Why the heck are so few European people on this board?

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Martian
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Why the heck are so few European people on this board?

Post by Martian » Thu 31 May 2012 19:37

CO wrote elsewhere:
Camp Other wrote:This is somewhat off topic, but I wanted to ask: Why aren't there more European Lyme disease patients and researchers on this forum to begin with? It seems that most people who are posting are from North America. And perhaps that's another question I wanted to ask: How is it so many North Americans are posting here when it's supposed to be a European site?
Yes, intriguing questions!

Where the heck are all the European Lyme patients, researchers, physicians, etc. who are interested in uncensored information and discussion about Lyme disease? Or are many of them only lurking this board?

And indeed, secondly, how come this board is propagated with people from the United States?


BTW: also see poll What continent are you from? and topic World map of visitors of LymeNet Europe.


edit: added BTW
Last edited by Martian on Thu 31 May 2012 21:32, edited 1 time in total.

RitaA
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Re: Why the heck are so few European people on this board?

Post by RitaA » Thu 31 May 2012 20:37

I can't answer for anyone else, but here are some of the reasons I prefer LymeNet Europe over most other forums:

- One of my exposures to tick-borne illnesses was in southern Finland, so I was hoping to find more information related to European strains here. (My latest exposure was in Vermont, where I mistook an attached/engorged nymphal tick for a growing blood blister, and then ignored a classic bull's eye rash. Too bad I knew almost nothing about Lyme disease back then). Although I live in Canada, I was not infected here.

- I still have extended family members living in Finland, so I like to keep up on the latest news/statistics from Europe. It gives me a chance to give those folks a head's-up when I think there is something relevant to them (like a newly-discovered endemic area).

- The postings here reflect an international viewpoint, and I think tick-borne illnesses are a growing global concern. The sharing of information and the various points of view presented are a refreshing change from some of the forums I've briefly looked at.

- Few people now post on The Canadian Lyme Disease Foundation's forum, and I rarely get feedback there. In the spirit of international cooperation, I do post information from Canada and the U.S. (as well as Europe) here at LyneNet Europe and CanLyme.

- Despite the disagreements that exist at times, I think people post here mostly in the spirit of sharing knowledge and wanting to understand why others may not always agree with them.

All in all, I find LymeNet Europe a wonderful source of information and (sometimes) lively discussion.

Rita A

p.s. And the "off-topic" posts are often fabulous.

p.p.s. I guess it's too late to change LymeNet Europe to "LymeNet International".

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Spanky
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Re: Why the heck are so few European people on this board?

Post by Spanky » Thu 31 May 2012 20:40

"Martian":
Camp Other wrote:This is somewhat off topic, but I wanted to ask: Why aren't there more European Lyme disease patients and researchers on this forum to begin with? It seems that most people who are posting are from North America. And perhaps that's another question I wanted to ask: How is it so many North Americans are posting here when it's supposed to be a European site?
Well, is it, though?

Is it supposed to be a European site? What difference does it make where the Admin is based?

I assume that there are so many N. Americans are here because posters here are allowed to speak freely, unlike so many of the other patient forums based in the US, where unless you speak and think as you are told...your remarks and posting privileges will be removed.

It's kind of like...the expatriate movement of the 1920s...we had to flee to Europe to find intellectual freedom.

Where the heck are all the European Lyme patients, researchers, physicians, etc. who are interested in uncensored information and discussion about Lyme disease? Or are many of them only lurking this board?
Perhaps because of the language barrier? Even though many in Europe have English as a second language, there are degrees of proficiency. I would never be able to carry on a decent discussion, say in French or German. Some might find that intimidating? (BTW, and in that regard, I think that you meant: "populated" with people from the US, not "propagated", below*). :)
And indeed, secondly, how come this board is propagated* with people from the United States?
Because the LymeNUTs in the US have politicized any attempts at rational discussion.

Martian
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Re: Why the heck are so few European people on this board?

Post by Martian » Thu 31 May 2012 20:54

Spanky wrote:It's kind of like...the expatriate movement of the 1920s...we had to flee to Europe to find intellectual freedom.
I learned something today.

The Expatriates of the 1920's: http://www.123helpme.com/view.asp?id=23319

rlstanley
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Re: Why the heck are so few European people on this board?

Post by rlstanley » Fri 1 Jun 2012 0:07

Spanky:
...I assume that there are so many N. Americans are here because posters here are allowed to speak freely, unlike so many of the other patient forums based in the US, where unless you speak and think as you are told...your remarks and posting privileges will be removed.
Or you are passive aggressively smarmed into the void and treated like some sorry child who needs to get with their program which, of course, is right and not evil and of the enemy. Oh yeah, and you don't get huckstered here either.

That's why I'm here.

Where else is there?
.

Camp Other
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Re: Why the heck are so few European people on this board?

Post by Camp Other » Fri 1 Jun 2012 0:15

rlstanley wrote:
Spanky:
...I assume that there are so many N. Americans are here because posters here are allowed to speak freely, unlike so many of the other patient forums based in the US, where unless you speak and think as you are told...your remarks and posting privileges will be removed.
Or you are passive aggressively smarmed into the void and treated like some sorry child who needs to get with their program which, of course, is right and not evil and not of the enemy.

That's why I'm here.

Where else is there?
I've been trying to figure out where the best places are online to go to discuss Lyme disease... I suspect some closed micro boards might be pretty good places but one needs membership to get on them.

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Spanky
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Re: Why the heck are so few European people on this board?

Post by Spanky » Fri 1 Jun 2012 1:16

"Martian":

"Spanky": It's kind of like...the expatriate movement of the 1920s...we had to flee to Europe to find intellectual freedom.
I learned something today.

The Expatriates of the 1920's: http://www.123helpme.com/view.asp?id=23319
Yes, and thanks for posting the link, Martian, I should have provided that myself. Just a reflection of my unthinking, 'US-centric, tunnel-vision bias', I suppose, that I didn't think to do that, by way of explanation of what I was referring to.

And while the Expatriate Movement produced some of the great volumes of American literature...the Expatriate Movement at LNE...

...well...has certainly produced volumes, anyway.

One of my favorite 'ex-pat' books, The Sun Also Rises, By Ernest Hemingway, written during this period, maybe has some relevant quotes for Lyme patients...again, one I like to remember:
The world breaks everyone and afterward many are strong in the broken places.
And for online Lyme forums? How about this one?
You're not a moron. You're only a case of arrested development."

- Chapter 6, The Sun Also Rises, Ernest Hemingway


http://en.wikipedia.org/wiki/The_Sun_Also_Rises

X-member
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Re: Why the heck are so few European people on this board?

Post by X-member » Mon 4 Jun 2012 16:36

The name of the topic:

"Why the heck are so few European people on this board?"

It might be because it can be hard to understand what some people from US talk about.

And also to understand what those people from US "forget" to mention.

In Europe we have actually stage 1, stage 2 and stage 3 borreliosis.

But some people from US only talk about stage 1, stage 2, and PTLDS ("chronic Lyme disease").

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Spanky
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Re: Why the heck are so few European people on this board?

Post by Spanky » Tue 5 Jun 2012 20:37

"Carina":
In Europe we have actually stage 1, stage 2 and stage 3 borreliosis.

But some people from US only talk about stage 1, stage 2, and PTLDS ("chronic Lyme disease").
Back when I was first diagnosed and treated, Carina...it was still traditional in the US to think of Lyme as divided into the three stages as you have described...including, "late", which I understood, primarily, to include the cardiac and neuro symptoms.

Since then, though, I think that there has been more of a growing recognition that what were previously thought of as being "late stage" symptoms, can actually occur at an earlier time...and what may be more relevant and realistic, than the 'stage' classification...should be the actual degree of involvement that the patient is exhibiting, for instance:
The panel has differentiated between early and late neurologic Lyme disease in these guidelines, as is customary. There is little evidence to support a pathophysiological basis for this distinction, however, and differences may be related more to the degree of involvement
http://cid.oxfordjournals.org/content/4 ... ull#sec-28

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Re: Why the heck are so few European people on this board?

Post by X-member » Tue 5 Jun 2012 21:08

I am not talking about you, Spanky.

But what you say is actually a problem, because when I talk about (or ask about) chronic Lyme borreliosis, I am "not allowed" to do this in this forum.

I have to call it late Lyme disease, instead.

The definition of late Lyme disease that is used in this forum everyone can find here:

"LNE definitions of late and chronic Lyme disease"

http://www.lymeneteurope.org/forum/view ... =11&t=3866

The European definitions can be found here:

EUCALB

http://www.eucalb.com/

Edit to add:

Most European cases with neuroborreliosis are only stage 2 (= rather easy to cure when it comes to treatment). So, the treatment studies on this must have been done on mainly early Lyme cases.

Stage 2 = early, disseminated

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