topics removed?

[momofgirls]

I've noticed too that topics are being removed. Does anyone have any insight?

[thereishope]

Maybe it's a glitch in the system?

 

Oh, in case anyone wants to know, I will also be posting as "Vickie" on http://pandas.yuku.com/

[MomWithOCDSon]

I think maybe the moderator removed some topics, unfortunately.

[LNN]

I think maybe the moderator removed some topics, unfortunately.

 

I can understand that any forum needs to moderate and remove inappropriate posts. However, there is a "1984" feeling to this morning's activity. If you hadn't logged on this morning, there are several topics that now "never existed". It is one thing to protect a site's rules. It's another thing entirely to remove topics that simply show disagreement with a position. I am at a loss to understand this morning's deletions.

 

Chemar, could you please post the "rules" of the forum to help us understand why some of this morning's posts have been removed by someone other than the author?

 

Thank you,

Laura

[MomWithOCDSon]

Folks, I stand corrected. The moderator (Chemar) did not remove any topics. Apparently that action would have fallen to the webmaster or administrator because the posts were against forum rules.

 

Good call, LLM, to ask for a post or link of those rules again. Like many of us, I have my suspicions as to why those topics were deleted, and I have an opinion as to the necessity of that. But let's see what the rules say.

[coco]

Yes, I thought I saw a post last night about Dr. T leaving the forum, but now it's gone.

[Chemar]

I have asked our administrator to post here as it really isnt my place to do so.

 

as I am sure you are all aware, I have only ever tried to be helpful here, and in fact when the PANDAS topics on the TS forum where becoming many, I requested a separate forum just for PANDAS

 

please understand that people sometimes delete their own topics too, and sometimes issues related to the forum rules (which are pretty simple...be nice, dont fight, dont solicit, dont spam ) All forums have basic rules!

sometimes the issues are related to the way that ACN is set up etc

these are things I will leave to the admin to explain here

 

From my personal point of view, myself and the admin and webmaster have only ever tried to be as accommodating as possible to everyone here, so I am truly puzzled and regret that our motives are being questioned this way.

[MomWithOCDSon]

I have asked our administrator to post here as it really isnt my place to do so.

 

as I am sure you are all aware, I have only ever tried to be helpful here, and in fact when the PANDAS topics on the TS forum where becoming many, I requested a separate forum just for PANDAS

 

please understand that people sometimes delete their own topics too, and sometimes issues related to the forum rules (which are pretty simple...be nice, dont fight, dont solicit, dont spam ) All forums have basic rules!

sometimes the issues are related to the way that ACN is set up etc

these are things I will leave to the admin to explain here

 

From my personal point of view, myself and the admin and webmaster have only ever tried to be as accommodating as possible to everyone here, so I am truly puzzled and regret that our motives are being questioned this way.

Maybe we're all a little touchy. Generally speaking, this forum has been a "safe haven" where we could go and trade experiences, ask for support, etc. whereas, out in "the world," we're frequently met with, "No, your child is just OCD/TS." Or "PANDAS isn't proven." Or "PANDAS is controversial, you know."

 

This is a place where we could query, share, plead, exhort, etc. in safety. There are some here with medical and/or scientific backgrounds who post more technical and/or scholarly items and responses, and there are some here like me who are strictly parents seeking help and support. But I think we all see the value in each and every one of the forum's participants so it feels a little dicey when posts are removed. I won't speak for anyone else, but I've never seen the forum rules, nor have I at any time been concerned that either I or anyone else was in violation of them. I just know there are some posts I instantly warm to, and others that I don't.

 

For myself, I keep circling around to the whole "personal responsibility" issue. There are a lot of opinions here . . . some very strong, some less so . . . and lots of advice of all ilks. I can choose to follow any and/or all of it willy-nilly, I can use it as a jumping off place for more indepth research of my own, or I can ignore it altogether in favor of my own convictions or advice I find more valid from my own medical professionals or other sources. But that's my call and my responsibility, and I don't have any problem whatsoever with others posting in opposition to my own stance. Nor do I mind doctors or professionals posting offers of assistance. Thinly veiled solicitation? Maybe. But the offer of assistance in this instance was pro bono, and none of us here was born yesterday. We're not naive enough to believe that any professional can provide unlimited assistance at no cost, so I doubt any of us would've taken any offer up without that understanding in mind.

 

If posts were removed because they were strictly against the rules, or because the poster him/herself thought better of it after the fact, then I suppose we need to 1) get clearer on the rules ourselves, and 2) move on from indulging in paranoia. Like I said, I, for one, am a little touchy because the outside world is generally not especially accepting of what my family is going through. So even the inference of "judgment" here as to what is acceptable or unacceptable for the members of the forum to read, is a tough pill to swallow. But we've swallowed bigger and tougher, so here goes . . . . .

[Sheila]

Dear Folks, I can feel your passion, but please -- 1984?

 

How can some of you be so adamant about posts being removed when you don't know why they were removed?

 

I don't know how ACN has come to be treated with such suspicion when we have hosted our Forums for a very long time without any interference of the nature you are accusing us of.

 

Please try to see what you have written with the following understanding:

 

Three posts were removed. . .

 

One was removed by ACN. This was from Dr Trifiletti and it was posted on 3 of our forums last night, introducing himself and giving a text that he will now admit (we have been in touch) was outside our guidelines. We are a nonprofit organization and are not allowed to permit anything that can be perceived as self-promotion. This goes for authors, people selling nutrients or products, healthcare professionals--whoever. Something may slip by us or be OK on a one time basis, but we have to be very careful about this. We have been fine with Dr T posting and he knows this; he has added a great deal to the forum conversation and I know he has been a great help to some of you. He also knows he is welcome to continue posting. We do not endorse any one person, and are not allowed to under federal nonprofit rules. We have never questioned the content of his previous Forum responses nor edited them.

 

Two This must have been removed by Dr T himself. He had written a "good-bye" post, as an initial response to #1 above. We did not remove post #2.

 

Three This was removed by our webmaster because it suggested that people move to a new forum by Dr T, and it implied (whether intentional or not) this was needed because we were censoring material. I support that removal because the post was a misinterpretation of what has taken place.

 

I hope those of you who have posted on this thread would please re-read your notes, and try to understand what I say when I mention the tone of this forum. Touchy is one thing, inflammatory is something else! It is disheartening to be treated in this manner.

 

Dr T and I continue to be in touch and will let you know the different resources available to all of you.

 

In the meantime -- welcome back to 2010! Sheila

[LNN]

Shelia,

Thank you for your explanation. My reference to 1984 was in response to one post I don't see mentioned. Someone posted the topic asking what had happened to some posts. Then Chemar responded by inviting that person to PM her to discuss any specific questions. Five minutes later, that post was gone. So that, in conjunction with the topics you cite, all happened in a very short span of time and created a very strange series of events.

 

I am not a frequent poster and generally do not post about controversial topics. I can certainly understand ACN removing solicitations or being sensitive to posts that suggest a conflict of interest. However, I can also see how someone was trying to be supportive to a community that often has little support outside this forum.

 

I am in no way suggesting that you and the group who make this forum possible are not being fully supportive. In the end, this thread will likely be re-read in a week as much ado about nothing - a misunderstanding. I think this stems exactly from your question "How can some of you be so adamant about posts being removed when you don't know why they were removed?"

 

It was the lack of explanation and the rapid series of deletions of multiple topics and posts that was bothersome.

 

If my words were poorly chosen or caused harm, I sincerely apologize.

 

Laura

[Chemar]

Shelia,

Thank you for your explanation. My reference to 1984 was in response to one post I don't see mentioned. Someone posted the topic asking what had happened to some posts. Then Chemar responded by inviting that person to PM her to discuss any specific questions. Five minutes later, that post was gone. So that, in conjunction with the topics you cite, all happened in a very short span of time and created a very strange series of events.

 

Hi LLM

I deleted my own post earlier today as i felt it better to let Sheila respond as she had all the full information. I deleted it shortly after making it, for that very reason. I felt I was overstepping by responding and replied to the member in PM instead

 

I posted again later when the continued posts to this thread called into question my motives as I felt it necessary to clarify

 

thanks for updating Sheila, and I do hope this can all settle now so that the focus can return to helping the precious kids represented here

[lss]

"We are a nonprofit organization and are not allowed to permit anything that can be perceived as self-promotion. This goes for authors, people selling nutrients or products, healthcare professionals--whoever."

 

In another post you ask that parents post their Pandas stories and that they would be published in an ACN Publication. I'm curious, where would the profits from the subscription go to?

 

Linda

[Sheila]

Hi Linda--

 

Funds from anything published by ACN go directly to ACN, to support our operating costs and efforts. The PANDAS stories would be used for an ACN publication. When we can move beyond our basic expenses, then we aim to pay a staff. Currently we rely primarily on volunteers, but we would like to have a staff as most other oranizations do, as we could be much more effective. (My book on Tourettes is by ACN.)

 

I hope that answers your question?

 

Sheila

 

 

 

"We are a nonprofit organization and are not allowed to permit anything that can be perceived as self-promotion. This goes for authors, people selling nutrients or products, healthcare professionals--whoever."

 

In another post you ask that parents post their Pandas stories and that they would be published in an ACN Publication. I'm curious, where would the profits from the subscription go to?

 

Linda

[faith]

friends,.....

I don't really know exactly the posts that are being talked about here, altho I did see the one by Dr. T. last evening, and at the time it did kind of confuse me. Now that I've read the above, I think I understand better... However, for those that were feeling it was a strange move by the moderators here, I'd like to just point out that I've been on these forums for some years now, and I can absolutely attest to many other posts having been removed due to the soliciting nature of them (or spam, and we've even had some x-rated ), so this isn't the first. We've had posts from some folks offering their services here, and those type posts have always been frowned upon and have been questioned and/or deleted. So while some here may feel that Dr. T. was unfairly deleted, you have to bear in mind that the moderators do not know him personally as some here do, and so their actions are just in keeping with the rules of the forum and are really just for the best interest of the members. Think about it, anyone can pose as a doctor here, and no one would be the wiser. We know who he is, but they do not. So I think we have to be grateful that there is some protection from caring people like Sheila Rogers and Chemar. As I mention, I've been here for some years now and they have been absolutely wonderful. They don't run this forum for profit, and Chemar volunteers her time to look after the forum as well as give valuable input for those seeking help for their children. She is the parent of a child who had similar problems as our kids, and for those who are not familiar with her story, I don't think she would mind if I pointed out that her son, altho an adult now who is doing very well, had very severe TS as a child, and so she is very familiar with the pains and obstacles we face with our own children..... Look at the information that is here at your fingertips on this forum. Its not just about PANDAS, but there are other topics here as well. This is a give and take, I have learned so much by communicating with the members of this forum, as well as being priveleged to come to know a few on a more personal level, and so I hope that the friends here won't abandon it just because of a few posts that came under the gun. We know he means well, and I don't feel that it was anything personal, but I guess sticking to the rules has to go for everyone, not just a few. I don't believe this was in any way a slam against PANDAS or the info we wish to obtain.

 

I believe Chemar has stated that Dr. T.'s input here is still welcome, but he is a member of the forum just as are the rest of us, and if he made a mistake in a posting, I hope that it will just be taken in stride, just the same as if one of us had (and we probably all have at one point or another)....(well, some of us.. ) ... Listen, I for one have no problem with difference of opinion, if that's what gets people talking and thinking, then I'm all for it.

 

To this end, I hope we can put aside our 'passion' for PANDAS per se, to the point where it causes a halt in communication, and continue 'talking' and exchanging help, ideas, support, etc. I value this forum and value each and everyone here as a contributor. As was stated, no one here has all the answers (not even the PANDAS doctors) so that's where we all need each other.. some of us have a couple of answers, some of us have the other couple, and some of us are still searching.. ..........so please don't abandon each other.

 

thanks for listening.

 

Sincerely,

Faith