Sunday, December 26, 2010

3 Forum posting rules I do not understand

Hey folks, hope the past couple of days were good for you - and for those of you who are suffering from Lyme Disease, at least tolerably okay. The holidays can be tough when you aren't doing so well.

I was going to post a post-mortem piece here on the Chicago Tribune article, "Chronic Lyme: a dubious diagnosis", but something else came up I wanted to mention first.

And that is forum posting rules for Lyme patients.

Basically, there is one aspect of them I do not understand nor know how to work with. That, in a moment...

First, I understand the need for confidentiality in sensitive situations. I do. And when it comes to discussing my medical condition and doctor's advice in a forum, I keep our identities confidential when asked. I use a username, and my doctor is "my LLMD" or even just "my MD". When I talk about another LLMD, the phrase I use is, "another LLMD" or "another MD".

I get that. This rule has been used on a number of forums elsewhere.

However, I find it a bit jarring when I post about Dr. Raxlen and Dr. Ryser, when referring to the Chicago Tribune article which mentions them, and the moderator edits my post by changing their names both to "Dr. R".



Given that I discussed both doctors in succession, one paragraph after the other, it might lead the reader to think I was discussing the same doctor - when they are very different doctors with different backgrounds and experiences. And different genders. And different in other ways, too.

I thought to myself, "You could at least have changed one doctor to "Dr. R1" and the other to "Dr. R2", though, I admit, that second one sounds suspiciously like a character from George Lucas' upcoming sequel, "Doctor Droid: The Bot Flies" or something."

I didn't like the post-production editing of my post because I felt the way it was done could lead to confusion.

It confused me even more when I found that in the handful of posts I contributed to that the rule was arbitrarily applied, too.

Dr. Benjamin Luft is an academic physician - but more of an academic researcher, really. Recently mapped 13 genotypes of Lyme. His name got shortened to Dr. L in my post. I don't know why.

Dr. Allen C. Steere is an IDSA doctor, and he diagnoses patients and works in rheumatology, but his name did not get shortened in my post.

And then mentioning Dr. Steere causes issues with other doctors I know of in the Lyme Community who would have the same problem when their names are initialized.

I know of two Dr. S's... at least two. One is Dr. Stricker. Someone else on the forum wrote "Dr. Stricker" and his name did not get shortened.

And I know of more than one Dr. H, too. I think the count is up to, what, three?

But how can I write about them so that people do not confuse them with each other? It's possible other patients will think the wrong thing of the wrong people - or if I'm lucky, hopefully the right thing of the right people?

I think it would really solve the problem if people would determine that one Dr. S is Dr. S1, and another is Dr. S2, and so on. Or wait... would it? Because how do we know from post to post whether or not I've written something that's attributed to Dr. Stricker or Dr. Steere or yet another Dr. S?

Or what if someone else posts about Dr. S? Which Dr. S? One of my original two, or yet a third or a fourth Dr. S I'm not even thinking about?

Crap. That doesn't solve the problem, either. I don't want someone new to the forum to think I am writing something Dr. Steere wrote when it was Dr. Stricker, or vice-versa. They are two very different people.

Heck, I don't think using an initial solves the problem.

There's got to be another way.



I think it would be best if we did away with initials entirely. Doing so makes it less likely to lead to false attribution by people who are trying to guess which post is about which doctor.

Here's an idea, folks:
  1. Have everyone use "my LLMD" or the phrase, "I heard there's an LLMD who does ____" for mentions of an LLMD, unless the LLMD is mentioned in a publicly accessible online source in their own words and that is what you are posting about - for example: an interview with Dr. Stricker on Lyme Disease Research Database, a news article in the Chicago Tribune, a video with Dr. Martz on youtube, a clip of Dr. Jemsek from "Under Our Skin", a book review of Dr. Liegner's book on Amazon, or a publication found on PubMed (e.g. rebuttal letters by Dr. Stricker on IDSA Guidelines). If you're already referring to these things and linking to them, what is the point of writing an initial? The identity of the doctor is right there at the link.
  2. Have everyone use the doctor's name when it's a non-LLMD and it is referring to a publically accessible reference to them such as above. Example: "Dr. Sanjay Gupta is the CNN's chief medical correspondent on television", rather than "Dr. G is the CNN's chief medical correspondent on television". Otherwise, use "my MD" or "an MD".

I say this, not knowing a better way to deal with it when it does seem like the rule was arbitrarily applied at a forum I only just joined. If they applied "Doctor Initial" method to literally all doctors, I'd have less trouble with understanding the rule, but if they did, they still need a way to ensure the initialized doctors do not get confused with each other somehow.

Any ideas how to avoid this issue? Short of spelling out all doctors' names?


  1. Your idea is a good one, in theory. But most forum members don't follow 'the rules'. Usually not because they are trying to be perverse but because of-----a million different reasons.

    Even when 'rules' are stickied at the top of a forum, not many people either read them or remember to follow them.

    Here in YOUR blog (since you can monitor it) you can monitor it and eventually people will catch on. Thanks for trying!

  2. If I were running my own forum (not that I want to - heaven forbid, I think that's really too much work) I would at least try to consistently enforce the rules I'd written in my TOS. I'd give people a few chances to get it right and send gentle reminders when the members of the forum are unwell and cognitive issues are part of their condition. I think that's fair.

    Yes, I can set my own rules in my own blog, and right now I think the ones I just suggested sound pretty good. So to anyone reading this: Please follow my suggested names policy above. Thanks!

  3. Wanted to add another comment about the posting rule of using format:

    There's been a lot of concern about privacy of the LLMDs on the forums. And while I understand why, the truth of the matter is that reporters and other people who are less than scrupulous are going to glean these forums for information, and try to figure out if what a given "Dr. S" said or did and perhaps erroneously attribute it to the wrong doctor. I also know that patients themselves (and I admit, raising my hand here, guilty as charged!) will be trying to decode the doctor based on initial, and think that certain doctors believe or practice a certain way when they do not.

    I think these are both good reasons to move away from the initial model to the "my LLMD" and "I've heard of an LLMD who does _____" model.


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