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A recent study evaluated over 4,200 IDSA guideline recommendations and concluded that more than half—really?—more than HALF? were based on no more than expert opinion and anecdote, not evidence. As it turns out, only 1 of 7 treatment recommendations were based on high quality research trials. According to a recent article in Reuters, in the absence of a strong evidence base “the recommendations end up depending largely on who's on the guideline-drafting panel and any assumptions or opinions they may bring to the process.” The IDSA likes to paint patients who oppose its Lyme guidelines as “anti-science” misfits, but the truth is that patients just want some honesty and transparency. We’d like a little more evidence and a lot less opinion. We’d like more treatment options when the evidence is poor. Evidence based medicine is supposed to be about wringing the bias out of the process, but expert opinion is all about bias. One doctor who served on many IDSA panels acknowledged that “we are operating on a lot of bias. We recognize we have bias, but it’s impossible to eliminate when there is a dearth of data.” Well, this is clearly wrong. It is easy to acknowledge the lack of evidence and provide treatment options. Just like the prostrate guidelines do. More after the jump. .. .

Here’s an interesting approach to conflicts of interests offered by one of the fathers of evidence based medicine, Dr. Gordon Guyatt. The topic was guideline development and the interests of those serving on a guideline panel in having their pet theories and research promoted in the guidelines. Why is this important to researchers? It helps further the academic careers of researchers when their work is cited, referred to and used as the foundation for creating treatment guidelines. There is a dynamic tension between the use of expertise and the potential bias expertise may bring to the table. Those of us in the Lyme community are only too familiar with the fact that the IDSA guidelines were developed by academic researchers and that references to their own research dominate the guidelines. Being tied to a theory that your research has advanced creates a bias towards reinforcing that theory in the selection of evidence cited, the evaluation of that evidence, and the development of guideline recommendations that confirm that bias. Guyatt’s perspective is novel and interesting. In his mind the way to manage this bias is not to exclude the researchers from sitting on the guideline panel but to limit their ability to misuse their power to further their own ends. Hence, those with what he called a primary conflict of interest are precluded from chairing a guideline panel, drafting recommendations and voting on them and even the ranking of evidence. Read how he defines an intellectual conflict of interest and how he would restrict participation in guideline development by those with intellectual bias.

The cost of an illness includes medical and non-medical costs. Insurers bear the burden of medical costs for covered care, while society bears the cost of non-medical burdens. Saving a buck from insurance costs, only to spend 4 bucks on non-medical costs helps insurers at the expense of society. It really shifts the burden of an illness from the insurer to society. A recent article by Dr. Cameron makes this relationship in Lyme disease clear. The article "Proof that Chronic Lyme Disease Exists" was published as an open access article (meaning you can read it and download it without cost). He has done a thoughtful job pulling together statistics from a number of different studies to demonstrate the high rate of persistence of arthritis, neurocognitive impairment, neuropathy, skeletal pain and fatigue for years after treatment in patients diagnosed with Lyme disease. For instance, the rate of persistence of symptoms in patients after short term treatment for Lyme disease was 34% in Massachusetts.

Biased reporting harms the credibility of journalism, harms patients, and misleads the public. The recent Tribune piece, which is now being republished in other Tribune outlets (including the Los Angeles Times) distorts and manipulates reality and makes a ‘good story’ at the expense of professional journalism. It does this by ignoring science, and by characterizing patients as hapless victims and their physicians as frauds. It was called to task for its profound lack of professionalism by Knight Science Journalism Tracker. Articles on science that do not present both sides of a legitimate controversy in science do a serious injustice and may violate the canons of journalist ethics established by the Society of Professional Journalism. Today, I look at some of those canons and point out how the Tribune article fell short. More after the jump. . .

Lyme patients take a lot of heat, frankly too much heat. Sometimes reporters make errors, don’t have enough facts, and aren’t fully informed. And that is rough. But it is even rougher when reporters are informed and given the correct information and then ignore half of it. So what do you do? Well, CALDA has written the Chicago Tribune protesting the highly biased reporting in its December 8, 2010 article on Lyme disease. We have asked them to publish an Op Ed piece by CALDA. We believe that reporters have an ethical obligation to report on stories in a balanced manner. They also owe it to patients to set out both sides of a scientific debate. To do otherwise, puts the lives and health of thousands of sick people in danger. What do you think? If you are interested in supporting this effort, please write the Tribune (emails below). Ask them to publish an Op-Ed by CALDA to set the record straight. A tip of the hat to Ellen and the NYC Lyme Activism group for their wonderful work on this project. More information after the jump. . .

Some of you know Dr. Phil Baker, formerly of the National Institute of Health, currently of the American Lyme Disease Foundation—a group some regard as a front organization for the IDSA. (4 of the 7 ALDF directors were authors of the IDSA guidelines.) You might know that he oversaw the NIH Lyme disease trials. You might know he testified on behalf of the IDSA at the IDSA review panel—7 of the 8 panel members chosen by the IDSA were IDSA members. You might know that he characterizes the findings of that panel as “independent”, that he characterizes patients as vulnerable fools, and their treating physicians as predators. He has a certain viewpoint, it seems. But in his mind, there is no disagreement among gentlemen about science. It is odd for a man of science to refuse to read peer reviewed research to the contrary. In his mind, are there truly only heroes and villains? No real science. Well, then. Dr. Stricker and I rebutted his editorial and for once, it is available on line. I quote a snippet and then give you the link for the response and counter, counter, counter—whatever…

If you are a journalist, is it sufficient to talk with a number of people and then disregard half of what you hear? How about if you only disregard all of the science supporting one side of a scientific debate? If you replace the opposing side’s science with ad hominem attacks? Are journalists supposed to “choose sides” in a debate? If you do, is it journalism or an editorial? What about the obligation to tell a balanced story? One always hopes that journalists will take their responsibility to inform the public seriously and tell the complete story. These reporters did not.