Lyme disease, science, and society: Camp Other

Saturday, December 18, 2010

0 Part 2: Critique of Chicago Tribune's "Chronic Lyme Disease: a dubious diagnosis"

[ Ed. - This entry is part 2 of the first entry of the critique on the Chicago Tribune's "Chronic Lyme Disease: a dubious diagnosis". ]

And so, when we last left off, the authors were conflating professional medical doctors who treat Lyme Disease with intravenous antibiotics with alternative healers and pseudoscientists.

The authors wrote:
"Google "ALS" and "treatment" and results include a site touting deer antler therapy for amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. Google "cancer" and "alternative treatments" and you'll find a "grape cure," among others. Message boards are packed with patients trading treatments, often including detailed prescription information."
What does this have to do with Lyme Disease, chronic or otherwise? What does this have to do with its existence as a disease?

The internet is an opportunistic market. Alternative treatments both proven and unproven are promoted and sold ad nauseum all across the internet, both for conditions modern medicine does not have a cure or treatment for and for ones it does.

Why single out Lyme Disease in the mentioning of this, unless there is something significantly different about how alternative treatments are marketed towards those with Lyme Disease?
"In this world, skeptics are vilified as part of a vast conspiracy involving tainted government agencies, drug companies, the media and conventional physicians."
So, in part 1 of my critique of this article, the authors mentioned that patients were seeing medical doctors in order to get diagnosed and treated for Lyme Disease - a treatment which entails antibiotics whether or not the condition is chronic.

Now the authors are talking about skeptics who are vilified (which skeptics? who are skeptical of what, exactly?) and that skeptics are part of a vast conspiracy involving tainted government agencies (which ones?), drug companies (which ones, and why, if antibiotics are the primary treatment used to treat Lyme Disease?), the media (which part of the media? any specific outlets?), and conventional physicians (which conventional physicians, and why are they being vilified?).

It's an awkward segue that requires a smoother transition: Why are the authors speaking about doctors who prescribe intravenous antibiotics at one point, then talking about skeptics who do not trust drug companies and conventional physicians at another? 

Antibiotics are the product of the modern pharmaceutical revolution and have made our lives better; physicians use them all the time to treat anything from a mild infection to life-threatening ones. If you're skeptical of Big Pharma and you're using antibiotics, then you have chosen the complicated position of recognizing that the pharmaceutical industry has its good and bad side and you are benefiting from it.

"Scientific studies are cited but are invariably of poor quality or misinterpreted. Patients are directed to small specialty labs offering tests that can be misleading."

Again, this is something I asked further upstream: Which scientific studies are the authors thinking of when they wrote this statement? Why are they of poor quality or misinterpreted? Could the authors find studies which both supported their position as well as studies which refuted it?

The authors provided no information, no citation or attribution to back their statement.

And which speciality labs offering these tests were patients directed to? Why were these tests considered misleading? Were they fully accredited labs? Did they pass inspections? What were their own internal operating procedures and standards? How well-trained were their technicians? On which data did they base their testing profiles? How did these labs compare to other labs on each point?

The authors decided to switch horses again, proving there is a possibly a 20-mule team involved and no longer a small carriage:
"And advocacy groups are aggressive and sophisticated about spreading their messages, raising money and influencing state and federal lawmakers."
What relationship does this mention of these advocacy groups have to any of what was just written about skeptics of the government, drug companies, and conventional physicians?

From what I have read so far, this is a separate issue. Those who are suffering from an illness that needs more research and fund-raising are by nature going to be aggressive and sophisticated about spreading their messages -- although I'd have to say "aggressive" is a pretty strong word the authors need to demonstrate.

Patients suffering from many different conditions and their families have had to repeatedly ask for more funding to fight cancer in all its hideous forms, to battle multiple sclerosis, to get attention for diabetes, and to petition the government to change its stance on issues such as stem cell research in order to improve the lives of many. The process for spreading awareness and getting support is no different for those patients and their families who are affected by less-understood and less-researched conditions such as chronic fatigue syndrome, fibromyalgia, Gulf War Syndrome, and persisting forms of Lyme Disease.

I charge that these things -- the treatment of Lyme Disease by medical professionals and those who are skeptical about Big Pharma -- are entirely separate from the issue of patients advocating for themselves.
"There is no better example than the world of chronic Lyme, a disease that might not exist and one for which the most common treatment, months or years of antibiotic use, poses a threat to us all by sapping the power of those drugs to fight disease."
The authors make the statement that Chronic Lyme Disease might not exist.  Which also means that it might exist, too. Either way, they still have not brought any evidence to the table demonstrating that it does or does not exist.

Because there is doubt inherent in the phrase "might not exist", if evidence does point to its existence, then by denying infected patients proper treatment, the authors condemn them to disease, suffering, and possibly death. If patients are infected, they need antibiotics. This is the purpose for which antibiotics were made - no one says it is a good idea to take someone off antibiotics in the middle of treatment for tuberculosis, and the standard treatment for that is many months of antibiotics - over a year of treatment sometimes.

And arguably, compared to the fraction of the population who are treated for Chronic Lyme Disease, there are bigger fish to fry when it comes to use of antibiotics: the modern factory farming system. Hundreds of thousands of animals are packed into crowded conditions and fed an ongoing diet of antibiotics from womb to slaughterhouse. This is where resistance starts on a large scale, and where change should first be addressed.

If Chronic Lyme Disease does not exist,  the authors have still not made any convincing argument proving it does not. So far, it is conjecture and opinion.

The article continues:
"Kimberly Frank describes herself as always "going, going, going" before she got sick about 10 years ago. At the time, she was running two bridal shops, raising her four children and caring for two foster children.

Then the Ingleside mother developed crippling fatigue and an array of symptoms that baffled doctor after doctor. She says a physician diagnosed her with multiple sclerosis. Later, a different one told her she had Lyme disease."
 This woman went to doctor after doctor. Either she didn't accept the diagnosis, or the doctor misdiagnosed her, or it was hard to diagnose her condition. Perhaps all of the above. How does the reader know which doctor is right?

By now, the reader may not be sure what to believe, but for anyone who has had their own battles in getting the proper diagnosis, this should be a familiar story.
"To feel better, Frank says, she has taken up to 76 pills a day. She says she has been on oral or IV antibiotics for three years. Two of her children also have Lyme, she says, and have been on antibiotics."
Seventy six pills?  How many of them directly relate to her Lyme Disease versus other conditions? How many are supplements not prescribed by a doctor?

Did the authors interview her doctor? Do the authors have confirmation of her condition and that of her children? Do the authors understand which tests were taken and the medical reason given for treating with antibiotics?
"Frank, who runs a northwest suburban Lyme support group, told the Tribune in an interview that she suspects Lyme is "man-made" and was developed at the federal Plum Island Animal Disease Center in New York."
This kind of statement, unfortunately, is what makes any patient look a little cracked. When the fodder of Jessie Ventura's conspiracy theories are part of the interview - whether there is truth behind those conspiracy theories or not - the interviewee's credibility is questioned by readers.

Between statements about taking 76 pills and Lyme being man-made, the patient loses credibility, and by extension, the disease does - especially when the authors do not investigate the facts and let the statements remain without comment for the reader to make their own deductions.
"Frank says Lyme is tragically underdiagnosed, that tests endorsed by the Centers for Disease Control and Prevention are unreliable, and that research into the disease will unlock many mysterious and devastating illnesses."
 Here are facts that authors could more reliably research and report on, but do they? They do not. They do not even look, when just a few minutes using Google would tell them both sides of the story regarding CDC case definitions and surveillance of Lyme Disease, testing, and research done on testing for Lyme Disease.

[... to be continued... Part 3 coming soon...]

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