tosho wrote:I think that the title of this thread is very unfortunate. It is strange for me how quickly the conclusion of "diagnosing one million new cases of Lyme Borreliosis in the Germany" has been drawn based on the statement: "The annual number of physicians' billing cases in Germany has now reached one million" plus some other snippets of various articles. In my opinion, this is not the way a reliable information is created.
I agree. In science, one should be precise. Politically speakiing, it's important for dissenters to be especially meticulous in their claims. Even though the Lyme establishment is not careful in this way.
Well, then I think that one has to be clear on the following, then:
- There really weren't even 1 million billing cases for Lyme disease to begin with if the original figure was over 700,000 and rounded up to 1 million.
- That whether it's 700,000 or 1 million billing cases, the number of billing cases
does not equal the number of individuals diagnosed with Lyme disease who were associated with the billing.
- That regardless of the number of cases that were billed for, we still won't have a hard number of cases no matter what we do because Germany doesn't require Lyme disease to be reported, and even if they did, some cases of Lyme disease may be misdiagnosed or the patient's symptoms are initially so mild they don't see a doctor. So there is the unknown "fudge factor" that comes into making an estimate of the actual number of cases.
I wonder if privacy considerations keep this kind of data (called "adminstrative claims data" in the US literature) from being analysed as to how many of these visits represent new cases, versus repeat visits. That would be helpful. There is no way of knowing how many people who have contracted LD don't visit a doctor, or don't get that diagnosis, either; this happens often, in the US at least. The analysis of administrative claims data deserves its own thread; I found a whole vein of the medical literature devoted to it, which we can discuss in another thread.
In the US, there's the CDC reported confirmed cases and probable cases for Lyme disease, and outside of that, there are other surveys which are done which offer an estimated number of visits in a given period of time for a certain condition diagnosed at major medical centers across the country. I don't think the latter data set is broken down into individual cases, though - it is still a data snapshot.
This may be slightly off topic, but I think it's important to consider why there is such a tendency in medicine, to assert strongly, conclusions that are not strictly warranted by the available evidence. We see that in the American Lyme disease literature, from the moment Yale stepped in. The representatives of the Lyme establishment, on this forum, do this routinely. Sometimes the science-based ILADS doctors do it, too, though I find them generally to be willing to discuss evidence and the pros and cons of various treatment options, instead of saying "I'm the boss, this is how it is". That's why I, as a scientist and patient care-giver, prefer them. I've never had a good scientific discussion with an IDSA-supporting doctor; even if they're polite, they always fall back on authority and assertion. To a scientist, that means they are not thinking, but reciting and obeying orders.
I have problems with both IDSA and ILADS massaging the data or giving their own interpretation of it. The issue on both sides of the fence, to me, is lack of transparency when it comes to expert opinion. When someone rates the evidence supporting their approach according to "expert opinion", that's black boxing it, because you can't see how that individual expert came to the conclusion that they did and the strength of the evidence they used to draw the conclusion.
Here. I'll offer two statements, one from IDSA and one from ILADS:
1) Less than 10% of individuals do not respond to antibiotic therapy, as evidenced by the presence of objective clinical manifestations, and rarely is re-treatment required. - 2006 IDSA Lyme disease treatment guidelines
2) If early Lyme disease is not adequately treated and it goes on to be chronic, it cannot be cured. (rough paraphrase from conference) - Horowitz
In both of these statements, neither party offered evidence to support their statements. I don't know where they got these ideas and what information they used to determine that these statements are true. The content of both of them are of concern, and depending on what side of the fence you are, you will likely look at each of these statements with a different kind of concern.
While I'm more comfortable with being able of having a reasoned scientific discussion with my doctors - and people in general - when faced with statements like these from anyone without supporting evidence, I am not comfortable any more. I question everything.
If one suggests an interpretation of observations, there is room for discussion and refinement within the community of scholars and observers "in the field". But if one asserts an interpretation, you get into emotionally-charged arguments like this thread, and like the American LD literature (which European medicine unfortunately has adopted). People's egos get involved, and then hurt or angry feelings are the driving force, rather than cool and reasoned examination of evidence. None of us are free of ego, so it is common sense that we should avoid triggering a battle of wills, by being polite and moderate in our words. Once a shouting match erupts, it's hard for reasonable people to be heard above the drama.
I agree. Maybe a meta discussion about why any of us interpret the significance of a statement or fact the way we do would be a useful exercise. At the same time, I'd like to observe that because there IS a set of polarized opinions out there about Lyme disease, I think each of us may assume or predict what the other party (who is perceived to be on an opposing end of the polarization) is going to say before they say it. Which is problematic.
For example, if I say I don't think 700,000+ billing cases = 1 million individual reported cases of Lyme disease, someone who is looking for anyone to downplay the serious nature of Lyme might think I am trying to say that there aren't that many cases of Lyme disease out there and label me as being not supportive enough of patients. This gives other patients the idea that I'm not on their side. But if I turn around and say that there are probably more cases than are actually billed for or diagnosed in a doctor's office, then patients think why yes, I am supporting them - and then those who make more conservative case estimates - perhaps IDSA supporters - think I am now being soft and perhaps even a Lymenut.
The truth is, both things can be a statement of fact: There can be fewer cases of diagnosed Lyme disease which are reported than the number of bills generated by them and the actual number of cases may be higher than those which are reported.
There's no inherent conflict there. The questions to ask are "What does the data support, and how accurate, in fact, is the data we have?" That leads to an entirely different discussion, on a different level than where we've been.
(More later, perhaps - I have to run.)