Martijn (known as Martian in the discussion forum) has been a Lyme disease sufferer since the late 1980’s following a tick bite he experienced as a child during a camping trip in the Netherlands. Since tick-borne illnesses were barely recognized in Europe at that time, the young man spent years suffering from complex disabling symptoms; the resulting social isolation and lack of compassion took their toll.
He explains about his attempts at formal higher education, “I first tried biotechnology, but in the first year I stopped halfway. I could not keep up with it because of my bad health.
Later I was going to study biology at a university. That was in 1998, but
during the preceding summer I got much worse. On top of all the symptoms I already had, I got very dizzy/lightheaded/imbalanced, got problem walking, and got terrible heart arrhythmias. I could not study at all this way.”
It took him many years to locate a physician who would diagnose him with the tick-borne illness. Martijn is concerned about the lack of physician education and general awareness in his country even though he indicates that a recent study found 23.6% of ticks evaluated were infected. Other reports show variable levels of infectivity depending on location, but increasing tick densities over time indicate that the problem is only getting worse.
Martijn found that intelligent discussion without censorship was an important part of his self education and in finding competent help for his illness. For years he posted on the Usenet group sci.med.diseases.lyme and learned much from the unfettered discourse there even though the atmosphere grew very harsh as time passed. Unfortunately in recent years, that group has become almost useless due to a few individuals who destroyed the open discourse either by design or mental instability.
So—self-taught in the computer skills needed—he started LymeNet Europe and LymeNet Nederland, sites where others with a similar outlook could gather or just lurk. He moderates the forums with a gentle but firm hand, and he lets posters know that he expects civil discourse no matter what the subject. He wants people to attack the problem and not each other; to agree to disagree.
A small band of regular posters at LymeNet Europe so far seem delighted with Martijn’s vision and give their opinions readily when asked about the site and Martijn (go here to see all of their responses):
Frequent contributor Itsy notes, “I'm interested in information, science, and healthy debate. Here, we can discuss studies. We can discuss the pros and cons of unproven or alternative treatments. We can bust one another's chops...”
Claudia states that the type of people who would find the site useful are those “looking for objective and factual information. And those looking to understand and sort through the political and medical mess that is Lyme disease.”
Who won’t feel comfortable? “Sheep bleating dogma or hype without having examined or thought through the facts, and those who take being challenged or questioned on their thoughts or positions as a personal insult or offence.”
“The atmosphere here is generally calm, although there are clashes sometimes among certain differences in opinions,” writes LymeEnigma. She appreciates Martian’s moderating skills that keep the board functioning well. “Martian is a great administrator. He makes moderating look easy.”
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Polls: a new feature
The discussion Forum at LymeNet Europe is divided into 8 general categories and subcategories. The topics range from science to support, but a new feature “Polls” (subcategory of “Support & Stuff”) gives the reader a taste of just what kind of subject matter this group is willing to tackle.
Here members can submit surveys to find out what other contributors think, and the results are sure to stimulate further discussion, something this group thrives on.
For example, I recently had the idea of writing an article about the most dubious or questionable Lyme treatments. Since the group has been actively discussing many contenders, I thought they could put together a list and then vote on it to see which would come out on top. The discussion was lively about what should be put on the list, of course. Twenty treatments were decided upon and the survey results are posted under “Most dubious/questionable Lyme disease treatments”
At the time of this writing, the top contenders are “salt/Vitamin C” and “treatment advice by uncredentialed gurus or self-proclaimed experts”. When asked to clarify the latter, Claudia patiently broke the subject down into 5 categories, gave examples and cites references with URLs. She wasn’t shy about giving specifics by any means.
Another survey asks, “In your opinion, what is the biggest obstacle to the resolution of the Lyme controversy?” So far, the IDSA treatment guidelines, the ILADS treatment guidelines, lack of medical research and lack of viable controlled studies in humans are in a 4-way tie.
The polls are still open, so if you feel you’d like to participate in a survey—or add one—and join in on the lively debates, discussions and occasional donnybrooks, sign up to be a member.
“The only people who might want to stay away from LNE would be those looking to promote dogma, pseudoscience or other such nonsense,” says LymeEnigma.
Itsy cautions, “It should be avoided by minors without supervision for profanity and adult themes…an ‘R’ rated board at times.”
But in true LymeNet Europe fashion, Yvonne disagrees and doesn’t want anyone to stay away, “Everyone should have the opportunity to say something.”
And Hiker53 has a call out for more people to join from Europe. She’d like to find out about different treatment options available on the Continent.
Finally, while I haven’t used any of Cave76’s quotes, you’ll find her making insightful and often humorous comments throughout all topics.
You’re invited to visit, join or just lurk:
LymeNet Europe (English language): http://www.lymeneteurope.org/
LymeNet Nederland (Dutch language): http://www.lymenet.nl
Rita L. Stanley, Ph.D. writes articles of medical interest and is coauthor of “Confronting Lyme Disease: What Patient Stories Teach Us”.
She can be reached at ***@****