Thank you for assisting new members at LymeNet. You provide a valuable service for those in search of help. The new moderators would like to make your job easier and also streamline our work in the process if possible. Please take a moment to respond to a concern raised by a member.
Is it a problem responding to those who accidently post on previously established threads? (Example: A first time poster from Nevada spots a thread here asking for Nevada doctors and makes their request known at that post.) When this occurs, is it necessary for moderators to close the thread after you have responded to the poster?
We would appreciate your feedback.
Anna Lee
Posts: 127 | From USA | Registered: Oct 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I'm very glad you brought this topic up. There has been an increasing problem with posters tagging onto other posts from the same state and often their posts are missed and not answered or remain unanswered for an unacceptable period of time.
Although there is a sticky on the top of "seeking" and I do know that it was agreed that all the stickies would be reorganized to be more effective, it would be great if we can get something done about this particular problem now. I also know there will always be those who will be confused and post onto an existing post for the state they are looking in but it would be much better if we had a more effective sticky, it being the very FIRST one, about how to properly place a post.
Regarding your specific question, it is not a problem per say to answer a post that has been added to an already existing one. The problem is when someone does that there are times when their post is missed/unanswered or sometimes answered by a member who is not one of the group that routinely volunteers in this section and holds all the state lists, which are more comprehensive in scope. I do not mean to imply that I don't appreciate the help of other members, as I do, but when I reply to a poster in "seeking" I send much more than a few LLMD names, but also all of the information they need to get started on their journey toward tackling this illness, including a very comprehensive LLMD list with lots of patient feedback. Therefore, I do not want to be in a position where I may be missing posts, as hard as I try not to do so.
So, this becomes an issue of our not being able to ensure that everyone who posts and is asking for help receives the help they require and in a timely manner. In general, once I have answered a post I don't go back to it. Sometimes, if I see that it suddenly has more than three or four replies I'll go back to it and see that someone has added a new request but many times because of the volume of posts on a particular day those tag along posts are missed. Basically, I don't always see the new request and in general in "seeking" each post has an average of three replies, if that, and then it has been deemed to be properly handled. Only if the post has a larger number of replies than usual will it stand out and catch my eye.
We handle a lot of requests in this section and there are days when it gets very busy and it's easy to overlook a post that is added on to an already existing post. Fortunately, we have several core people helping in this section on a daily basis, so it's not as thou only one person is keeping track of things, which in that case, it would be easier to catch these tag along posts. This may sound contradictory but I think you understand what I mean in that if one person were handling this section all tag along posts would be caught but the work load is too much for one person to handle, hence the issue at hand is a built in problem that needs attention.
Essentially there are two issues here. How can we best ensure that each poster places their own post, so that we can be sure to answer it in a timely manner and not go unnoticed and also the question you actually asked, namely; "is it necessary for moderators to close the thread after you have responded to the poster?".
We need your help here, as mentioned above, to help with a better sticky on the top with it being the first one as opposed to the current sticky:
The one we currently have is a mess, terribly organized and is not helping any one at this point. I doubt that any new poster is going to take the time to sift thru this post to get to the last post, which is the only one that addresses the issue. The new sticky should succinctly explain that each poster should post their own post and how and why and also not to PM volunteers who work in "seeking" directly, which is another problem in that they lose out on the benefit of input from more than one person. That sticky should be the "end of story" with no additional replies allowed. I don't have a problem with established members PMing me directly but am referring to posters who have just registered as they benefit from placing a post in "seeking".
I don't feel it is necessary for a moderator to close a post. When I find a situation such as this, I answer the tag along post, place a post noting that the post has been handled and then I place this post:
"We ask that you please post all ``NEW'' requests for a doctor on a ``NEW AND SEPARATE POST'' by clicking on the icon that says "Post New Topic" on the top of this web page.
Our volunteers, who help with LLMD referrals, look for "NEW" requests and don't go back to look at older Topics that have already been answered.
We would not want your request to go unnoticed and unanswered.
Thank you much "
Personally, this works for me and I don't have to bother a moderator or wait for one to get around to closing a post and risk that until one does that additional posts may yet be added on to the original post.
I think the only time I need to ask a moderator to close a post is when a post is getting out of hand, which has not yet been a big problem for me.
In summary, you can help us best by having a well organized sticky explaining that each poster should place a new and separate post, as I described above, and situate it as the first sticky. In that way, I think the issue will take care of itself and we can handle the few that will inevitably slip thru the cracks, as I have already described.
If we make the changes I have suggested and still continue to have a problem, we can readdress it then.
Editing to show an example. This link below is a perfect example of what happens. Today has been slow, as opposed to yesterday's twenty something plus requests, so it was easy for me to notice these two new tag along posts.
However, if someone comes along and adds another response for the new posters they should again made a note that they are answering the two new requests but that the post is basically closed to new requests, as it will inevitably receive more responses.
posted
I wanted to let those of you helping those searching for LLMD's know that I made a sticky for the top of this page that addresses concerns that have been made to the moderators. If I missed something, please let me know.
This is not necessarily meant to be permanent. When whoever organizes the stickies does so, it can be changed or even deleted.
If you have problems with a new member posting multiple times or posting in a block, or adding onto another thread, just send them a link to those instructions.
Thank you all for all the work you put in to make this forum helpful to those who visit.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I have not found it to be a huge problem but it's essential that if you or I add a response after posting what I mentioned above that it is then mentioned again, that the post is closed to new requests.
You know it is human nature that many people only look at the last post placed and don't read anything else.
How do we determine when we close off a post and who determines it, especially since you and I have no communication because you very unprofessionally axed me off the volunteer list and ranted and raved to everyone on the list as to why?
And what about other members who live in the state who often post based on their personal experience with these doctors.
That would be closing them out and also giving the poster fewer responses. I personally learn from many who don't help in seeking when they venture in, as I can PM them and ask them who they are referring and get perhaps the name of a new LLMD or at least some more feedback.
I still feel it may be best to first have a properly set up section with the sticky I mentioned pinned right on the top and see if that helps. Right now, for many newcomers, there is no guidance available to them at all.
The stickies are a mess, don't meet their needs and who is going to read thru all that junk? Very few, so they just add on to the state they are looking for.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Betty, I guess you deleted your post as I no longer see it. My response remains.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I have edited the guidelines below based on my suggestions in my post below in response to Betty's suggestions. If you wish to continue to use what I have written, the guidelines below have been edited and can be copied and pasted as written.
Also, whatever revisions are made, when you make them can you delete the current guidelines post and start a new one so there is not a notation on the bottom showing that it has been edited. I think that would look best when we get it in final form.
edited 11/19/09 at 9:25 pm **************************************
Based on my experience helping on this board and the questions I receive from new posters, I would like to suggest that the new sticky be revised as follows:
Topic: Posting Guidelines for New Members. Please read before placing your post.
Welcome to Lymenet! We are so glad that you have found us but are very sorry about the circumstances that have brought you here.
Listed below are some simple guidelines to help you place your "New" post and help our volunteers help you better.
1. Please place a ``new'' and ``separate'' post of your own rather than adding on to an existing post for the state you are seeking help in by clicking on the ``Post New Topic'' icon located on the upper right hand side above the word ``Directory''.
Also, please only place one post in the ``seeking a doctor'' section, as opposed to duplicate posts in this section or other sections, as it makes it difficult for our volunteers to help you in your search for a Lyme Literate Medical Doctor (LLMD) and also keep track of duplicate posts.
2. When placing your post, we ask that you do not mention doctor's names if you have one in mind but only the first initial of the doctor's last name and state, i.e. Dr. G in NY.
3. We only require the state or states you are searching in, as our lists are set up by states and not cities.
4. It is not necessary to include your email address in your post. Our site has a private message feature that allows us to communicate though the web site without ever having to reveal your email address to the public or any members.
5. It would be very helpful if you would provide us with a brief description of your situation and whether your request is for a person under the age of 18, as we use different lists for adults as opposed to children and young adults.
6. Many of our members who help others on this board are very sick with Lyme Disease themselves and suffer from central nervous system and visual problems resulting in difficulty reading. We ask that you please break up your paragraphs, as has been done here.
Many of us simply cannot read long paragraphs and large blocks of information. Your help and cooperation will assure that we can help you better.
We look forward to getting to know you better and thank you in advance for taking the time to read our posting guidelines.
Welcome Aboard!
If I have left anything out that should be included, please feel free to offer your suggestions.
[ 11-19-2009, 09:26 PM: Message edited by: Abxnomore ]
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Thank you. I knew it would be better if one of you wrote it, but I wanted to get something up there quickly. Yours has replaced what I wrote.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Great. Can you add the hi icon, please?
He's very welcoming!! Thanks. Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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bettyg
Unregistered
posted
i've not seen whoever's new post above just reading abx's here...
no roz, i did NOT delete my previous post; apparently 1 of moderators did.
i'm going to show my revisions to what i read of abx's below; hers is intact above. betty
quote:Originally posted by Abxnomore:
Topic: Posting Guidelines for New Members. Please read before placing your post.
Welcome to Lymenet! We are so glad that you have found us but are very sorry about the circumstances that have brought you here.
Listed below are some simple guidelines to help you place your "New" post and help our volunteers help you better.
** 1. Please place a ``new'' and ``separate'' post of your own rather than adding on to an existing post for the state you are seeking help in by clicking on the ``Post New Topic'' icon shown in small black and white box located on the upper right hand side above the word ``Directory''.
Also, please only place one post in the ``seeking a doctor'' section, as opposed to duplicate posts in this section or other sections, as it makes it difficult for our volunteers to help you in your search for a Lyme Literate Medical Doctor (LLMD) and also keep track of duplicate posts.
** 2. When placing your post, we ask that you not mention doctor's names if you have one in mind but only the first initial of drs. last name and state, i.e. Dr. G in NY.
** 3. We only require the state or states you are searching in, as our lists are set up by states and city names; not by county names.
** 4. If your request is for a person under the age of 21, we use different lists for adults as opposed to children and young adults.
5. Many of our members who help others on this board are very sick with Lyme Disease themselves and suffer from central nervous system and visual problems resulting in difficulty reading.
*** We ask that you please break up your paragraphs as has been done here and double space between each paragraph.
Many of us simply cannot read long paragraphs and large blocks of information. Your help and cooperation will assure that we can help you better.
We look forward to getting to know you better and thank you in advance for taking the time to read our posting guidelines.
Welcome Aboard!
If I have left anything out that should be included, please feel free to offer your suggestions.
betty's changes are in the lines starting with ** ***********************************************
moderators, please leave my comments here for the rest of those who have been sending out llmd names for years.
i sent them a group email giving them the link for THEIR input of how they feel about this and for their suggestions.
right now, you have roz's comments and mine from last night, but mine from this afternoon which were not rude or discussing anyone stated that even after we ask folks to stop posting and it's closed. they post anyway. *************************************
moderators,
i have a question for whoever reads this 1st; what is the procedure to close a post.
do you just go to the bottom of the post and click the CLOSE POST BUTTON? is there more to do than this simple thing?
i have no knowledge and asking since there were no moderator rules showing what you can do or not do on the board for all the membership as i requested when it was announced in the future we would have more, active moderators. thanks :)_
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You were specifically told to not respond to this topic since you had already given us your opinions and we wanted feedback from other members. You responded anyway and I deleted your post.
Anna Lee
Posts: 127 | From USA | Registered: Oct 2009
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posted
moderators, i have a question for whoever reads this 1st; what is the procedure to close a post. do you just go to the bottom of the post and click the CLOSE POST BUTTON? is there more to do than this simple thing?
i have no knowledge and asking since there were no moderator rules showing what you can do or not do on the board for all the membership as i requested when it was announced in the future we would have more, active moderators. thanks
BettyG.
As you were previously told several times by Jenifer, moderators are in charge of the boards. As a member of LymeNet, that is all you need to know.
Anna Lee
Posts: 127 | From USA | Registered: Oct 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Regarding Betty's revisions, I feel that if they are adopted, that proper English should be used, as opposed to abbreviations.
In fact, when we are communicating on the board, especially when replying to "seeking" requests every effort should be made to communicate clearly by writing in complete sentences and refraining from using abbreviations, unless they are generally recognized Internet terms.
A big part of our previous discussions about the stickies were about making this board look professional.
The only revisions that I feel should be adopted are in #2 mentioning the use of the doctor's last name and changing the age in #4 from 18 to 21.*
Also, upon re-reading point number 4, I would suggest changing could to would. I will make the corrections on my original post for clarity, as well.
*I would also like to know what organization recommends that patients up until the age of 21 should see the pediatric LLMDs or LLMDs that treat children. Just curious as to where these recommendations come from.
BUT, it should read like this with the corrections made in bold:
2. When placing your post, we ask that you do not mention doctor's names if you have one in mind, but only the first initial of the doctor's last name and state, i.e. Dr. G in NY. (I also revised the words do not, instead of not)
Regarding the rest of the revisions I don't feel they are necessary as our goal should be to keep the guidelines simple and straight forward but I will edit them, should the moderators feel they should be adopted:
Welcome to Lymenet! [hi] We are so glad that you have found us but are very sorry about the circumstances that have brought you here.
The hi sign should only be used in one place. I prefer it at the end, as I originally wrote it. Again, we are trying to look professional. IMO placing it after the welcome immediately breaks up the flow of the content and does not do so at the end and is a distraction, as well .
Listed below are some simple guidelines to help you place your "New" post and help our volunteers help you better.
** 1. Please place a ``new'' and ``separate'' post of your own rather than adding on to an existing post for the state you are seeking help in by clicking on the ``Post New Topic'' icon shown in the small black and white box located on the upper right hand side above the word ``Directory''.
Also, please only place one post in the ``seeking a doctor'' section, as opposed to duplicate posts in this section or other sections, as it makes it difficult for our volunteers to help you in your search for a Lyme Literate Medical Doctor (LLMD) and also keep track of duplicate posts.
** 2. When placing your post, we ask that you do not mention doctor's names if you have one in mind but only the first initial of the doctor's last name and state, i.e. Dr. G in NY.
** 3. We only require the state or states you are searching in, as our lists are set up by states and city names. ; not by county names. The words in bold are unnecessary and redundant, as it is already implied that we only require the state or states in question.
** 4. If your request is for a person under the age of 21, we use different lists for adults as opposed to children and young adults. The above leaves out important information that helps us respond to posters better. The age can simply be changed to 21 as follows:
4. It would be very helpful if you would provide us with a brief description of your situation and whether your request is for a person under the age of 21 , as we use different lists for adults as opposed to children and young adults. In rereading this, I think could should be changed to would.
5. Many of our members who help others on this board are very sick with Lyme Disease themselves and suffer from central nervous system and visual problems resulting in difficulty reading.
*** We ask that you please break up your paragraphs as has been done here and double space between each paragraph.
If you feel the words in bold are necessary that's fine with me but the sentence, as I wrote it, implies that by telling them to write their post in the manner that the guidelines are written. I think we want to try to avoid too many rules and things to remember, as not to confuse and overwhelm new posters.
Many of us simply cannot read long paragraphs and large blocks of information. Your help and cooperation will assure that we can help you better.
We look forward to getting to know you better and thank you in advance for taking the time to read our posting guidelines.
Welcome Aboard!
[ 11-19-2009, 12:46 PM: Message edited by: Abxnomore ]
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A note about the icon waving his hand. This can cause seizures in some people and for those with inner ear and vertigo, it is very disorienting and can make the text unable to be read.
It is best to not have any movement at all, especially in a first post, to someone new due to all the sensitivities involved. Some will just have to close it out and not be able to read it.
I know it's meant to be welcoming but there are many who could actually be hurt from having this movement in their eyes. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Point well taken. That is why I put it at the very end, after all the necessary information has been read.
It does not matter to me, whether it is included or not. I only want clear, concise, organized easy to find information that helps new posters and those who are trying to help them.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Still, even at the end, there will be those who cannot read the post with it on the page, anywhere at all. They will have to immediately disconnect.
I can't read any post with a wave in it. The Amazon ad to the left is hard enough to deal with. And I'm not the only neurolyme patient with vestibular disorders. There will be more to come along.
If a moving icon is anywhere on the screen, it is very dizzying and even can trigger a seizure. At the least, it gets nausea going and it's hard to concentrate for those with inner ear disorders on top of lyme.
The welcoming message will still come across without the wave. Just the word "Welcome" sets that tone.
* Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce, float, or blur or may appear doubled
* Discomfort from busy visual environments such as traffic, crowds, stores, and patterns.
* Sensitivity to light, glare, and moving or flickering lights; fluorescent lights may be especially troublesome
. . . . -
[ 11-19-2009, 03:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
I am politely asking here . . . in response to comments such as the following,
"How do we determine when we close off a post and who determines it, especially since you and I have no communication because you very unprofessionally axed me off the volunteer list and ranted and raved to everyone on the list as to why?"
Making these types of comments only gets things stirred up. Whatever happened is in the past. Can we please leave it there? This thread's purpose is supposed to be problem solving . . . not problem producing.
It is because of these kind of disrespectful and hurtful comments that I come to Lymenet these days only to do my job in "Seeking a Doctor."
Please remember when trying to be helpful in "Seeking a Doctor," that we are dealing with sick, scared and sometimes confused people. We should be gentle with them, and try to keep the information we are giving them as simple as possible, as to not overwhelm.
Six and Anna . . . thanks for your help in trying to get this issue solved.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
My comments are the truth and effect the present and were in response to a post that was deleted. You received the email in question, as you are on the volunteer list.
Can you not see that my being axed in the manner that I was affects everyone's ability to help in "seeking" with regard to updates and the flow of new information?
"It is because of these kind of disrespectful and hurtful comments that I come to Lymenet these days only to do my job in "Seeking a Doctor."
I feel the same way and that email that was sent out in anger to everyone on the email list was entirely disrespectful to me.
Do you condone letting personality issues or differences of opinion effect one's ability to do what we are here for, helping those who place posts in seeking?
You brought it up and highlighted it, rather than responding to the question asked in the original post asked by the moderator.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
The reason for this is so that those who answer can make sure that all are helped individually.
The simple answer is usually the best.
I'd like to offer an opinion here. I've helped in Seeking for a few years now and have realized a few things. It's a never ending job that is just overwhelming. I give kuddos to Betty and all of the helpers here, but.
This forum leaves new patients open to a push for one protocol or another thru PMs or unscrupulous Drs pushing referrals and posing as a patient who sees this Dr.
The Support Groups have amassed names of LLMDs that they refer patients to already. They also know of those Drs who are mentoring with LLMDs locally and which Drs may be moving to their area. We have contacted Support Groups in the past to clarify just who to refer to.
I suggest referring patients to those Support Groups....they are listed already in the Support Group link upper left in the leaves.
This would put it solely in the hands of those who have their feet on the ground. It would also eliminate some of the ego problems already clashing here, and phony lists that others are passing around LN.
On occasion, there is a State with no Support Group, they could be referred by the LDA (link above) or to a neighboring State.
It would be an easy job to make sure that all States are covered by someone ready to answer their questions, instead of newcomers trying to learn everything they need to know to be able to help in this Forum.
The only monitoring necessary would be to make sure that the Support Group links are up to date. This could be accomplished by word of mouth or checking with each one once a year.
Wouldn't that streamline the process of helping posters?
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I'm sorry but I'm not sure I fully understand your point and how it would eliminate the problem the moderator asked of us, but I do include all lyme organizations that give doctor referrals in my response, as well as, encourage every poster to
contact their local support group for help and additional information. I have support groups and state websites on the top of each of my state LLMD lists available to everyone.
I provide a wide variety of information for the person requesting a doctor to help educate themselves and decide what approach they would like to take in finding an LLMD.
Meg, I read your post again and now understand what you are saying. It's a novel idea, certainly would take less work on our part.
I don't feel that I am sending out phony lists but sending out very good comprehensive information that really helps others know all their options but you may well know more than I do on this subject.
It definitely a never ending overwhelming job, that's true. Personally for me, if I could just focus on helping and if the drama would disappear I'd be very happy.
[ 11-19-2009, 08:17 PM: Message edited by: Abxnomore ]
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
quote: I personally learn from many who don't help in seeking when they venture in, as I can PM them and ask them who they are referring and get perhaps the name of a new LLMD or at least some more feedback.
Respectfully, this is my point exactly, when there is a "new LLMD" you will be notified by the list holder. If you hear of someone, this person needs to be checked out, you cannot always take one persons word on it.
We have a responsibility here to get these patients the correct help.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
There is no one list holder here, but many. I certainly won't be notified by your list holder after her tirade about me and axing me off her list without good reason.
I am smart enough to PM members who have been long standing members and to check out the recommendations with reliable sources. I've been part of the Lyme community since l997 and I think I have learned a few things about this illness and the politics of it. I also aware of most of the LLMD's. I am not a new comer on the block.
I personally think your assessment is a bit off base. I would appreciate, however, that you not make assumptions about me suggesting that I am acting in a reckless manner, as that is absolutely not true.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey meg...
You said.. "I believe the LDA/local Support Groups should have SOLE responsibility in referring patients to proper LLMDs."
Just so you and others know....
Actually, the larger organizations do not have that for a goal and often do not want that responsibility. Legal issues, etc. Some do have an indirect referral service, but it is not something that they want to focus on.
Example- If you send XYZ to a doctor MNO... and they spend thousands of $$ and aren't satisfied or get worse (some even die).. the patient and/or family can come after you.
In fact, the libility of recommending patients go to certain places or certain doctors is a very toucy subject and can cross legal lines and set people up for problems.
And also keep in mind.. and this is important...
MANY of our LLMD's don't want to be on anyones list. There was actually legal action taken in the past to stop this practice. NOT pretty.
I rarely do referrals anymore, even though that is by far one of the most asked questions. I refer patients out to others... like the LDA site... or here. If I send out names it is never a full list... and only has a name and contact information.
I do not send out patient comments at all .. and only if asked and if I feel very informed... will I give an opinion.
Most of the time I just don't have time to do it too. As folks here know.. this is time consuming and draining.
For years on end I would call docs and update my lists with details... to even what insurances they carried.. in order to be helpful. It was updated several times a year and very accurate.
But, too many people have a different idea of what they are looking for.. and I'd rather they pick someone than having me do it for them.
Just throwing this out there for general knowledge.
While in theory your idea sounds good, I think many who need help would not get it. My reason for this comment is that if you look at the statistics there are many who only post one or two times in the "Seeking a Doctor" forum and then never post again on LymeNet.
I think that many people who do not get the help they need from this website would not make the extra effort to contact another website for help.
I briefly reviewed this topic and am a little unclear on who wrote the proposed new "posting guidelines". Whoever it was seems to have done a good job in my opinion. I don't think debating the wording is beneficial to anyone. As long as the main issues are covered then I think we need to move on.
I don't think it is really necessry to close topics. Just seems like more work. In the past when I spent more time on the board people used to repost things either to a new forum or as new topics. Maybe that would be the easiest way to handle piggyback posts.
Just use a topic heading something like "Repost for xxx -- Need LLMD in xxx city". And then provide the link in the post the person tagged on to.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I'm sorry Bea, I'm not understanding your point. There are many reasons a poster doesn't show up again on a board. Many lurk and read and never post again. Many are intimidated by the thought of the money and distance to travel to an LLMD and drop the whole thing.
And, some don't even read the referrals they receive from us here. For the most part we are thanked and a small percentage come back to the board to post.
It's one thing to speak to someone on the West Coast who's referring you to a Dr on the East Coast and another thing entirely to talk to someone in your State and attend a group meeting with lymies face to face.
I'm sure there are one or two doctors who may have a problem with referrals given, but I think for the most part, word of mouth and referrals would be their bread and butter.
I just feel this job can be better served another way for all the reasons I stated above.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Meg said. "I'm sure there are one or two doctors who may have a problem with referrals given."
Not to argue.. but it is much more serious than that!
These "lists" and referrals are not looked on well by many docs. I can still hear some of the most gentle and kind LLMD's exploding when talking about this topic.
I would guess if asked... at least 80% would say they do NOT want to be on a list, or be mentioned on the internet and/or have their information shared publicly.
Many are concerned because:
It puts them at risk to have their information out there. Back in the "old days" we would NEVER, EVER, EVER give out a list. We protected our LLMD's as if they were gold.. and they still are.
Without them, where would we be?
And even today I have docs contact information who have stated they do NOT want to be on any lists for any reasons. In fact, I am getting more of those comments these days, now that I think about it.
Also...
They can't respond if a bad referral is given or bad comments are out there floating around. It really isn't fair to only have one side of a story presented. For example...
Maybe some here will remember the "supposed" patient that came here and reported that her LLMD raped her. It was a long drawn out ordeal.. all made highly public on these boards... and many people were freaking out...
And when we finally got to the truth ... many had been duped in the process and were believing it to be true and were spreading it around... well....
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hi Is there anyway that if there is or are "lists" that somehow "lymenet" helpers and people here can get together to work together and come together and make sure that the newbies are not responded to by a handful of people with separate lists.
From what I have been reading the separation is only due to the inability of people being able to work together? Thats really not acceptable,, is it?
Its a support group and I see that there is such divide in even those few who are trying to help others.
Remember what you have in COMMON and look at that and embrace it.....
We got to work together..
This disease is too difficult and complicated to stand divided..
Its obvious there is and has been divide.
Maybe time to step back and think ...of "why"
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Springshowers -- I couldn't agree with you more! I had hoped that internal conflict issues could be put aside.
But I see now that, for some people, the ego has become more important than compassion and understanding. That's just the way it is.
TC -- The information that I forward is the LLMD name and contact information. I only send names for the LLMDs in my area (MD/VA/DC). I have called the offices of the LLMDs and asked for their permission to be added to the list. I do not forward personal recommendations to newbies.
Only about 30% of lists that I send are ever read. But for those people that do read the lists, we provide a vital service.
We need to be more mindful and respectful of everyone involved -- LLMD, newbie, list providers, lymnet moderators . . .
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
i'm sure i'm missing everything important that is not spelled out in capital letters with boinky men, and am sorry if so,
but
am seconding TinCup's point (I think). I have seen and heard for myself, directly, from LLMD's but also from other Lyme-literate supporters/professionals, and their opinion is 100% unanimous: DO NOT MENTION (MY) NAME ON ANY PUBLIC FORUM.
for what that is worth.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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WildCondor
Unregistered
posted
I'm going to chime in here and say that I have seen some of these "lists" you guys send. In my opinion, you guys need to accept some kind of responsibility for referring new patients to doctors who you do not know! Some of these names on these "lists" are NOT LLMD's AT ALL. Be careful with what you are doing and who you are sending it too. A large reason why people are on this forum still sick is because they have been wrongly referred to a non-LLMD. Watch what you are doing.
Patients...always ask a few members what they think, make sure you ask folks who have actually SEEN said doctor. Don't assume that because one or 2 posters calls a doc a LLMD, means that they are one.
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Hi WildCondor! This really is a very complicated topic.
As I said earlier, I only recommend in my area (MD/VA/DC) and I have done a lot of research in verifying the information on my list.
I am considering taking on another area -- a state that I had lived in for many years and am familiar with. It will take me quite some time to compile and verify the LLMDs before I can forward the list to people requesting information.
I am willing to do this because we are so short staffed in the "Seeking a Doctor" section.
But there are not nearly enough volunteers to take the time to do this kind of research for each and every state.
After reading TC and your comments, it makes me wonder if Lymenet should even be offering this service. But on the other hand, I know that I am well today because someone cared enough to send me the list for my state. I know how important that is.
So . . . it is Catch-22. Any thoughts?
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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