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

[Guest guest]

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]

Having never been to the hyperacusis network forum, I don't know

where it is, can you give me a link!!

Thanks

>

> 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]

http://hyperacusis.net/I've just posted in the thread about the possible NIH research - but I don't think I'll be popular!

You will have to register to post on the forum.

> To: Soundsensitivity > Date: Thu, 18 Dec 2008 23:56:57 +0000> Subject: Re: Help try to end to the confusion between "Misophonia" and "4S"> > Having never been to the hyperacusis network forum, I don't know > where it is, can you give me a link!!> > Thanks> > >> > 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

[Guest guest]

Hey LInda,Here is the link, in the main nav you need to go to the forum.I think you could also benefit from a warning - the debate is really pretty heated, and gets nasty.OK, you've been warned. Come back soon.And thankshttp://www.hyperacusis.net/Having never been to the hyperacusis network forum, I don't know where it is, can you give me a link!!Thanks>> 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]

This is precisely WHY we need a study. This condition is so unknown

that there is no same answer from any two doctors. Dr. 's term

is the most descriptive for what we actually experience I think. You

hear the name and know immediately that it's what you have. The

problem is... Misophonia is the only term that is actually in medical

journals and that is recognized by " some " doctors. It's the only

thing that's relatively 'close' to 4S. Just because it's in writing

doesn't mean it's what we have like those at the hyperacusis site

think. 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]

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.>