Estimating Distribution, Abundance, and Medical-Care-Migration Patterns Of Northern Rockies Lyme Disease Patients?

Not really.  At least, not just yet.

But we are building a preliminary map, for which we currently need your assistance.  If you have lived with or may have contracted Lyme disease in the Northern Rockies (MT, WY, ID, ND, SD, BC, ALBERTA, SASKATCHEWAN) please share the location here. (You can find other ways to help us in the short term, including awareness opportunities here and via other groups, by watching for related pages and requests, including our first request linked here.)

We are certainly wondering about those things in the title (though we are not implying we can actually tackle these questions here). The actual purpose of this article is illustrate that we have reasonable expectations regarding the value vs. limitations of the information our initial map will provide and the importance of asking and answering the right questions over time.

Actually estimating any of these would be extremely difficult, from a statistical, medical, political, and study design perspective.  Estimating or actually determining these would hopefully help us illustrate and resolve at least some of our biggest obstacles to diagnosis and care.  But these are pretty enormous questions.

Interestingly, however, it is quite possible that mapping occurrence and distribution of ticks by species and state/province (another important hurdle in illustrating and resolving obstacles) can range from equally to far more complicated (and very likely even more costly).

In the world of terrestrial ecology, distribution, abundance, or presence/absence estimates with a statistically satisfying degree of certainty are very expensive and usually require extensive and lengthy efforts.  For ticks, this would not likely be achievable under any current or reasonably foreseeable state or federal agency annual budget because the level of survey effort would be enormous and the degree of pre-data needed (to determine factors such as probability of detection) for even (or especially) the presence/absence aspect of the question is just not currently available in most cases.

We’ll discuss survey effort, statistics, study design, and the importance of survey data in later articles for those interested.

Why?  Because there are many questions pertinent to better diagnosis and care that are tied to these issues when it comes to ticks and to patients.  Some of these questions are not being answered and some are not being asked.

Do you have to be interested in or experienced with these issues to help achieve our goals?  Absolutely not.  But we will be working together and reaching out as far as we need to in order assure we are asking the best questions we can, when we reach those parts of our mission.  Or that we can help others frame the best questions when opportunities arise.

We will also help each other understand what information is important and why, and recruit the best people to help, because it makes us all more effective, in all areas of the things we will be working and collaborating on.

To answer the questions that matter most, we need to identify them and also to carefully, diligently, and properly frame them.  There are multiple groups at state and national levels that have done this very well over time, and we trust (and in some cases already know) that they will assist us with this as well.

Stay tuned for an illustration of this point, coming relatively soon, in the form of a gripping discussion of the difficulties of estimating tick distributions and the paramount importance of asking the right questions (readers will have to insert their own values here when interpreting those italics, based on their personal degree of enjoyment of basic ecology, statistics, and logic).

I can’t guarantee it’s enjoyable, but I can guarantee it’s important.

There are many moving pieces to making the situation better, but better answers to the wrong questions can undo any amount of great work and effort, or keep us stuck in the wrong discussions.

Other articles coming soon are mostly not related to these topics, and include:

  • Further requests in preparation for the Mayday Project rally in Arlighton and our May 1 launch;
  • The first featured Lyme Disease Challenge video from Wyoming and a bit about it’s makers;
  • The first featured Lyme Disease Challenge event from Montana (if you haven’t seen any photos on line you probably would not correctly guess what it involves).

Please stay tuned and THANK YOU for visiting this evolving site.

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