Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 > > They wear you out over there I know! But I appreciate your effort and > contribution! Hang in there... we are all in this boat together. We > just need to keep it afloat! > > Darlene > > > > You know, that is why I QUIT that group for quite a whle. I just left when the moderator said the term 4S was not allowed! Yes, that is true. So I left. I visit rarely now. Look, trust your own perceptions. That is at the very least a guideline that is more helpful than names. Dr. J > --- In Soundsensitivity , " ingrid.spielman " <ingrid@> > wrote > > > > I know I getting a bit off topic now, but I've spent a lot of time > > recently on the Hyperacusis Network forum, and although I think people > > there are well intentioned, I feel really confused and quite depressed > > from being there. I'm not sure they really 'get' what the people here > > are suffering with, but some people there seem so sure that we just > > need to try their approaches. > > > > So I come back here, to be with the people I know share my symptoms, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Dr. ... Yes, I remember that is why you quit there and I rarely go there anymore myself although I'm currently in a new battle that I see you are taking part of as well! LOL. It's amazing what posting a letter from the NIH will stir up!! I go there and lurk to try and direct those with 4S here because I feel this is a more appropriate place for them where they can speak freely without being picked apart. Thanks for creating this site!! Darlene --- In Soundsensitivity , " anthro_pop " > > You know, that is why I QUIT that group for quite a whle. I just > left when the moderator said the term 4S was not allowed! > > Yes, that is true. So I left. > > I visit rarely now. > > Look, trust your own perceptions. That is at the very least a > guideline that is more helpful than names. > > Dr. J > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 ..... I think my brain just twitched. Stubborn stupidity should be painful for those who have it, not those who are trying to reach out, correct ignorance, and help others. That is one dense moderator. = M-F. ----- Original Message ----- > You know, that is why I QUIT that group for quite a whle. I just > left when the moderator said the term 4S was not allowed! > > Yes, that is true. So I left. > > I visit rarely now. > > Look, trust your own perceptions. That is at the very least a > guideline that is more helpful than names. > > Dr. J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 I'm seriously going to scream!! It's a good thing I can't strangle someone through the computer screen! PLEASE tell me your opinion on this... On the Hyperacusis network I'm currently in the battle about Misophonia and someone posted this... " In fact your misophonia sounds just like that artificially- concocted " subcategory " . But of course YOU responded to treatment - so it COULDN'T have been the " subcategory " ... because those folks are unique (or at least that's what some would have us all believe!) " I took this as pure sarcasm that they were mocking Dr. J's theory and those who believe it. I posted that I thought the sarcasm should be left on the floor because sarcasm in topic like this is not funny and he/she should respect others feelings. The moderator (dork) edited my post and then told everyone that they thought NO ONE was being sarcastic. Am I seeing something that's not there? Maybe I'm wrong but I took that as sarcasm. Oh I'm so ticked off right now! I'm so glad I have this place to run to! Darlene > > .... I think my brain just twitched. > > Stubborn stupidity should be painful for those who have it, not those who > are trying to reach out, correct ignorance, and help others. > > That is one dense moderator. > > > = M-F. > > > ----- Original Message ----- > > > You know, that is why I QUIT that group for quite a whle. I just > > left when the moderator said the term 4S was not allowed! > > > > Yes, that is true. So I left. > > > > I visit rarely now. > > > > Look, trust your own perceptions. That is at the very least a > > guideline that is more helpful than names. > > > > Dr. J > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hi Darlene, I tried to find 's post but couldn't...is it on that same thread? I did a post search but couldn't find it either...please let me know.I don't understand why they take such an offense when 4s is mentioned? Do they feel like we're a different group trying to take something away from them? I haven't read all the posts so I don't know the history fully but I don't understand what the problem is with using 4s instead of misaphonia...as far as I'm concerned, if I want to call it "my 4-legged enemy" I should have a right to...what's the real issue/problem? Shouldn't the moderator let the members of the group be able to communicate and express their ideas to one another, I don't believe that the situation warranted intervention from the moderator...the response sounded a little menacing I think! Don't let it get to you, you have a lot of support ) And certainly don't let other people's insecurities affect you, you're doing a lot of good recruiting people over to this group that can better identify with the symptoms of 4s.andraTo: Soundsensitivity Sent: Wednesday, December 10, 2008 11:06:42 AMSubject: Re: 4S versus Misophonia I'm seriously going to scream!! It's a good thing I can't strangle someone through the computer screen! PLEASE tell me your opinion on this... On the Hyperacusis network I'm currently in the battle about Misophonia and someone posted this..."In fact your misophonia sounds just like that artificially-concocted "subcategory". But of course YOU responded to treatment - so it COULDN'T have been the "subcategory" ... because those folks are unique (or at least that's what some would have us all believe!)"I took this as pure sarcasm that they were mocking Dr. J's theory and those who believe it. I posted that I thought the sarcasm should be left on the floor because sarcasm in topic like this is not funny and he/she should respect others feelings. The moderator (dork) edited my post and then told everyone that they thought NO ONE was being sarcastic. Am I seeing something that's not there? Maybe I'm wrong but I took that as sarcasm. Oh I'm so ticked off right now! I'm so glad I have this place to run to!Darlene>> .... I think my brain just twitched.> > Stubborn stupidity should be painful for those who have it, not those who > are trying to reach out, correct ignorance, and help others.> > That is one dense moderator.> > > = M-F.> > > ----- Original Message ----- > > > You know, that is why I QUIT that group for quite a whle. I just> > left when the moderator said the term 4S was not allowed!> >> > Yes, that is true. So I left.> >> > I visit rarely now.> >> > Look, trust your own perceptions. That is at the very least a> > guideline that is more helpful than names.> >> > Dr. J>------------------------------------PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.Thank you. MJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hah! How ironic... it's magically disappeared! Lovely, now my post looks like I'm criticizing over nothing.. Go figure. *rolls eyes* > > > > .... I think my brain just twitched. > > > > Stubborn stupidity should be painful for those who have it, not > those who > > are trying to reach out, correct ignorance, and help others. > > > > That is one dense moderator. > > > > > > = M-F. > > > > > > ----- Original Message ----- > > From: " anthro_pop " <Oregon7@> > > > You know, that is why I QUIT that group for quite a whle. I just > > > left when the moderator said the term 4S was not allowed! > > > > > > Yes, that is true. So I left. > > > > > > I visit rarely now. > > > > > > Look, trust your own perceptions. That is at the very least a > > > guideline that is more helpful than names. > > > > > > Dr. J > > > > > > ------------------------------------ > > PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. > > ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE. > Thank you. MJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hi Darlene,I'm about to go there and see whether my latest post has had a reply. As you know there is one person making some very damning remarks about people who identify with this 4S syndrome and the syndrome itself. I want to see if he has got back to me - I'm hoping that it will be a misunderstanding. I'll get back to you, somehow, and see if I can generate and support too.I would like to understand what makes some people there so determined that we must do things their way, and so unable to *hear* that their way has not worked for us, and that it is not for a lack of trying. Do they have some vested interest somewhere that is not fully disclosed?I'm a bit out of synch time wise, posting from Sydney, I'm always posting when you people are presumably asleep or at work.CheersIngrid.Hah! How ironic... it's magically disappeared! Lovely, now my post looks like I'm criticizing over nothing.. Go figure. *rolls eyes*> >> > .... I think my brain just twitched.> > > > Stubborn stupidity should be painful for those who have it, not > those who > > are trying to reach out, correct ignorance, and help others.> > > > That is one dense moderator.> > > > > > = M-F.> > > > > > ----- Original Message ----- > > From: "anthro_pop" <Oregon7@>> > > You know, that is why I QUIT that group for quite a whle. I just> > > left when the moderator said the term 4S was not allowed!> > >> > > Yes, that is true. So I left.> > >> > > I visit rarely now.> > >> > > Look, trust your own perceptions. That is at the very least a> > > guideline that is more helpful than names.> > >> > > Dr. J> >> > > > ------------------------------------> > PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. > > ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.> Thank you. MJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hey Ingrid... yes, I know who you are speaking of! I received a PM from Lynn saying that she agreed with me and that this fellow has used other names on the board before. I asked her why so I'll let you know. I have no problem with 'obeying " their rules as far as using the term " Misophonia " on their board. I get that they don't want to " confuse " people. But, anyone who actually has this doesn't get confused by the term 4S. They just keep getting their knickers in a knot over nothing. I'm a bit surprised to see that 's post was removed especially after the moderator clearly remarked that there was no " sarcasm " . Obviously someone else thought the same thing. I was mad that he edited my post yet let that one remain! So I'm glad it's gone... it was offensive to me as I'm sure it would have been to you. Hopefully they won't edit the correction I made to my post saying that the comment made by is no longer there therfore my comment is no longer relavent. I can understand them editing people's posts if there were bad language, or really rude remarks towards someone but mine was not at all and I'm feeling even more like we can't express ourselves freely there. Rob is making an honest effort with us now, although I don't agree totally with him, I'm going along and humoring him for a while Darlene > > > > > > .... I think my brain just twitched. > > > > > > Stubborn stupidity should be painful for those who have it, not > > those who > > > are trying to reach out, correct ignorance, and help others. > > > > > > That is one dense moderator. > > > > > > > > > = M-F. > > > > > > > > > ----- Original Message ----- > > > From: " anthro_pop " <Oregon7@> > > > > You know, that is why I QUIT that group for quite a whle. I > just > > > > left when the moderator said the term 4S was not allowed! > > > > > > > > Yes, that is true. So I left. > > > > > > > > I visit rarely now. > > > > > > > > Look, trust your own perceptions. That is at the very least a > > > > guideline that is more helpful than names. > > > > > > > > Dr. J > > > > > > > > > > > ------------------------------------ > > > > PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO > MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP > MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. > > > > ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE. > > Thank you. MJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Darlene, I left that site years ago. They are totally closed minded to the possibility that 4s is physical in any way. I don't understand it. They actually get angry because of 4s--it's weird. I would just leave them be. Kathy -----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of DarleneSent: Tuesday, December 09, 2008 9:07 PMTo: Soundsensitivity Subject: Re: 4S versus Misophonia I'm seriously going to scream!! It's a good thing I can't strangle someone through the computer screen! PLEASE tell me your opinion on this... On the Hyperacusis network I'm currently in the battle about Misophonia and someone posted this..."In fact your misophonia sounds just like that artificially-concocted "subcategory". But of course YOU responded to treatment - so it COULDN'T have been the "subcategory" ... because those folks are unique (or at least that's what some would have us all believe!)"I took this as pure sarcasm that they were mocking Dr. J's theory and those who believe it. I posted that I thought the sarcasm should be left on the floor because sarcasm in topic like this is not funny and he/she should respect others feelings. The moderator (dork) edited my post and then told everyone that they thought NO ONE was being sarcastic. Am I seeing something that's not there? Maybe I'm wrong but I took that as sarcasm. Oh I'm so ticked off right now! I'm so glad I have this place to run to!Darlene>> .... I think my brain just twitched.> > Stubborn stupidity should be painful for those who have it, not those who > are trying to reach out, correct ignorance, and help others.> > That is one dense moderator.> > > = M-F.> > > ----- Original Message ----- > > > You know, that is why I QUIT that group for quite a whle. I just> > left when the moderator said the term 4S was not allowed!> >> > Yes, that is true. So I left.> >> > I visit rarely now.> >> > Look, trust your own perceptions. That is at the very least a> > guideline that is more helpful than names.> >> > Dr. J> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 I used to be a regular over there but very rarely visit now. I cannot believe the attitude that is being taken - they of all people should know the problems that getting an unrecognised problem accepted can lead to. Even if 4S is a branch of misophonia (I don't think it is) what is wrong with calling it by another name? Selective Sound Sensitivity Syndrome says exactly what the problem is - misophonia doesn't. Misophona, recruitment, hyperacusis, 4S - all different form of sensitvie hearing; in my opinion this is the same as different types of allergy or different forms of cancer. To: Soundsensitivity From: k.howe@...Date: Wed, 10 Dec 2008 08:55:29 -0500Subject: RE: Re: 4S versus Misophonia Darlene, I left that site years ago. They are totally closed minded to the possibility that 4s is physical in any way. I don't understand it. They actually get angry because of 4s--it's weird. I would just leave them be. Kathy -----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of DarleneSent: Tuesday, December 09, 2008 9:07 PMTo: Soundsensitivity Subject: Re: 4S versus Misophonia I'm seriously going to scream!! It's a good thing I can't strangle someone through the computer screen! PLEASE tell me your opinion on this... On the Hyperacusis network I'm currently in the battle about Misophonia and someone posted this..."In fact your misophonia sounds just like that artificially-concocted "subcategory". But of course YOU responded to treatment - so it COULDN'T have been the "subcategory" ... because those folks are unique (or at least that's what some would have us all believe!)"I took this as pure sarcasm that they were mocking Dr. J's theory and those who believe it. I posted that I thought the sarcasm should be left on the floor because sarcasm in topic like this is not funny and he/she should respect others feelings. The moderator (dork) edited my post and then told everyone that they thought NO ONE was being sarcastic. Am I seeing something that's not there? Maybe I'm wrong but I took that as sarcasm. Oh I'm so ticked off right now! I'm so glad I have this place to run to!Darlene>> .... I think my brain just twitched.> > Stubborn stupidity should be painful for those who have it, not those who > are trying to reach out, correct ignorance, and help others.> > That is one dense moderator.> > > = M-F.> > > ----- Original Message ----- > > > You know, that is why I QUIT that group for quite a whle. I just> > left when the moderator said the term 4S was not allowed!> >> > Yes, that is true. So I left.> >> > I visit rarely now.> >> > Look, trust your own perceptions. That is at the very least a> > guideline that is more helpful than names.> >> > Dr. J>Great search results, great prizes. BigSnapSearch.com Search now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 If any more of us are there, I propose a mass exodus in protest. They might be glad to see you leave, but if the reason "You're all closed-minded and the mod has no intention of being fair with our posts" should get the point across. = M-F. RE: Re: 4S versus Misophonia Darlene, I left that site years ago. They are totally closed minded to the possibility that 4s is physical in any way. I don't understand it. They actually get angry because of 4s--it's weird. I would just leave them be. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Well put! RE: Re: 4S versus Misophonia Darlene, I left that site years ago. They are totally closed minded to the possibility that 4s is physical in any way. I don't understand it. They actually get angry because of 4s--it's weird. I would just leave them be. Kathy -----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of DarleneSent: Tuesday, December 09, 2008 9:07 PMTo: Soundsensitivity Subject: Re: 4S versus Misophonia I'm seriously going to scream!! It's a good thing I can't strangle someone through the computer screen! PLEASE tell me your opinion on this... On the Hyperacusis network I'm currently in the battle about Misophonia and someone posted this..."In fact your misophonia sounds just like that artificially-concocted "subcategory". But of course YOU responded to treatment - so it COULDN'T have been the "subcategory" ... because those folks are unique (or at least that's what some would have us all believe!)"I took this as pure sarcasm that they were mocking Dr. J's theory and those who believe it. I posted that I thought the sarcasm should be left on the floor because sarcasm in topic like this is not funny and he/she should respect others feelings. The moderator (dork) edited my post and then told everyone that they thought NO ONE was being sarcastic. Am I seeing something that's not there? Maybe I'm wrong but I took that as sarcasm. Oh I'm so ticked off right now! I'm so glad I have this place to run to!Darlene>> .... I think my brain just twitched.> > Stubborn stupidity should be painful for those who have it, not those who > are trying to reach out, correct ignorance, and help others.> > That is one dense moderator.> > > = M-F.> > > ----- Original Message ----- > > > You know, that is why I QUIT that group for quite a whle. I just> > left when the moderator said the term 4S was not allowed!> >> > Yes, that is true. So I left.> >> > I visit rarely now.> >> > Look, trust your own perceptions. That is at the very least a> > guideline that is more helpful than names.> >> > Dr. J> Great search results, great prizes. BigSnapSearch.com Search now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Darlene, I think you are either a trouper or an angel for hanging in there, and in particular you are doing a wonderful job telling people there about this site. Keep up the good work. And I completely agree with what everyone else here says about that group. I'm getting close to the point where I want to give up on that group too, but I still would like to try to figure out what is motivating/causing them to be how they are. Ingrid. > > > > .... I think my brain just twitched. > > > > Stubborn stupidity should be painful for those who have it, not > those who > > are trying to reach out, correct ignorance, and help others. > > > > That is one dense moderator. > > > > > > = M-F. > > > > > > ----- Original Message ----- > > From: " anthro_pop " <Oregon7@> > > > You know, that is why I QUIT that group for quite a whle. I just > > > left when the moderator said the term 4S was not allowed! > > > > > > Yes, that is true. So I left. > > > > > > I visit rarely now. > > > > > > Look, trust your own perceptions. That is at the very least a > > > guideline that is more helpful than names. > > > > > > Dr. J > > > > > > > > ------------------------------------------------------------------- --------- > -- > Great search results, great prizes. BigSnapSearch.com Search now > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Yes they do seem to get angry about it... it kinda makes me laugh. I usually don't post there anymore unless it's to nab someone and refer them to this site but after I posted the letter from the NIH it started up again. I plan on letting it fizzle eventually except for recruiting! > > Darlene, > > I left that site years ago. They are totally closed minded to the > possibility that 4s is physical in any way. I don't understand it. They > actually get angry because of 4s--it's weird. > > I would just leave them be. > > Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Thanks Ingrid! I don't know about the angel part LOL. I don't think we will ever figure out why they are the way they are. I think they just like to assume they know everything. And thanks everyone for your opinions about what's going on at the other site. I never realized so many people here had left there! Now I see why! I just want people who end up there from searching the web for what could be wrong with them to feel welcomed and to find help. I think this is a better place for that. > > Darlene, > > I think you are either a trouper or an angel for hanging in there, and in particular you are > doing a wonderful job telling people there about this site. Keep up the good work. > And I completely agree with what everyone else here says about that group. > > I'm getting close to the point where I want to give up on that group too, but I still would > like to try to figure out what is motivating/causing them to be how they are. > Ingrid. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Darlene, and Dr. J.I've just made another big post there. I'm trying to get to the heart of the matter there. Wish me luck.Ingrid.Thanks Ingrid! I don't know about the angel part LOL. I don't think we will ever figure out why they are the way they are. I think they just like to assume they know everything. And thanks everyone for your opinions about what's going on at the other site. I never realized so many people here had left there! Now I see why! I just want people who end up there from searching the web for what could be wrong with them to feel welcomed and to find help. I think this is a better place for that.>> Darlene, > > I think you are either a trouper or an angel for hanging in there, and in particular you are > doing a wonderful job telling people there about this site. Keep up the good work.> And I completely agree with what everyone else here says about that group. > > I'm getting close to the point where I want to give up on that group too, but I still would > like to try to figure out what is motivating/causing them to be how they are. > Ingrid. Quote Link to comment Share on other sites More sharing options...
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