October, a New Jersey congressman entered into the Congressional Record a statement from three nonprofit Lyme groups chastising the federal Institutes of Medicine for a "pervasive lack of objectivity" when it comes to chronic Lyme."
They knew about this, and yet how could they write about this New Jersey Congressman's statement without mentioning the actual tick-borne illnesses workshop being conducted in October by the Institute of Medicine (IOM) where the statement was made?

That is the event this very statement was about! How could they do that and not even mention the research that was discussed there, including research that pointed to persistence of Borrelia burgdorferi spirochetes in tissues and collagen? (The above link takes reader to a list of webcasts for all the presentations given at the IOM that day - something the authors could have easily cited and linked for more information.)

The next paragraph seems like a non-sequitur. The authors leap from discussing medical doctors and their records to suddenly switching horses and discussing alternative healers and unproven cures; from discussing the use of intravenous antibiotics and pharmaceutical drugs for patients who have Lyme Disease to patients who do not trust doctors and drug companies.

Um... What?
"Fueled by suspicion of doctors and drug companies, Americans are flocking to alternative healers promoting risky treatments and unproven cures. The Internet connects pseudoscientists with the desperately ill, trumpets I've-been-cured testimonials and often dismisses the results of clinical trials as the work of unsympathetic doctors corrupted by Big Pharma money."
So now we've moved on to conflating these doctors who treat patients with intravenous antibiotics for Lyme Disease with alternative healers and pseudoscientists.

Because, you know, when you've rambled off-topic already, you're on a roll and you might as well continue...

[ to be continued... part 2 coming soon...]


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