Journalistic Fail: Look Through the Keyhole!

Today, the Washington Post has a piece about Lyme Disease in their health section: "Ticked Off Lymies Challenge Experts", by Maura Lerner

Synopsis:
A woman who was treated with a short course of antibiotics for Lyme Disease, was devastated three months later when her entire body went numb and she was diagnosed with MS. She learned about the possibility of treating her condition as Lyme Disease, did a 14 month course of antibiotics and recovered her health.

An infectious disease specialist from the Infectious Disease Society's (IDSA) Lyme Disease Panel in 2006, says that politicians are practicing medicine by passing legislation related to Lyme. He says this woman's treatment "makes no sense" and that the long-term use of antibiotics is dangerous, as there is no evidence it works.

A second doctor, a family practitioner, says the antibiotic question is not proven one way or another and you have to do something for people who are still suffering after a short-term treatment.

A third doctor, another infectious disease specialist, says that many of these people who claim to have Lyme don't have it.

Finally, the patient in the story says she doesn't care about their medical debates, she knows she had Lyme and she knows the treatment worked for her.


Review:
Quoting members of the IDSA:
I'm glad to see that Ms. Lerner at least mentioned the anti-trust investigation against the IDSA's 2006 panel. It is a vast improvement over quoting them as the experts without mentioning this at all.
Still, it falls short of clarifying why this investigation is so important. Also, I wish she would do more and get the particulars on the conflicts of interest. For instance, did Dr. Bakken have any conflicts of interest? (Almost every one of them on the panel at the time did.) It profoundly impacts whether you deem his opinions credible.

Why was the IDSA panel investigated?:
The investigation of the IDSA wasn't solely about conflicts of interest. The key reason for the investigation and resulting antitrust settlement was this:

The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.

If you're writing a journalistic piece and quoting someone from a panel which has been investigated by an Attorney General, aren't you obligated to speak to the AG about said investigation? To understand why he pursued it and what he found? It's not an every day occurrence, a medical panel being investigated this way and being forced into a settlement agreement. In fact, it is unprecedented.

Isn't it your job, then, to explain to your readers why this is so important? Your readers need to understand how conflicts of interest and suppression of evidence impact people's lives. We're not talking about whether a new color of M&M's is a stolen formula from Skittles. People are losing their abilities to function. They are sick and dying.

These guidelines issued from these medical panels are used by the CDC, the insurance industry and doctors to determine if someone has a particular disease and how to treat it. If the process for creating those guidelines is corrupted it has a profound impact. Patients deserve better. They have the right to the best possible understanding of their disease and how to treat it, regardless of who might make money or who is protecting their reputation.

There is more than one Lyme-related medical society:
Ms. Lerner gave the weight of an entire medical society to the opinion held by Dr. Bakken. She then treated Dr. Malloy's opinion as that of a single practitioner. If Dr. Malloy were alone in her view, some rogue doctor, well that would be appropriate. However, this is not the case. In fact, there is another medical society who views the evidence about Lyme Disease quite differently from the IDSA. They are called the International Lyme and Associated Diseases Society (ILADS). Proper journalism would require that you check out whether the IDSA is the only organization that investigates the science and renders an opinion about this disease.

Where are the references to ILADS, Ms. Lerner? Why is the conflicting opinion presented as such an outlier?

Unchecked accusations:
When doctors accuse politicians of "practicing medicine", aren't you obligated to investigate whether politicians are? Why do you let that accusation stand?

The AG's report on his investigation makes it clear that he is not "practicing medicine". Rather, he is shining a light on the investigative process of a panel which wields a lot of power in the world of medicine. You don't have to be a doctor or a scientist to assess an investigative process.

Legislators are not practicing medicine, either. They are protecting doctors and patients who are being victimized because of a corrupt process that generated "guidelines" which are being used as law. In fact, doctors and insurance companies could be accused of practicing law. Legislators are taking back the power to practice law.

What do I mean? Well, doctors who subscribe to the IDSA rule of law will file charges against other doctors who are trying to treat patients with Lyme Disease. The sole justification for these charges is that the treating doctor is not following IDSA guidelines. But, if they are "guidelines" and not "law" then why isn't a licensed doctor allowed to treat his patient as he sees fit? Let's be clear, it is not the patients filing these charges. In many of the cases, the patient got better under the accused doctor's care. It is insurance companies (because they love any justification for denying care) and other doctors. They are testifying against doctors at state medical board hearings. That's a legal venue.  So, they are stepping out of their role as medical practitioners and into a role as some kind of anointed deputy.

What legislators are doing is looking at the process, wherein the IDSA panel suppressed evidence, and saying, "You can't then use the results of that process to legally punish doctors and deny patients treatment." They are not dictating how a doctor must practice medicine. They are dictating how the law is being applied to doctors. That is their jurisdiction.

Don't leave accusations unchecked, Ms. Lerner.

"Makes No Sense" and "Probably don't have Lyme"
These are not quotes based on facts. They are steeped in opinion. How about challenging those opinions? If Ms. Backes was diagnosed and treated for Lyme. When she later became ill, there was no other diagnosis but MS. However, ILADS, the Lyme and Tick-borne Disease Research Center at Columbia, the American Journal of NeuroRadiology, the National Center for Biotechnology and many  more, recognize that Neuroborreliosis (Neurologic Lyme) can look like MS. So, why does it "make no sense" that this woman would have been told she had MS and then, in an attempt to see if she actually had something treatable - since she did have a history of Lyme Disease - was cured with a treatment for Neurologic Lyme? And, how do you explain her recovery from supposed MS? It sounds like a throw away opinion given by someone who doesn't want to face that his view on the subject might be incorrect. Shouldn't he be questioned on that?

Then we have another infectious disease doctor who proclaims that  "many of these patients probably never had Lyme disease at all".  Wow. Now he's diagnosing patients he's never seen. According to the CDC, Lyme Disease is a clinical diagnosis.

Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks.  Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans.  For detailed recommendations on serologic testing, click here.

When making a diagnosis of Lyme disease, health care providers should consider other diseases that may cause similar illness.  Not all patients with Lyme disease will develop the characteristic bulls-eye rash, and many may not recall a tick bite.  Laboratory testing is not recommended for persons who do not have symptoms of Lyme disease.

How is this doctor allowed to make such a spurious claim about thousands of patients whom other doctors have seen and he has not? Just because it doesn't suit his worldview about Lyme Disease? Why do we even report such an unsubstantiated claim?

Did you ask him about all the patients who have never tested positive for anything else, but have tested positive for Lyme? Why are they denied treatment if they continue to have symptoms after the short course of antibiotics? There is no scientific proof that a) a short course of antibiotics definitively cures a human patient of Lyme Disease and b) that persistence of the disease is not possible. So, when a patient is found to have Lyme Disease and isn't cured with the proscribed treatment, why do you assume that it must not be Lyme? That simply defies logic.

And what about the myriad cases of ALS and MS that have miraculously been reversed with long-term antibiotic treatment? Or the prevalence of co-infections?

In this short piece of journalism, Ms. Lerner has actually done more justice to the doctors and patients fighting Lyme Disease than many other journalists have done. Still, it falls far short of informing the public about what is really going on. It doesn't begin to get out the way money and ego trump the needs of patients. How vulnerable people, disabled by a horrible disease have to muster the wherewithal to fight tooth and nail for a chance to regain their health.

The keyhole into this mysterious world is the investigation done by Attorney General Blumenthal. Journalists need to look through that keyhole and bust open the door.