Friday, September 2, 2011

0 On Explaining One's Position

I recently received a comment on a post in the past from someone who has identified as a skeptic, condemning this blog for offering any support for chronic Lyme disease as a concept. I'm not specifically linking to it now, but mention it on general principle because I think it reflects a misunderstanding on what I'm trying to do and my position in the controversy.

I mention in numerous places throughout this blog that I have a skeptical nature, and I have also had persisting symptoms since I contracted Lyme disease. I've stated that I think chronic Lyme disease could happen under specific circumstances, and I do not know how common that is nor is it clear to me what all such circumstances are. I've also stated that I'm not sure chronic infection is always the cause of persisting symptoms. I simply don't know.

Because of my background and who I have been, I have found it difficult to stand in the middle of the Lyme disease controversy and ask the basic question of, "What is this all about, anyway?". But that is the question I am asking, and while I have a lot of readers who are supporters - because I haven't firmly fallen into one camp, I have detractors, too.

On one hand, I can potentially be viewed suspiciously by some Lyme disease patients because I do write about autoimmunity and Lyme arthritis, and I do wonder if the disease itself leads to changes in the immune system which lead to chronic symptoms. The latest research on B cells in lymph nodes certainly align with my musings about this... On the other hand, I can potentially be viewed suspiciously by those who align with the IDSA because I think Lyme disease may be able to persist as an infection... Barthold's research on surviving spirochetes after antibiotic treatment in a mouse model can point to the possibility of persisting infection.

In a way, I really can't win. Someone is going to take issue with something I write regardless of what it is. And that's fine - I give them a venue to express their opinion even though I may disagree. Or perhaps I don't even have an opinion on a particular topic yet, and whatever information they are sharing isn't something I was aware of before they mentioned it.

My goal here isn't to always find consensus - though I appreciate and welcome it when it is found; agreeing on some ideas can be a form of progress provided the evidence is sound. My goal here is to learn about facets of this disease and tickborne illnesses in general, and how they impact society, individuals, and research, and what is the relationship between each of those aspects.

I actually wish more skeptics would drop by for a visit, have some scotch or a coffee, and just share what research they have under their belt which supports their view and knowledge which reflects their understanding of it. It is easy to say, "You're making a mistake in supporting the chronic Lyme disease model". Criticism is easy to come by, and attaching that criticism to the letter which was posted to the Lancet recently in no way supports the science underlying your position.

If you don't support the concept of chronic Lyme disease as possible, okay, but at least explain why you individually do not and give reasons about it from a biological, microbiological, and molecular biological point of view. That would be educational for everyone reading along.

That gets the focus back on the reason for controversy to begin with: A dispute over what is happening in patients with persisting symptoms.

We may actually agree on a number of points, even if I don't agree with you on all of them. But whether we agree or not, discussing conflicts of interest from either the ILADS camp or IDSA camp sidesteps the issue of what the research out there reflects about what is known and unknown about Borrelia. Where does the definitive knowledge about Borrelia end and where does the speculation begin? What is inconclusive? What requires more research at this point in time?

I am looking for common ground at times because I am tired of the controversy. And I am also looking for any tie breakers: Is evidence in category A stronger in this instance than it is in category B? What is the weight of the evidence? What if there isn't a preponderance of evidence yet?

So, this is the basis on which I want to engage in discussion with people on this blog. I can talk about the social aspects of it on a social post, and the political aspects of it on a political post - but mostly, I'd like to steer things back to what the data reflects and what results are. (And also what isn't reflected in the data and results but has yet to be known.)


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