posted
I was just reading this thread a few minutes ago, but when I refreshed my page I got a message saying "Topic does not exist"...
This was a thought provoking thread originally posted by Rianna, which sparked a conversation in which many members added their opinions...Many good questions were asked and answered, good thoughts from both sides...
It was obvious from that conversation that the credibility of ILADS and therefore our disease as a whole is on the minds of many here.
Why was the thread deleted?
If it is still on here, please post the link for me, thank you!
Posts: 43 | From NY | Registered: Oct 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
JKM...
Seems like it is gone? But my bet is you can go to the LN Europe site to find it.
They seem to like bashing LymeNet members and/or our LLMD's and/or alternative stuff... so someone there is probably talking about it now... or at the very least probably copying it and adding their 2 cents to the mix... as usual.
posted
I personally thought the subject line was unwise and unhelpful for discussing any problems dealing with CAM and allopathic approaches to lyme. Looked too much like bashing, which is probably why it disappeared.
Posts: 8430 | From Not available | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yes, I thought the heading - and the repeat of it here - could have the reverse intention and put in people's minds that there is something wrong - when, in fact what is meant is that people should first become extremely well educated in ILADS research and consider the expertise of these fine doctors. Good research can then provide the background for further thought.
In fact, LLMDs and some of the other authors in this field have a great deal of credibility in my eyes - I respect their commitment. They have worked so hard to understand and teach - and we all know we are still searching for the best and safest ways to treat.
Still, by first learning the basics - the science - if desired, then we can move from there into adjunct areas which do hold much value.
If a question or label is attached to someone's name then, in many minds, it makes it fact and they are more likely to skip over the science. Like someone being picked up for DUI - but then it's found they were just dizzy - but the press label of DUI sticks in people's minds.
-
[ 26. November 2008, 01:13 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
An informative discussion is wiped from the topics but the juvenile crap continues on....and on.... with topics such as lymefriends vs lymelight
I am tired of that BS and am considering ditching this site all together...
-------------------- IGM Result Positive CDC/NYS Result Positive
posted
Believe me it's not as bad as the heavy-handed moderation over at the Lyme Healthboard area.
But yes it's unfortunate that the post got the axe.
Posts: 131 | From PA | Registered: Aug 2007
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Angelica
Unregistered
posted
It might have been Rianna who deleted it rather than the moderators.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I appreciate all the genuine people on this board who offer great advice and care AND there are many. However, this moderator stuff is crap in my opinion. I'm so tired of threads and people disappearing at the whim of a person(s).
i read the whole thread before it was deleted and saw nothing offensive. It was just differences of opinion. If everyone running this board doesn't like objective thoughts not of their own pattern, shut down the forum and create a blog and allow no posters to comment. That seems more appropriate.
It's like you want everyone to say LLMDs are holy and do no wrong and we all nod our heads in complete agreement. It doesn't matter if it's Mangosteen, Dr. J, credibility of LLMDs, or 50 other topics. One disagrees or says the wrong side of the story, WHAM..goner.
When is this stuff going to end? You do realize you've got NEW members joining every day who probably get turned off or shake their heads in confusion. I've been on here for months now and still do every time.
How about polling the board before removing a thread? Maybe we gleamed useful information and effort was made to discuss a topic. You have the right to wipe it out at yoru whim? It's not like slander was taking place!!
If it was deleted by a non-moderator, that's a different story. It certainly doesn't minimize the other issues, but this particular one would not fall under the list of examples.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Actually, I think LymeNet is an amazing place. Lots of discussion and, just as if having lunch with a bunch of friends, some of it piques our interest a bit more - but a forum is like a smorgasboard - you don't have to put everything on your plate.
For anyone looking for balance to discussion, be sure to see the Medical Abstracts right here at Lyme Net - I think this feature gets overlooked:
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I didn't say it wasn't amazing when it comes to knowledge, resources, people, etc. It really is. It's just the one aspect that I have a hard time swallowing now that I've seen it 10+ times. I think if that could be changed, it would be better yet.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I was wondering the same thing. Perhaps Rianna deleted the whole thread.
I thought the thread was great and full of many different opinions and was not mean or attacking in any way.
Rianna,
Did you delete the thread?
Elizabeth
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
one thing i've learned about lymenet over the years is that there is pretty much one voice on here
just the way it is...otherwise expect posts/threads to get deleted and such
the 'my son saw dr j' twice deleted thread made me lol and also made me remember the above fact
Posts: 1485 | From USA | Registered: Apr 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The great and powerful Oz has spoken. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bettyg
Unregistered
posted
it's gone??
i do hope rianna answers since she initiated thread. it had been respectful, and i had commented on that vs. fighting, name-calling that goes on.
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
quote:Originally posted by JillF: one thing i've learned about lymenet over the years is that there is pretty much one voice on here
just the way it is...otherwise expect posts/threads to get deleted and such
the 'my son saw dr j' twice deleted thread made me lol and also made me remember the above fact
I deleted the Dr J threads, both of them, as the original poster. It was not the management here. I chose to do it because I felt they were unfair and inappropriate. I know you don't all agree with me, but i think most do.
Just taking credit where credit is due, it wasn't the moderators. I started the threads and I chose to end them.
I also deleted the threads on LymeFriends, again as the original poster. I don't think anyone needed to be exposed to such filthy and vile language.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I agree with you! There was no fighting going on in that thread. I thought it was very healthy dialogue and ppl were impressed with how we could all share such different opinions in a mutually respectful manner.
Maybe Rianna will let us know.
Tracy, I never saw the Dr. J threads you are talking about, but am sorry if it got to a point where you felt like you needed to delete it. That is a real shame.
Elizabeth
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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bettyg
Unregistered
posted
tracy, have NO idea what you are talking about...
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I had posted two weeks ago after my son saw Dr. Jones. Subsequently, someone responded totally slamming Dr. Jones in every way. I deleted the thread and tried to start over, but the same thing happened again.
Rather than argue with the poster, I deleted the threads. Dr. Jones in no way deserved to have such awful accusations about him in print. That's my opinion, anyway.....they weren't up for long, but I wanted to be clear it was me, not the moderators who deleted the threads.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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quote:Originally posted by liesandmorelies: Maybe Rianna will let us know. [/QB]
Rianna didn't delete the thread herself as it seems. You can read about it over at Lymenet Europe.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Teacy,
You're not labeled as an administrator. How on earth are you deleting others' threads? Who else on here does not clearly have that title under their username that can do this?
Tracy, you didn't have that personal experience with Dr. J when you brought your child. Fortunately, yours was good. If you had a bad one, how's you feel if someone else wiped your comments? I'm not saying anything bad about Dr. J at all.
I am just making a point in regards to conduct here. If I had a sick child and saw 50 positive to 1 negative feedback, do you think that would stop me from seeing Dr. J? NO. Hopefully, there were not 25 other negatives SQUASHED I'm not aware of.
The only reason I'm so adament at arguing this is I strongly feel what is being done is wrong. I wonder if it'll ever stop.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The person who originates a thread can delete it. So can the moderator. Everyone else can delete their own responses to threads, if they wish.
I personally agreed with Tracy in her decision, as someone with an ax to grind took over the thread and turned in a different direction.
If people want to have calm discussions with different opinions expressed, they need to be careful of using provocative subject lines and other wording that looks like bashing.
Trolls read this board all the time and have used these statements against us, taken in context or out of context. This is not your living room with a nice private discussion. It is a public forum read all over the world by people who don't all have the same motives.
If you have things to say that could be used against the lyme community, say it in private messages or email.
Surely it is obvious that some discretion is needed. Didn't everyone here have trouble getting a doctor to treat them, insurance problems, etc? Why do you think this is? And don't you think that persecution of lyme docs means we need to be careful of what we say in public? Evidently some people have trouble understanding this.
Posts: 8430 | From Not available | Registered: Oct 2000
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Gabrielle:
quote:Originally posted by liesandmorelies: Maybe Rianna will let us know.
Rianna didn't delete the thread herself as it seems. You can read about it over at Lymenet Europe.
Gabrielle [/QB]
Yes, I see. It looks like you can read most of the thread there.
What I don't understand is how the Bionic 880 is irrelevant to the board as they are saying. I mean, someone may post about a drug I've never taken, that doesn't make the post irrelevant to the board even though it is irrelevant to me. It's not like the entire board is about the photon treatment, there are just a couple threads.
Also, it's strange because most of us who have had success with the photons are still seeing ILADS LLMD's. None of us are saying anything negative about the LLMD's at all.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
quote:Originally posted by Tracy9:
quote:Originally posted by JillF: one thing i've learned about lymenet over the years is that there is pretty much one voice on here
just the way it is...otherwise expect posts/threads to get deleted and such
the 'my son saw dr j' twice deleted thread made me lol and also made me remember the above fact
I deleted the Dr J threads, both of them, as the original poster. It was not the management here. I chose to do it because I felt they were unfair and inappropriate. I know you don't all agree with me, but i think most do.
Just taking credit where credit is due, it wasn't the moderators. I started the threads and I chose to end them.
I also deleted the threads on LymeFriends, again as the original poster. I don't think anyone needed to be exposed to such filthy and vile language.
i never said it was the mods. i was well aware it was you
sometimes it's the moderators, sometimes not. still comes down to one voice ~ otherwise expect your posts/complete threads to be deleted more often than not
not that i have a problem with it. just being honest about it
although this is moot, i personally did not see that there was any 'slamming' of dr j in any of the posts, or the thread itself. someone posted about, what she considered, a bad experience that she had had and her opinion/feelings about it. i feel she was as much entitled to talk about her experience as much as anyone who has had wonderful experiences. she didn't call him names or call him a duck and, to me, she did not come across as disrespectful towards him. it was her experience, not yours
maybe i understand because i myself have had bad experiences by two well known prominent LLMD's here in maryland and when i kinda voiced my opinion/experience about them (did not go into much detail - and i'm glad i didn't cause god knows what would have happened if i had) i ended up with a bad reaction and several not so nice pm's telling me all sorts of things. lol. but i also got pm's from a couple of different ppl who said they also had a bad experience with the same doctor(s) but never felt like they could say something on lymenet about it
i think ppl are entitled, and should be allowed, to talk about their experience, whether good or bad as long as it stays respectful ~ whether it's concerning a LLMD or mangosteen or the bionic 880 or w/e
just because someone doesn't agree with you, might post a different experience than you, might have had a negative experience does not in any way mean that they should not be allowed to voice their opinion or, if they do, that people are going to agree with said person or think negatively towards that LLMD/therapy/supplement, etc. just look at the first mangosteen thread - what started off as a somewhat negative thread about mangosteen actually ended up being quite informative and probably several ppl will now be trying mangosteen for the very first time...all due to that thread
[ 26. November 2008, 12:39 PM: Message edited by: JillF ]
Posts: 1485 | From USA | Registered: Apr 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I see.
When I suggested that the headline might not be saying what was intended, I assumed that it was hoped that anyone using alternative methods would first read all the basic research and be sure to consider the process involved in ILADS collective body of work.
I thought it was to caution folks not to jump to stuff without first really understanding the science and consulting with experts.
However, after reading the full previous thread, now posted at LymeNet Europe, I see that was wrong. I see now that the headline said what was intended - to criticize doctors who are looking for answers in new places.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I believe Rianna deleted it since she started it, and she may have restarted the conversation over on Lymenet Europe.
Posts: 3528 | From US | Registered: Apr 2007
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I'm assuming you're the boss around here in terms of technology. Do you think it may help to have technological solutions to many of these problems?
If you upgrade the forum software (Maybe Simple Machines? Maybe a newer UBB. I know there are a bunch of free/open source forums out there that are quite powerful) you will have more tools to moderate discussion.
For instance, how about implementing separate forums for discussion of different types of treatment. Verified, scientifically proved pharmaceutical anti-pathogen treatment (antibiotics, antifungals, cyst busters, antivirals) in one forum, "Verified complimentary therapies" in another forum such as herbal medicine, diet changes, supplementation, acupuncture etc... stuff that isn't directly drug related, but has been well accepted as viable and science based, and "experimental and energy therapies" in a third forum, containing items that are new and untested.
This way there will be less clashing between approaches and new patients will be able to find the information that interests them faster and with less debate.
Also, consider locking threads and moving them to another forum instead of deleting them. It gets flame wars under control without removing the information from the views of others and creating threads like this one. A simple "Moderator is seeing this get out of hand. Thread locked and moved to the Lyme Rage Den" would be enough.
Perhaps this would help to make information clearer to everyone and decrease the amount of friction that seems to arrive.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Looks like it was Martin (the moderator/owner of LymeNet Euro) who posted the link to the thread over there, not Rianna.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
quote:Originally posted by seekhelp: Teacy,
You're not labeled as an administrator. How on earth are you deleting others' threads? Who else on here does not clearly have that title under their username that can do this?
Tracy, you didn't have that personal experience with Dr. J when you brought your child. Fortunately, yours was good. If you had a bad one, how's you feel if someone else wiped your comments? I'm not saying anything bad about Dr. J at all.
I am just making a point in regards to conduct here. If I had a sick child and saw 50 positive to 1 negative feedback, do you think that would stop me from seeing Dr. J? NO. Hopefully, there were not 25 other negatives SQUASHED I'm not aware of.
The only reason I'm so adament at arguing this is I strongly feel what is being done is wrong. I wonder if it'll ever stop.
I am not an administrator, not even close. I dont' even know the administrators.
I deleted MY OWN threads, as anyone can do. I think Lou said it far better than I ever could. I dont' object to people's personal experiences being shared, good or bad, but I think the poster on those threads crossed the line.
Resurrecting a seven year old negatively perceived experience which resulted in publicly trashing and bashing an 80 year old physician who is already going through extreme legal challenges is just not helpful to anyone.
There was nothing positive to be gained by allowing those posts to remain in the public view. However, much hurt could be caused, if nothing else, to those of us who admire and respect Dr. Jones.
I am finding there is more peace and serenity at times in just letting something go rather than arguing your point to the end. I can go at it with the best of them, but I am trying to step back and see the bigger picture as much as I can here.
Sometimes, I think things are better left unsaid. That is why I deleted my threads about my son's visit with Dr. Jones and have not reposted about our experience.
Maybe at some point I will...but I won't stand for anyone trashing Dr. Jones on any thread I started about my little boy and how I found a man who helped him.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Tracy,
I see your point with the Dr. J thread - and I would have done the same thing. Libel and slander should never be allowed to stand without corrective action.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Tracy,
I was more referring to the recent thread, not the Dr. J one. The one I thought Rianna started? Did you start that one? if so, I apologize.
I didn't see one offensive thing in the thread Rianna started. The person just expressed their concerns ideas such as many others do on the opposite front.
Why was that one deleted is my issue.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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For instance, how about implementing separate forums for discussion of different types of treatment. Verified, scientifically proved pharmaceutical anti-pathogen treatment (antibiotics, antifungals, cyst busters, antivirals) in one forum, "Verified complimentary therapies" in another forum such as herbal medicine, diet changes, supplementation, acupuncture etc... stuff that isn't directly drug related, but has been well accepted as viable and science based, and "experimental and energy therapies" in a third forum, containing items that are new and untested.
I think that is a great idea, Blackstone. Can this be done?
Posts: 371 | From CT | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
It's been talked about before and I think it would be nearly impossible to draw a line around what is alternative.
Garlic, allicin and many herbs, to me - are medicine. PubMed has hundreds of abstracts on these and other herbs.
To me, if something works, I don't put it in a category of pharmaceutical or "other" - "other" - it either works or it doesn't. I want all good options here. There is room.
I think, too, that they checked and found they could not divide the bulletin board into any more forums than currently exist. Something would have to go.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Blackstone...
Might hyou be confusing lou- a long time member and very active advocate for us- with LouB the moderator?
Just asking...
??
BTW-
I agree with lou and think the situation was summed up well in that post.. lou said..
"The person who originates a thread can delete it. So can the moderator. Everyone else can delete their own responses to threads, if they wish.
I personally agreed with Tracy in her decision, as someone with an ax to grind took over the thread and turned in a different direction.
If people want to have calm discussions with different opinions expressed, they need to be careful of using provocative subject lines and other wording that looks like bashing.
Trolls read this board all the time and have used these statements against us, taken in context or out of context. This is not your living room with a nice private discussion. It is a public forum read all over the world by people who don't all have the same motives.
If you have things to say that could be used against the lyme community, say it in private messages or email.
Surely it is obvious that some discretion is needed. Didn't everyone here have trouble getting a doctor to treat them, insurance problems, etc? Why do you think this is? And don't you think that persecution of lyme docs means we need to be careful of what we say in public? Evidently some people have trouble understanding this."
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