LNE Forum Policy and much much more

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Spanky
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Re: LNE Forum Policy

Post by Spanky » Sun 14 Oct 2012 21:25

"Carina":

Spanky: Put a sock in it.*


* Means: "what Bagge said".
Yes, I know!

Well, feel free to try it out sometime.

You never know until you try...

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Spanky
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Re: LNE Forum Policy

Post by Spanky » Sun 14 Oct 2012 23:07

Spanky:
Just to be clear, here, Carina...I am not saying that any ONE poster was responsible for Henry's quitting...
But also to be clear...there was ONE poster who seemed bent on harassing, badgering and trying to drown out what Henry had to say...

...when some of us wanted to hear very much what it was that he had to say.

And some of us did not care for that and wished that the Admin had taken a more active role and seen fit to intervene before it was too late...and were wondering why on earth he didn't...and are still wondering...

Perhaps a learning experience?

Perhaps not...
Last edited by Spanky on Sun 14 Oct 2012 23:20, edited 1 time in total.

X-member
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Re: LNE Forum Policy

Post by X-member » Sun 14 Oct 2012 23:15

Spanky:
Well, feel free to try it out sometime.

You never know until you try...
I will remember the above the day I have forgot all the other words I know. 8-)

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Re: LNE Forum Policy

Post by X-member » Sun 14 Oct 2012 23:21

When you, Spanky write "chronic Lyme" (as you did in another topic, and maybe in many other places in this forum), how can people (especially if they are from Europe) know (for sure) what kind of chronic Lyme you talk about?

Have you perhaps written it somewhere? In that case it can be rather easy to just link to that topic or post, everytime some "irritating" person from Scandinavia, Europe or maybe even Russia don't understand (exactly) what you talk about?

Bagge
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Re: LNE Forum Policy

Post by Bagge » Sun 14 Oct 2012 23:28

Carina wrote:When you, Spanky write "chronic Lyme" (as you did in another topic, and maybe in many other places in this forum), how can people (especially if they are from Europe) know (for sure) what kind of chronic Lyme you talk about?

Have you perhaps written it somewhere? In that case it can be rather easy to just link to that topic or post, everytime some "irritating" person from Scandinavia, Europe or maybe even Russia don't understand (exactly) what you talk about?
.

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Re: LNE Forum Policy

Post by X-member » Sun 14 Oct 2012 23:29

Thank you, Bagge! ;)

Camp Other
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Re: LNE Forum Policy

Post by Camp Other » Sun 14 Oct 2012 23:45

radicale wrote:I am not really sure an online forum is an appropriate place for experts to discuss Lyme Disease with the lay public. Furthermore, if they do then they really need to expect circular comments from a select few and should ignore them. Trying to micro-manage people and situations is destined for failure.

I am sure that sensible information from any expert will always be appreciated by a portion of the users, and as such the experts should focus on that.
One of the issues I have is that the lay public at large does NOT see what the experts think about Lyme disease and gets its information about Lyme disease through a number of translated layers and filters from different sources in the media, advocates and their detractors, and the average Joe on the street who's being asked for their opinion on the spot.

The issue is the lay public is, I think, mostly NOT getting information directly from experts - more specifically, they are mostly not getting information on the Lyme disease controversy from the very scientists and microbiologists involved in directly studying the organism causing the disease.

And as soon as the IDSA/ILADS rift is pointed out - that is, as soon as the focus becomes politics and conflicts of interest on BOTH sides of that fence, no matter which "side" you are on - the more the focus tends to shift on to either the IDSA or ILADS and NOT on what the science itself has to say about Borrelia burgdorferi s.l. Which is, in my opinion, where the focus ought to be.

As far as the issue of chronic Lyme disease is concerned (where I mean persisting post-treatment symptoms regardless of evidence of current infection), this is one issue where there is a need for more research and discussion and not less, and by extension, more education.

I think it's important to have a forum where experts can put forth their opinions in their own words and refer to the evidence they are using to support those opinions. Perhaps what's needed, though, is a forum where the lay public can observe the arguments about the evidence go on without the inclusion of the lay public's own opinions - and then perhaps have a separate area elsewhere the lay public can ask the experts questions and ask them to clarify their positions.

At any rate, I'd rather have that kind of forum exist than have my information about Lyme disease and chronic Lyme disease be spoon fed to me through online newspapers and information clearinghouses. I'd rather have the option to see highly educated intelligent people argue about the subtleties and finer points about Lyme disease research - even if no clear conclusion can be drawn about what to do with those arguments in a practical sense - than to not see this option at all.

admin
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Re: LNE Forum Policy

Post by admin » Sun 14 Oct 2012 23:59

Camp Other wrote:I think it's important to have a forum where experts can put forth their opinions in their own words and refer to the evidence they are using to support those opinions. Perhaps what's needed, though, is a forum where the lay public can observe the arguments about the evidence go on without the inclusion of the lay public's own opinions - and then perhaps have a separate area elsewhere the lay public can ask the experts questions and ask them to clarify their positions.
It's possible to do that on this forum. It's possible to create a section, call it for example "Experts forum" and only grand access to users who are experts.

However, there are issues with this. To be sure users are experts they should identify themselves, at least to me, and I think many do not want to do that.

I also wonder if the experts are interested in such, maybe most prefer if discussions are joined by well-informed laypersons who are capable of a substantial scientific discussion.

radicale
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Re: LNE Forum Policy

Post by radicale » Mon 15 Oct 2012 0:09

Thanks Camp Other for expanding upon the discussion.

I can add one more personal take on the whole Henry controversy with special emphasis on the discussion between experts and the lay public.

I have brought up several questions regarding confusing Lyme Disease diagnostic and treatment findings for which I would love an answer and clarification. They can be found

here,here,here

and even pleaded for others (at one point specifically Henry) to comment on the validity of these concerns without any feedback. My questions fell on deaf ears. In my eyes it appeared that the experts had only one goal, maintain the status quo. How this can be beneficial I will leave as a rhetorical question?

Camp Other
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Re: LNE Forum Policy

Post by Camp Other » Mon 15 Oct 2012 0:12

admin wrote:
Camp Other wrote:I think it's important to have a forum where experts can put forth their opinions in their own words and refer to the evidence they are using to support those opinions. Perhaps what's needed, though, is a forum where the lay public can observe the arguments about the evidence go on without the inclusion of the lay public's own opinions - and then perhaps have a separate area elsewhere the lay public can ask the experts questions and ask them to clarify their positions.
It's possible to do that on this forum. It's possible to create a section, call it for example "Experts forum" and only grand access to users who are experts.

However, there are issues with this. To be sure users are experts they should identify themselves, at least to me, and I think many do not want to do that. I also wonder if the experts are interested in such.
True, you could do that and see who is willing to come forward and discuss Lyme disease from the position of an expert. You'd have to decide the criteria for an expert and post that, making it clear which credentials were verified, too. People have to be willing to post under their real names and be willing to forego anonymity.

I think I wasn't even specifically thinking of LNE when I said what I did. It's more of a general desire: I'd like to see the experts themselves do this - have the microbiologists, immunologists, pathologists, etc. who study tickborne related diseases and their causative agents start their own forum, and allow us to be witnesses to their discussions. And then have a separate location - perhaps even on the same site, but different forum - where patients and the public can ask experts for clarification of their points in the expert section - rather than be given an interpretation of what said expert said by another non-expert.

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