Re: Help try to end to the confusion between Misophonia and 4S

[Guest guest]

--- Interestingly Dr. Hall at Univ of FL thinks that 4S is a form of

hyperacusus. Dr. Jastreboff thinks it is a form of misophonia. " our "

Dr. thinks it is separate. Who knows what to do? I will go to

the hyperacusis board and support Ingrid.

> Dear all,

>

> My personal search for understanding, clarity and a cure for 4S has

> taken me into a heated discussion over on the Hyperacusis Network

> Forum. I have 4S, and like many people here I have found the

> Hyperacusis forum difficult to participate with for lots of reasons.

>

> One reason that the Hyperacusis Forum is difficult for me and people

> with 4S, is they have a policy that discourages the use of the word

> 4S. People who use the term 4S are given a fairly harsh reprimand

from

> the moderator. People posting over there are constantly

> self-censoring, or actually being censored by others, because of

this

> policy.

>

> I realise that this is an emotional topic, especially on the

> Hyperacusis forum. I understand that many people here have chosen

not

> to go to that forum because of this, amongst other reasons, and

> completely understand why.

>

> But I think we can do something to address this, and for clarity,

for

> everyone, here, there an in the profession, it is important that we

do.

>

> I and really concerned that Dr. Marsha 's research work could

> get held up by the kind of censorship and confusion that the policy

on

> the Hyperacusis Forum creates.

>

> I have just proposed a policy change on the Hyperacusis Network

which

> allows for the use of the name 4S. If you support this proposal then

> now would be a very good time to go the the thread called " NIH study

> for those with Misophonia " (yeah, confusing I know), and support the

> proposal there. It's worth a try, change is difficult but we need to

> support change, especially when change will hopefully support us.

>

> This is what I have suggested on the Hyperacusis Network.

>

> Proposal to members of this Forum, [the Hyperacusis Forum]

>

> There is confusion in this Forum about the use of the names

> " Misophonia " and " 4S " .

> The policy in this Forum to date has been to discourage or disallow

> use of the name 4S.

>

> • This policy is adding to the confusion.

> • This policy impinges on freedom of expression.

> • This policy makes the job of the moderator more difficult that it

> needs to be.

>

> Can I encourage everyone here to take some time to think of a more

> creative solution to *allow* the use of both these terms.

>

> One suggestion would be for the introductory pages to the forum to

> explain any issues or confusions around the use of Misophonia and

4S.

>

> Thank you.

> Ingrid.

>

[Guest guest]

Hi Ingrid,I admire your dedication and drive to open the minds of the people in the Hyperacusis Forum. I think that it really can be very unclear as to what is appropriate in forums and what isn't (i.e. religion, 4s). I do agree with you that some policies impinge on our freedom of expression. I think it's a matter of respecting members of the group and the person/people running the group (moderator), even though we may think they are not being reasonable.I still do not understand why they are so against using the term "4S" but I guess they must have their reasons. Do you think that maybe we should focus on trying to get everyone to join together and try to push for research to find a cure for all of us? I just think sometimes that we are

getting carried away with semantics and losing sight of what's really important. I think maybe the important thing is for all of us to help one another, whether it be termed "4S" or "misaphonia." You have done and are continuing to do so much for both groups. Thanks for all of your efforts.With Love,andraTo: Soundsensitivity Sent: Friday, December 19, 2008 8:29:39 AMSubject: Help try to end to the confusion between "Misophonia" and

"4S"

Dear all,My personal search for understanding, clarity and a cure for 4S hastaken me into a heated discussion over on the Hyperacusis NetworkForum. I have 4S, and like many people here I have found theHyperacusis forum difficult to participate with for lots of reasons.One reason that the Hyperacusis Forum is difficult for me and peoplewith 4S, is they have a policy that discourages the use of the word4S. People who use the term 4S are given a fairly harsh reprimand fromthe moderator. People posting over there are constantlyself-censoring, or actually being censored by others, because of thispolicy.I realise that this is an emotional topic, especially on theHyperacusis forum. I understand that many people here have chosen notto go to that forum because of this, amongst other reasons, andcompletely understand why.But I think we can do something to address this, and for

clarity, foreveryone, here, there an in the profession, it is important that we do. I and really concerned that Dr. Marsha 's research work couldget held up by the kind of censorship and confusion that the policy onthe Hyperacusis Forum creates. I have just proposed a policy change on the Hyperacusis Network whichallows for the use of the name 4S. If you support this proposal thennow would be a very good time to go the the thread called "NIH studyfor those with Misophonia" (yeah, confusing I know), and support theproposal there. It's worth a try, change is difficult but we need tosupport change, especially when change will hopefully support us.This is what I have suggested on the Hyperacusis Network.Proposal to members of this Forum, [the Hyperacusis Forum]There is confusion in this Forum about the use of the names"Misophonia" and "4S".The policy in this Forum to date

has been to discourage or disallowuse of the name 4S. • This policy is adding to the confusion.• This policy impinges on freedom of expression.• This policy makes the job of the moderator more difficult that itneeds to be.Can I encourage everyone here to take some time to think of a morecreative solution to *allow* the use of both these terms. One suggestion would be for the introductory pages to the forum toexplain any issues or confusions around the use of Misophonia and 4S.Thank you.Ingrid.------------------------------------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

[Guest guest]

Hey Ingrid... The battle continues LOL. I'm starting to wonder

something. At the hyperacusis site they are so hell-bent on keeping

the " misophonia " term and I really don't think we will EVER change

their minds... unless research proves them wrong. Some there are

stubborn as a mule. I personally don't see why they just can't put up

a " warning " that the topic being discussed in that thread is an open

discussion with no proven facts. What I'm wondering though is if

eventually they will just close the thread if we keep arguing about

it? I know that the moderator keeps deleting posts and partial posts

(mine included) which makes for very confusing reading for those who

haven't followed it from day 1 (so annoying!). I guess I'm just

worried that the whole topic will disappear and the e-mail address for

the NIH we posted in the first post will no longer be visible for

people who need it... especially since the debate has gotten a bit

uglier as of late. What do you think?

>

> Dear all,

>

> My personal search for understanding, clarity and a cure for 4S has

> taken me into a heated discussion over on the Hyperacusis Network

> Forum. I have 4S, and like many people here I have found the

> Hyperacusis forum difficult to participate with for lots of reasons.

>

> One reason that the Hyperacusis Forum is difficult for me and people

> with 4S, is they have a policy that discourages the use of the word

> 4S. People who use the term 4S are given a fairly harsh reprimand from

> the moderator. People posting over there are constantly

> self-censoring, or actually being censored by others, because of this

> policy.

>

> I realise that this is an emotional topic, especially on the

> Hyperacusis forum. I understand that many people here have chosen not

> to go to that forum because of this, amongst other reasons, and

> completely understand why.

>

> But I think we can do something to address this, and for clarity, for

> everyone, here, there an in the profession, it is important that we do.

>

> I and really concerned that Dr. Marsha 's research work could

> get held up by the kind of censorship and confusion that the policy on

> the Hyperacusis Forum creates.

>

> I have just proposed a policy change on the Hyperacusis Network which

> allows for the use of the name 4S. If you support this proposal then

> now would be a very good time to go the the thread called " NIH study

> for those with Misophonia " (yeah, confusing I know), and support the

> proposal there. It's worth a try, change is difficult but we need to

> support change, especially when change will hopefully support us.

>

> This is what I have suggested on the Hyperacusis Network.

>

> Proposal to members of this Forum, [the Hyperacusis Forum]

>

> There is confusion in this Forum about the use of the names

> " Misophonia " and " 4S " .

> The policy in this Forum to date has been to discourage or disallow

> use of the name 4S.

>

> • This policy is adding to the confusion.

> • This policy impinges on freedom of expression.

> • This policy makes the job of the moderator more difficult that it

> needs to be.

>

> Can I encourage everyone here to take some time to think of a more

> creative solution to *allow* the use of both these terms.

>

> One suggestion would be for the introductory pages to the forum to

> explain any issues or confusions around the use of Misophonia and 4S.

>

> Thank you.

> Ingrid.

>

[Guest guest]

That moderator is very against anything 4s! I'm confused. Why do we care what they think? They have a totally different hearing disorder than 4s. We recognize their disorder and feel badly for them, but they refuse to recognize ours. But I don't understand why we care what they think. Maybe I missed something. I know that Marsha fought with them long and hard on the matter and then gave up. She's an expert in the field and they still wouldn't listen.

I think that they just think they have the corner on hearing problems and no one else's compares.

I wouldn't waste my time. They can't help us anyway. Again, if I missed something, I'm sorry.

Thanks for all your efforts though.

Kathy

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Ingrid SpielmanSent: Thursday, December 18, 2008 10:17 PMTo: Soundsensitivity Subject: Re: Re: Help try to end to the confusion between "Misophonia" and "4S"

Dear All,

The moderator over on the Hyperacusis site has twice deleted my post suggesting a policy change.

If you go there you won't find it. They have crossed the line between self-censorship and outright censorship.

There has got to be something we can do about this, it goes against all my values, it feels terrible.

Isn't this the land of freedom of speech. That is really important.

The moderator is just sitting there deleting and editing my posts. I'm doing everything I can to conform with the rules of the board.

Those who have been reading that thread know how tough its been. Well things have only just started to get tough as far as I'm concerned.

Any help would be appreciated.

Ingrid.

This is precisely WHY we need a study. This condition is so unknownthat there is no same answer from any two doctors. Dr. 's termis the most descriptive for what we actually experience I think. Youhear the name and know immediately that it's what you have. Theproblem is... Misophonia is the only term that is actually in medicaljournals and that is recognized by "some" doctors. It's the onlything that's relatively 'close' to 4S. Just because it's in writingdoesn't mean it's what we have like those at the hyperacusis sitethink. We need research so bad!!>> --- Interestingly Dr. Hall at Univ of FL thinks that 4S is a form of > hyperacusus. Dr. Jastreboff thinks it is a form of misophonia. "our" > Dr. thinks it is separate. Who knows what to do? I will go to > the hyperacusis board and support Ingrid.>

[Guest guest]

Hi Kathy,I thought I was getting some where with them, but I wouldn't recommend reading the thread because they are sock puppeting and editing their old posts and ours. It's pretty toxic over there actually. You're probably wise to say away. Ingrid.That moderator is very against anything 4s! I'm confused. Why do we care what they think? They have a totally different hearing disorder than 4s. We recognize their disorder and feel badly for them, but they refuse to recognize ours. But I don't understand why we care what they think. Maybe I missed something. I know that Marsha fought with them long and hard on the matter and then gave up. She's an expert in the field and they still wouldn't listen. I think that they just think they have the corner on hearing problems and no one else's compares. I wouldn't waste my time. They can't help us anyway. Again, if I missed something, I'm sorry. Thanks for all your efforts though. Kathy Re: Re: Help try to end to the confusion between "Misophonia" and "4S"Dear All,The moderator over on the Hyperacusis site has twice deleted my post suggesting a policy change.If you go there you won't find it. They have crossed the line between self-censorship and outright censorship.There has got to be something we can do about this, it goes against all my values, it feels terrible. Isn't this the land of freedom of speech. That is really important.The moderator is just sitting there deleting and editing my posts. I'm doing everything I can to conform with the rules of the board.Those who have been reading that thread know how tough its been. Well things have only just started to get tough as far as I'm concerned.Any help would be appreciated.Ingrid.This is precisely WHY we need a study. This condition is so unknownthat there is no same answer from any two doctors. Dr. 's termis the most descriptive for what we actually experience I think. Youhear the name and know immediately that it's what you have. Theproblem is... Misophonia is the only term that is actually in medicaljournals and that is recognized by "some" doctors. It's the onlything that's relatively 'close' to 4S. Just because it's in writingdoesn't mean it's what we have like those at the hyperacusis sitethink. We need research so bad!!>> --- Interestingly Dr. Hall at Univ of FL thinks that 4S is a form of > hyperacusus. Dr. Jastreboff thinks it is a form of misophonia. "our" > Dr. thinks it is separate. Who knows what to do? I will go to > the hyperacusis board and support Ingrid.>

[Guest guest]

Hey Darlene,No one can discuss anything or progress any debate if censorship is going on. That's why the US Constitution is so damn great. - and those values are so important!. But that doesn't make me want to give up. Now that I've actually experienced that for myself, it makes me more determined. I thought USA really upheld anti-censorship and there would be some ruling, that might even apply to an internet forum? I'm thinking, (raging) ...OK, could we write to the people who run the Hyperacusis Network (not just the forum). Hang on, let me guess the network is run by, Dan, Rob and , and his sock puppets? Now my sense of humour is returning, thank goodness.Well, if they close the thread we can put the email address back up. So I wouldn't worry too much about that just now.But what can we do? I thought the debate only got ugly, because those guys are really close to realising that their number is up. I think the post- where Dr. Hall from Florida mentioned the 4S word might have done it for them. I'm sure he'll be receiving emails from Dan, Rob and and possibly DR. Nagler and others too, probably as we speak. Hummm. So I can stick around til Sunday, but they have threatened to kick me off the board now.One reason these people don't want us to use the word 4S, is that it will get a google ranking, and gain traction in the profession and the industry. But that doesn't help us either. I'm just trying to think of creative ways around this. Unfortunately, when censorship is involved, without getting kind of underhand and crazy about it, you can't do much. May be we just need to think of the great founding fathers who created the constitution. What would they have done. Actually, didn't they go to war over this stuff. (Sorry my US history goes right back to uni days, and, forgive me, I'm Australian).I don't know.Ingrid.Hey Ingrid... The battle continues LOL. I'm starting to wondersomething. At the hyperacusis site they are so hell-bent on keepingthe "misophonia" term and I really don't think we will EVER changetheir minds... unless research proves them wrong. Some there arestubborn as a mule. I personally don't see why they just can't put upa "warning" that the topic being discussed in that thread is an opendiscussion with no proven facts. What I'm wondering though is ifeventually they will just close the thread if we keep arguing aboutit? I know that the moderator keeps deleting posts and partial posts(mine included) which makes for very confusing reading for those whohaven't followed it from day 1 (so annoying!). I guess I'm justworried that the whole topic will disappear and the e-mail address forthe NIH we posted in the first post will no longer be visible forpeople who need it... especially since the debate has gotten a bituglier as of late. What do you think? >> Dear all,> > My personal search for understanding, clarity and a cure for 4S has> taken me into a heated discussion over on the Hyperacusis Network> Forum. I have 4S, and like many people here I have found the> Hyperacusis forum difficult to participate with for lots of reasons.> > One reason that the Hyperacusis Forum is difficult for me and people> with 4S, is they have a policy that discourages the use of the word> 4S. People who use the term 4S are given a fairly harsh reprimand from> the moderator. People posting over there are constantly> self-censoring, or actually being censored by others, because of this> policy.> > I realise that this is an emotional topic, especially on the> Hyperacusis forum. I understand that many people here have chosen not> to go to that forum because of this, amongst other reasons, and> completely understand why.> > But I think we can do something to address this, and for clarity, for> everyone, here, there an in the profession, it is important that we do. > > I and really concerned that Dr. Marsha 's research work could> get held up by the kind of censorship and confusion that the policy on> the Hyperacusis Forum creates. > > I have just proposed a policy change on the Hyperacusis Network which> allows for the use of the name 4S. If you support this proposal then> now would be a very good time to go the the thread called "NIH study> for those with Misophonia" (yeah, confusing I know), and support the> proposal there. It's worth a try, change is difficult but we need to> support change, especially when change will hopefully support us.> > This is what I have suggested on the Hyperacusis Network.> > Proposal to members of this Forum, [the Hyperacusis Forum]> > There is confusion in this Forum about the use of the names> "Misophonia" and "4S".> The policy in this Forum to date has been to discourage or disallow> use of the name 4S. > > • This policy is adding to the confusion.> • This policy impinges on freedom of expression.> • This policy makes the job of the moderator more difficult that it> needs to be.> > Can I encourage everyone here to take some time to think of a more> creative solution to *allow* the use of both these terms. > > One suggestion would be for the introductory pages to the forum to> explain any issues or confusions around the use of Misophonia and 4S.> > Thank you.> Ingrid.>

[Guest guest]

The problem is that the " rule " is to not say 4S or selective sound

sensitivity or soft sound sensitivity etc... You break that rule and

they will kick you out. That is why I always say " misophonia " and put

it in quotes because I don't believe it one bit. It's their word not

mine. What they don't realize is that they set themselves up for this

discussion because of the fact that they used to use the term 4S there

too... just look in the old posts. If they don't like it, it's their

own fault. I'll try to post something there to calm it down a bit.

Pretty much impossible with picking apart every thing you say!

I have no interest in arguing with them any longer about the

terminology... it's like beating my head against a brick wall. What I

want is an honest discussion of what is going on with us so that

anyone else who ends up there because of " google " will not be so

confused of all the knit-picking going on. Plus, I will continue to

refer them there... until that is banned too.

>

> Dear All,

>

> The moderator over on the Hyperacusis site has twice deleted my post

> suggesting a policy change.

> If you go there you won't find it. They have crossed the line between

> self-censorship and outright censorship.

> There has got to be something we can do about this, it goes against

> all my values, it feels terrible.

> Isn't this the land of freedom of speech. That is really important.

>

> The moderator is just sitting there deleting and editing my posts. I'm

> doing everything I can to conform with the rules of the board.

> Those who have been reading that thread know how tough its been. Well

> things have only just started to get tough as far as I'm concerned.

> Any help would be appreciated.

>

> Ingrid.

>

>

[Guest guest]

We will never get a higher google ranking than the Hyperacusis forum, from a Yahoo group.We need to get Dr. J's website up to the top on google or, get the other 4S website hitting the top of the list. That's the sort of stuff I do for a living, and would like to help with, but I can't log into the forums on the 4s website due to a technical problem. Oh well, I guess we just have to hope that the NIH has got the name thing sorted. They seem to be heading in the right direction so far, and if Dr. J is right in thinking that 4S might not be related to Hyperacusis, then the NIH will realise that calling it Misophonia is going to confuse the profession even more.May be if Dr. more openly associated Dan McL with the name 4S, then of the 3 big egos over there, would suddenly come on board with us on the name thing. Then we just have two egos and the sock puppets to contend with and I don't think that will be too difficult. Let's face it if we get Dan McL across the line, he runs that Network, so he controls the moderation. Right?Ingrid.The problem is that the "rule" is to not say 4S or selective soundsensitivity or soft sound sensitivity etc... You break that rule andthey will kick you out. That is why I always say "misophonia" and putit in quotes because I don't believe it one bit. It's their word notmine. What they don't realize is that they set themselves up for thisdiscussion because of the fact that they used to use the term 4S theretoo... just look in the old posts. If they don't like it, it's theirown fault. I'll try to post something there to calm it down a bit. Pretty much impossible with picking apart every thing you say!I have no interest in arguing with them any longer about theterminology... it's like beating my head against a brick wall. What Iwant is an honest discussion of what is going on with us so thatanyone else who ends up there because of "google" will not be soconfused of all the knit-picking going on. Plus, I will continue torefer them there... until that is banned too. >> Dear All,> > The moderator over on the Hyperacusis site has twice deleted my post > suggesting a policy change.> If you go there you won't find it. They have crossed the line between > self-censorship and outright censorship.> There has got to be something we can do about this, it goes against > all my values, it feels terrible.> Isn't this the land of freedom of speech. That is really important.> > The moderator is just sitting there deleting and editing my posts. I'm > doing everything I can to conform with the rules of the board.> Those who have been reading that thread know how tough its been. Well > things have only just started to get tough as far as I'm concerned.> Any help would be appreciated.> > Ingrid.> >

[Guest guest]

Darlene,I can't post, or PM over on the Hyperacusis Board any more. I've been booted off.I was going to help you out with recruitment. Damn. But really, I think you do a pretty damn fine job of it. Better than I could, I'd probably scare people off by being too intense. I wanted to send a PM to debbie, before I left, now I can't. Would you be able to let her know that I wanted to thank her for being so smart, and to let her know that I will be turning my attention to looking for an OCD specialist who might be able to help me, on her suggestion. I also wanted to share a few jokes with her about sock puppeting, but I'll have to let you do that, if you want. I'll have to speak to you here. I think you have my private email, I know it shouldn't need to come to it, but don't hesitate to send me stuff. Can you tell Lynn that too.OH I'm missing everyone already. Oh and I won't be able to say bye to Liam. She was my rock along with you.Ingrid.

[Guest guest]

Ah, a word of advice there, is actually a physician who

suffers from T and I am fond of the moderator but he is convinced that

his ideas take priority.

That is why I left that group some time ago and only returned to check

it out once in a while.

The recent debates will probably mean that I will in all likelihood

stop back out again. The only issue I have is that the ones who do go

there with these symptoms are left to think they have only misophonia

and no real recourse for treatment options.

Dr. J

[Guest guest]

I figured out that he was in the Profession. I can't figure out how they let him through med school? He's not very bright.Or may be the T & H has just got to him. I've tried feeling sorry for him... but. any way, it's over there for me. I got booted off for my suggested policy change.One cannot argue with censorship.I.Ah, a word of advice there, is actually a physician who suffers from T and I am fond of the moderator but he is convinced that his ideas take priority. That is why I left that group some time ago and only returned to check it out once in a while. The recent debates will probably mean that I will in all likelihood stop back out again. The only issue I have is that the ones who do go there with these symptoms are left to think they have only misophonia and no real recourse for treatment options.Dr. J

[Guest guest]

I will let them know. Sorry it came to this.

>

> Darlene,

>

> I can't post, or PM over on the Hyperacusis Board any more. I've been

> booted off.

>

> I was going to help you out with recruitment. Damn. But really, I

> think you do a pretty damn fine job of it. Better than I could, I'd

> probably scare people off by being too intense.

>

> I wanted to send a PM to debbie, before I left, now I can't.

>

> Would you be able to let her know that I wanted to thank her for being

> so smart, and to let her know that I will be turning my attention to

> looking for an OCD specialist who might be able to help me, on her

> suggestion. I also wanted to share a few jokes with her about sock

> puppeting, but I'll have to let you do that, if you want.

>

> I'll have to speak to you here. I think you have my private email, I

> know it shouldn't need to come to it, but don't hesitate to send me

> stuff. Can you tell Lynn that too.

>

> OH I'm missing everyone already. Oh and I won't be able to say bye to

> Liam. She was my rock along with you.

>

> Ingrid.

>

[Guest guest]

Dr. J.It has never been my intention to make things more difficult for you. That is the last thing I want.I see that you are maintaining a professional profile, which must be difficult at times, trying to help.I'm sorry if I have in any way made that more difficult, I thought I could help, by not getting drawn in, and just using logic.But I have been censored now. So I can't do anything about that.Ingrid.Ah, a word of advice there, is actually a physician who suffers from T and I am fond of the moderator but he is convinced that his ideas take priority. That is why I left that group some time ago and only returned to check it out once in a while. The recent debates will probably mean that I will in all likelihood stop back out again. The only issue I have is that the ones who do go there with these symptoms are left to think they have only misophonia and no real recourse for treatment options.Dr. J

[Guest guest]

Thanks for the info Dr. . I think means well, but he's

so difficult to try and have a conversation with when he picks apart

everything you say! LOL. You said, " The only issue I have is that the

ones who do go there with these symptoms are left to think they have

only misophonia " . That is my main reason for going back. I was led

there first by my internet searches and didn't think " Misophonia " fit

me completely. Unless you luck out by finding this site or the other

new website, it feels like a dead end. My most recent post there

points out a few things that confused me in the beginning and the

whole reason for the first post on that thread, which was telling them

the address of the NIH. I never thought it would turn into yet

another debate... go figure.

>

> Ah, a word of advice there, is actually a physician who

> suffers from T and I am fond of the moderator but he is convinced that

> his ideas take priority.

>

> That is why I left that group some time ago and only returned to check

> it out once in a while.

>

> The recent debates will probably mean that I will in all likelihood

> stop back out again. The only issue I have is that the ones who do go

> there with these symptoms are left to think they have only misophonia

> and no real recourse for treatment options.

>

> Dr. J

>

[Guest guest]

Darlene said "Unless you luck out by finding this site or the othernew website, it feels like a dead end."Darlene with huge respect and admiration, that isn't lucking out, that about the google rankings.We should be trying to get on top of that. It's not that hard, it doesn't have to cost anything, but the whole board would need use one site. We can't split the accesses between Dr. J's site and the new website.Something to think about, if we have to.Ingrid.Thanks for the info Dr. . I think means well, but he'sso difficult to try and have a conversation with when he picks aparteverything you say! LOL. You said, "The only issue I have is that theones who do go there with these symptoms are left to think they haveonly misophonia". That is my main reason for going back. I was ledthere first by my internet searches and didn't think "Misophonia" fitme completely. Unless you luck out by finding this site or the othernew website, it feels like a dead end. My most recent post therepoints out a few things that confused me in the beginning and thewhole reason for the first post on that thread, which was telling themthe address of the NIH. I never thought it would turn into yetanother debate... go figure. >> Ah, a word of advice there, is actually a physician who > suffers from T and I am fond of the moderator but he is convinced that > his ideas take priority. > > That is why I left that group some time ago and only returned to check > it out once in a while. > > The recent debates will probably mean that I will in all likelihood > stop back out again. The only issue I have is that the ones who do go > there with these symptoms are left to think they have only misophonia > and no real recourse for treatment options.> > Dr. J>

[Guest guest]

Don't worry about this overly much, Ingrid. This whole drama has a

very long history and you will see Dan, " " and Rob, generally

rise up and form a kind of brick wall on this one.

Remember they really know nothing about 4S or misophonia other than

what they have read in books by people who, I hate to say it, also

know hardly anything about it!

Dr. Jastreboff DOES know about it and has tried to help and think of

ways to approach it. He and I have had many talks over tea about this

and he is actually quite supportive of new therapies as he and I both

are completely aware that the sound-therapies used for tinnitus or

hyperacusis do not seem to render a 'cure' for this problem.

You are not the first people to be ejected from the Hyperacusis

Network and I am sorry about that. I have never been ejected but I

chose to depart myself for these reasons and actually I should say

that was one person who wrote me a note of sympathy.

So life goes in circles, people are complex and infuriating and

delightful and compassionate and wicked....all in the same day,

sometimes.

The good thing is that those posts will stand and when folks come

searching, they will disocver the newer more appropriate places and

it is our responsibility to make a warm welcome and push for more

more more.

Marsha , AuD

>

> Ah, a word of advice there, is actually a physician who

> suffers from T and I am fond of the moderator but he is convinced

that

> his ideas take priority.

>

> That is why I left that group some time ago and only returned to

check

> it out once in a while.

>

> The recent debates will probably mean that I will in all likelihood

> stop back out again. The only issue I have is that the ones who do

go

> there with these symptoms are left to think they have only

misophonia

> and no real recourse for treatment options.

>

> Dr. J

>

[Guest guest]

Dr. J's right Ingrid. The post explaining the possible study with the

e-mail address for the NIH is still there and it will give people who

find themselves there another place to look. The conversation that

took place there (the parts that still remain) will make people think

and hopefully keep searching on their own. It would be great if Dr.

Jasterboff would ultimately lend a hand in the help of pushing a

study... even if he does think it's " Misophonia " . Bottom line is we

need research done when even the things he recommends doesn't seem to

work completely.

Dr. J said this: " So life goes in circles, people are complex and

infuriating and delightful and compassionate and wicked....all in the

same day, sometimes. "

LOL!!! That totally describes a day on the hyperacusis network

Darlene

>

> Don't worry about this overly much, Ingrid. This whole drama has a

> very long history and you will see Dan, " " and Rob, generally

> rise up and form a kind of brick wall on this one.

>

> Remember they really know nothing about 4S or misophonia other than

> what they have read in books by people who, I hate to say it, also

> know hardly anything about it!

>

> Dr. Jastreboff DOES know about it and has tried to help and think of

> ways to approach it. He and I have had many talks over tea about this

> and he is actually quite supportive of new therapies as he and I both

> are completely aware that the sound-therapies used for tinnitus or

> hyperacusis do not seem to render a 'cure' for this problem.

>

> You are not the first people to be ejected from the Hyperacusis

> Network and I am sorry about that. I have never been ejected but I

> chose to depart myself for these reasons and actually I should say

> that was one person who wrote me a note of sympathy.

>

> So life goes in circles, people are complex and infuriating and

> delightful and compassionate and wicked....all in the same day,

> sometimes.

>

> The good thing is that those posts will stand and when folks come

> searching, they will disocver the newer more appropriate places and

> it is our responsibility to make a warm welcome and push for more

> more more.

>

> Marsha , AuD

>

[Guest guest]

Darlene, How you going there mate! - just letting out the (Au)'strailian in me.Yep, DR. J is right and very wise:- : "So life goes in circles, people are complex andinfuriating and delightful and compassionate and wicked....all in thesame day, sometimes."I was also really pleased to read this because I had been wondering about Jabestroff's views on DR. 's work.> Dr. Jastreboff DOES know about it and has tried to help and think of > ways to approach it. He and I have had many talks over tea about this > and he is actually quite supportive of new therapies as he and I both > are completely aware that the sound-therapies used for tinnitus or > hyperacusis do not seem to render a 'cure' for this problem.Dr. Jabestroff is not close minded to future findings. That's very good.I'm trying to be "briefer" in my posts now. My new goal.Best wishes,Ingrid.Dr. J's right Ingrid. The post explaining the possible study with thee-mail address for the NIH is still there and it will give people whofind themselves there another place to look. The conversation thattook place there (the parts that still remain) will make people thinkand hopefully keep searching on their own. It would be great if Dr.Jasterboff would ultimately lend a hand in the help of pushing astudy... even if he does think it's "Misophonia". Bottom line is weneed research done when even the things he recommends doesn't seem towork completely. Dr. J said this: "So life goes in circles, people are complex andinfuriating and delightful and compassionate and wicked....all in thesame day, sometimes."LOL!!! That totally describes a day on the hyperacusis network ;)Darlene>> Don't worry about this overly much, Ingrid. This whole drama has a > very long history and you will see Dan, "" and Rob, generally > rise up and form a kind of brick wall on this one.> > Remember they really know nothing about 4S or misophonia other than > what they have read in books by people who, I hate to say it, also > know hardly anything about it!> > Dr. Jastreboff DOES know about it and has tried to help and think of > ways to approach it. He and I have had many talks over tea about this > and he is actually quite supportive of new therapies as he and I both > are completely aware that the sound-therapies used for tinnitus or > hyperacusis do not seem to render a 'cure' for this problem.> > You are not the first people to be ejected from the Hyperacusis > Network and I am sorry about that. I have never been ejected but I > chose to depart myself for these reasons and actually I should say > that was one person who wrote me a note of sympathy.> > So life goes in circles, people are complex and infuriating and > delightful and compassionate and wicked....all in the same day, > sometimes.> > The good thing is that those posts will stand and when folks come > searching, they will disocver the newer more appropriate places and > it is our responsibility to make a warm welcome and push for more > more more.> > Marsha , AuD>

[Guest guest]

Hi andra,

Thanks for your thoughts... I probably did step over the line on the

other forum, and I'm sorry if I offended anyone. They have dealt with

me now in equal measure. Apart from missing some great people there,

I'm no longer upset, about being banned. They were probably right to

let me go.

I've arrived at a good place of understanding now.

Thanks andra,

See you round here.

Ingrid.

To any one else who is still following this, (those of us with a tad

of of good old OCD... )

I had been confused by the introductory text on the Hyperacusis site

and on Dr. 's site which suggests that 4S IS a type of

Hyperacusis.

I now think this:

Dr. 's views suggest that 4S has nothing to do with hyperacusis.

Once the profession catches up they will choose a name with a differnt

etyology, one that is not linked with Phonophonbia, Hyperacusis, or

Tinnitus, to help clarify and eliminate the current confusion.

Dr. , Darlene, Debbie, and others, Thanks for 'showing me the

keys' (or whatever Rob said ). He's right, sort of.

Ingrid.

>

> Hi Ingrid,

>

> I admire your dedication and drive to open the minds of the people

in the Hyperacusis Forum.

>

> I think that it really can be very unclear as to what is appropriate

in forums and what isn't (i.e. religion, 4s). I do agree with you

that some policies impinge on our freedom of expression. I think it's

a matter of respecting members of the group and the person/people

running the group (moderator), even though we may think they are not

being reasonable.

>

> I still do not understand why they are so against using the term

" 4S " but I guess they must have their reasons. Do you think that

maybe we should focus on trying to get everyone to join together and

try to push for research to find a cure for all of us? I just think

sometimes that we are getting carried away with semantics and losing

sight of what's really important. I think maybe the important thing

is for all of us to help one another, whether it be termed " 4S " or

" misaphonia. " You have done and are continuing to do so much for both

groups. Thanks for all of your efforts.

>

> With Love,

>

> andra

>

>

>

>

> ________________________________

>

> To: Soundsensitivity

> Sent: Friday, December 19, 2008 8:29:39 AM

> Subject: Help try to end to the confusion between

" Misophonia " and " 4S "

>

> Dear all,

>

> My personal search for understanding, clarity and a cure for 4S has

> taken me into a heated discussion over on the Hyperacusis Network

> Forum. I have 4S, and like many people here I have found the

> Hyperacusis forum difficult to participate with for lots of reasons.

>

> One reason that the Hyperacusis Forum is difficult for me and people

> with 4S, is they have a policy that discourages the use of the word

> 4S. People who use the term 4S are given a fairly harsh reprimand from

> the moderator. People posting over there are constantly

> self-censoring, or actually being censored by others, because of this

> policy.

>

> I realise that this is an emotional topic, especially on the

> Hyperacusis forum. I understand that many people here have chosen not

> to go to that forum because of this, amongst other reasons, and

> completely understand why.

>

> But I think we can do something to address this, and for clarity, for

> everyone, here, there an in the profession, it is important that we do.

>

> I and really concerned that Dr. Marsha 's research work could

> get held up by the kind of censorship and confusion that the policy on

> the Hyperacusis Forum creates.

>

> I have just proposed a policy change on the Hyperacusis Network which

> allows for the use of the name 4S. If you support this proposal then

> now would be a very good time to go the the thread called " NIH study

> for those with Misophonia " (yeah, confusing I know), and support the

> proposal there. It's worth a try, change is difficult but we need to

> support change, especially when change will hopefully support us.

>

> This is what I have suggested on the Hyperacusis Network.

>

> Proposal to members of this Forum, [the Hyperacusis Forum]

>

> There is confusion in this Forum about the use of the names

> " Misophonia " and " 4S " .

> The policy in this Forum to date has been to discourage or disallow

> use of the name 4S.

>

> • This policy is adding to the confusion.

> • This policy impinges on freedom of expression.

> • This policy makes the job of the moderator more difficult that it

> needs to be.

>

> Can I encourage everyone here to take some time to think of a more

> creative solution to *allow* the use of both these terms.

>

> One suggestion would be for the introductory pages to the forum to

> explain any issues or confusions around the use of Misophonia and 4S.

>

> Thank you.

> Ingrid.

>

>

> ------------------------------------

>

> 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