Re: NIH Research Idea---was gum cracking MIL

[Guest guest]

I don't really know. I know there were several people on the H board who were

very upset about the fact that we were not using the term Misophonia, etc. and

despite the facts, presented again and again, that there is NO DATA on the use

of a 3-week music protocol which was held out at the gold standard for

misophonics, much less all of you, there was a very rigid lack of open-thinking

towards the idea that you all are something else.

At that same time, someone went in and made sure that the 4S section of

wikipedia was torpedoed. Removed and so on. I spent hours trying to convince

wiki that we had something real going on, to no avail against one reviewer who

insisted on its shut down...I was told to publish more, get more audiologists,

etc. to publish more, and then come back with multiple citations and it would be

allowed.

It was exhausting and depressing, honestly.

So, it has been a struggle, it still is a struggle, and we will still fight like

h*** to be recognized and supported. At least I will, as my own son has this,

too.

There you go.

Nate's Mom

> >

> > We wrote to the NIH and they said they were interested in a study. Being

> > that they are funded by the government and they do research on undiagnosed

> > conditions, I thought they were a good place to start.

> >

> >

> >

> > It would be interesting if we all wrote our Representatives. However, that

> > would consist of letters going to many different Congressmen who would

> > probably brush us off as " crazies. " We would need to focus a letter

> writing

> > campaign towards one entity, so it wouldn't be so diluted across all 50

> > states. Believe me, I've thought of this. I've also thought of sitting

> > outside of the Capitol (I live in Washington DC) and possibly marching

> with

> > signs, or even doing a hunger strike to get publicity for this condition.

> >

> >

> >

> > I agree that since we pay taxes (many taxes), we deserve research for this

> > condition that affects so many people.

> >

> >

> >

> > We bombarded the NIH back in 2008 and they seemed to be interested and

> said

> > they needed time to put a study together. I need to email them and ask how

> > it is going.

> >

> >

> >

> > As far as shouting " WE NEED RESEARCH " that is pretty much my mantra and

> > shows how frustrated I am with this condition. I didn't mean it rudely.

> >

> >

> >

> > Thanks for your input.

> >

> >

> >

> > From: Soundsensitivity

> <mailto:Soundsensitivity%40yahoogroups.com>

> > [mailto:Soundsensitivity

> <mailto:Soundsensitivity%40yahoogroups.com> ] On Behalf Of

> > SeriouslyConsiderTheCat

> > Sent: Tuesday, February 08, 2011 10:39 PM

> > To: Soundsensitivity

> <mailto:Soundsensitivity%40yahoogroups.com>

> > Subject: Re: My Gum Cracking Mother in Law: She's STILL

> > AT IT! UGH!

> >

> >

> >

> >

> >

> >

> > --- In Soundsensitivity

> <mailto:Soundsensitivity%40yahoogroups.com> , " Kathy Howe " <k.howe@> wrote

> [in

> > part]:

> >

> >

> > What seems to be obviously " logical " just isn't with 4s. This condition is

> > so bizarre and complex.

> >

> > ............

> >

> > In many ways it is; in many ways it isn't.

> >

> > ..............

> >

> > WE NEED RESEARCH!!!

> >

> > ..............

> >

> > I agree. And since you SHOUTED IT IN CAPS, you must feel very strongly

> > about it. So in the past six months exactly how many letters have you

> > written to your representatives in Congress explaining what 4S is, how it

> > impacts the economy, and why the government needs to allocate funds for 4S

> > research?

> >

> > No need to answer. Just something to think about.

> >

> > smn

> >

>

[Guest guest]

No he's not. YOU, Marsha, are a sweet guy. But Dan? Dan is a dishonest, deceitful, manipulative, controlling, unethical, enabling guy who only acts sweet for the purpose of gaining influence and winning adulation from those who know no better.I disagree with you far more than I agree with you, Marsha, but that has nothing to do with your kindness or fairness, which I believe are admirable. YOU are sweet.But Malcore? What kind of a "sweet guy" allows people to post on his board about the problems they encounter with 4S, but only if they call it something else? (I don't prefer the term 4S, but folks ought to be free to call it that if they so choose.) Controlling ain't sweet. At least not in my book.A sweet guy? Obviously you are not aware of the fact that at one time Malcore was posting on his own board using three different nicks, one of which would repeatedly bait and insult in gross violation of the rules of the board ... until the Dan Malcore nick "came to the rescue." It was like a friggin' soap opera, for goodness' sakes.A sweet guy? Obviously you are not aware of the fact that Malcore publishes copyrighted material in his newsletter without seeking permission from or even notifying the author ... and furthermore alters the wording of that material. Is that sweet?A sweet guy? I recently became aware of the fact that on numerous occasions Malcore edited my posts on his board so that they would convey what he wanted to convey the way he wanted to convey it. And I would never have been the wiser had I not come across an old post of "mine" while doing a search, a post that I never would have written the way it appeared. Is that sweet?So, Marsha, you want to know who interfered with your efforts to get NIH's attention? Well there are only four people I know of who have the clout to do so and/or enough facility with the written word to make the folks at NIH take notice. Four people. That's it. Well, I didn't do it, and Dr. Jastreboff wouldn't do it. So as I see it, that leaves one or both of the very same two individuals who got Wikipedia to remove the Selective Sound Sensitivity Syndrome page from their site.Sweet? That's not exactly the first word that comes to mind.smn>> Not at all. Dan is a very sincere sweet guy ...

[Guest guest]

No he's not. YOU, Marsha, are a sweet guy. But Dan? Dan is a dishonest, deceitful, manipulative, controlling, unethical, enabling guy who only acts sweet for the purpose of gaining influence and winning adulation from those who know no better.I disagree with you far more than I agree with you, Marsha, but that has nothing to do with your kindness or fairness, which I believe are admirable. YOU are sweet.But Malcore? What kind of a "sweet guy" allows people to post on his board about the problems they encounter with 4S, but only if they call it something else? (I don't prefer the term 4S, but folks ought to be free to call it that if they so choose.) Controlling ain't sweet. At least not in my book.A sweet guy? Obviously you are not aware of the fact that at one time Malcore was posting on his own board using three different nicks, one of which would repeatedly bait and insult in gross violation of the rules of the board ... until the Dan Malcore nick "came to the rescue." It was like a friggin' soap opera, for goodness' sakes.A sweet guy? Obviously you are not aware of the fact that Malcore publishes copyrighted material in his newsletter without seeking permission from or even notifying the author ... and furthermore alters the wording of that material. Is that sweet?A sweet guy? I recently became aware of the fact that on numerous occasions Malcore edited my posts on his board so that they would convey what he wanted to convey the way he wanted to convey it. And I would never have been the wiser had I not come across an old post of "mine" while doing a search, a post that I never would have written the way it appeared. Is that sweet?So, Marsha, you want to know who interfered with your efforts to get NIH's attention? Well there are only four people I know of who have the clout to do so and/or enough facility with the written word to make the folks at NIH take notice. Four people. That's it. Well, I didn't do it, and Dr. Jastreboff wouldn't do it. So as I see it, that leaves one or both of the very same two individuals who got Wikipedia to remove the Selective Sound Sensitivity Syndrome page from their site.Sweet? That's not exactly the first word that comes to mind.smn>> Not at all. Dan is a very sincere sweet guy ...

[Guest guest]

No he's not. YOU, Marsha, are a sweet guy. But Dan? Dan is a dishonest, deceitful, manipulative, controlling, unethical, enabling guy who only acts sweet for the purpose of gaining influence and winning adulation from those who know no better.I disagree with you far more than I agree with you, Marsha, but that has nothing to do with your kindness or fairness, which I believe are admirable. YOU are sweet.But Malcore? What kind of a "sweet guy" allows people to post on his board about the problems they encounter with 4S, but only if they call it something else? (I don't prefer the term 4S, but folks ought to be free to call it that if they so choose.) Controlling ain't sweet. At least not in my book.A sweet guy? Obviously you are not aware of the fact that at one time Malcore was posting on his own board using three different nicks, one of which would repeatedly bait and insult in gross violation of the rules of the board ... until the Dan Malcore nick "came to the rescue." It was like a friggin' soap opera, for goodness' sakes.A sweet guy? Obviously you are not aware of the fact that Malcore publishes copyrighted material in his newsletter without seeking permission from or even notifying the author ... and furthermore alters the wording of that material. Is that sweet?A sweet guy? I recently became aware of the fact that on numerous occasions Malcore edited my posts on his board so that they would convey what he wanted to convey the way he wanted to convey it. And I would never have been the wiser had I not come across an old post of "mine" while doing a search, a post that I never would have written the way it appeared. Is that sweet?So, Marsha, you want to know who interfered with your efforts to get NIH's attention? Well there are only four people I know of who have the clout to do so and/or enough facility with the written word to make the folks at NIH take notice. Four people. That's it. Well, I didn't do it, and Dr. Jastreboff wouldn't do it. So as I see it, that leaves one or both of the very same two individuals who got Wikipedia to remove the Selective Sound Sensitivity Syndrome page from their site.Sweet? That's not exactly the first word that comes to mind.smn>> Not at all. Dan is a very sincere sweet guy ...

[Guest guest]

With all due respect, Heidi, you do not need a watchdog on anybody. You

need identify your goal and seek it in a purposeful way. That goal is

two-fold - a community goal and a personal goal. The community goal is

advocacy (to increase awareness and to whatever extent possible

research). And the personal goal is for each of you do what is

necessary to facilitate your own healing ... so that however much your

4S affects your life today, it will affect your life a little less

tomorrow. I personally don't see how Dan (or any other miscreant) fits

into that formula. So I would simply not involve him in any aspect of

your lives - community or personal. Worrying about what Dan. his

co-conspirator, or anybody else might try to do " next time around " just

isn't worth it.

At least that's how I see it.

smn

>

> Well, Cat, thanks for letting that cat out of the bag. Now I finally

understand the back story and know whose been the problem.

>

> Dr. J if this is accurate then the cat is right, Dan needs to be

treated as the enemy he is. And he's not sweet or sincere and clearly

must not be trusted. In politics and power you must know who your

opponents are in order to defeat/combat them. The campaign we seek for

research involves both politics and power, it just is, because research

involves the all mighty dollar.

>

> If we are to start up our campaign we need to have strategy to deal

with him as well as a strategy for our campaign. You must have a good

offense and a better defenses in my opinion. We must be prepared to

deflect the crap Dan has thrown at us (albeit behind our backs) in the

past.

>

> Please send me the ironical letter that got the NIH's attention as I

would be more than happy to review it and make suggestions. We need a

watchdog on Dan.

> Heidi

>

> Sent from my iPhone

[Guest guest]

With all due respect, Heidi, you do not need a watchdog on anybody. You

need identify your goal and seek it in a purposeful way. That goal is

two-fold - a community goal and a personal goal. The community goal is

advocacy (to increase awareness and to whatever extent possible

research). And the personal goal is for each of you do what is

necessary to facilitate your own healing ... so that however much your

4S affects your life today, it will affect your life a little less

tomorrow. I personally don't see how Dan (or any other miscreant) fits

into that formula. So I would simply not involve him in any aspect of

your lives - community or personal. Worrying about what Dan. his

co-conspirator, or anybody else might try to do " next time around " just

isn't worth it.

At least that's how I see it.

smn

>

> Well, Cat, thanks for letting that cat out of the bag. Now I finally

understand the back story and know whose been the problem.

>

> Dr. J if this is accurate then the cat is right, Dan needs to be

treated as the enemy he is. And he's not sweet or sincere and clearly

must not be trusted. In politics and power you must know who your

opponents are in order to defeat/combat them. The campaign we seek for

research involves both politics and power, it just is, because research

involves the all mighty dollar.

>

> If we are to start up our campaign we need to have strategy to deal

with him as well as a strategy for our campaign. You must have a good

offense and a better defenses in my opinion. We must be prepared to

deflect the crap Dan has thrown at us (albeit behind our backs) in the

past.

>

> Please send me the ironical letter that got the NIH's attention as I

would be more than happy to review it and make suggestions. We need a

watchdog on Dan.

> Heidi

>

> Sent from my iPhone

[Guest guest]

With all due respect, Heidi, you do not need a watchdog on anybody. You

need identify your goal and seek it in a purposeful way. That goal is

two-fold - a community goal and a personal goal. The community goal is

advocacy (to increase awareness and to whatever extent possible

research). And the personal goal is for each of you do what is

necessary to facilitate your own healing ... so that however much your

4S affects your life today, it will affect your life a little less

tomorrow. I personally don't see how Dan (or any other miscreant) fits

into that formula. So I would simply not involve him in any aspect of

your lives - community or personal. Worrying about what Dan. his

co-conspirator, or anybody else might try to do " next time around " just

isn't worth it.

At least that's how I see it.

smn

>

> Well, Cat, thanks for letting that cat out of the bag. Now I finally

understand the back story and know whose been the problem.

>

> Dr. J if this is accurate then the cat is right, Dan needs to be

treated as the enemy he is. And he's not sweet or sincere and clearly

must not be trusted. In politics and power you must know who your

opponents are in order to defeat/combat them. The campaign we seek for

research involves both politics and power, it just is, because research

involves the all mighty dollar.

>

> If we are to start up our campaign we need to have strategy to deal

with him as well as a strategy for our campaign. You must have a good

offense and a better defenses in my opinion. We must be prepared to

deflect the crap Dan has thrown at us (albeit behind our backs) in the

past.

>

> Please send me the ironical letter that got the NIH's attention as I

would be more than happy to review it and make suggestions. We need a

watchdog on Dan.

> Heidi

>

> Sent from my iPhone

[Guest guest]

I'm not sure who the jerk and/or jerks out there are ... but they exist.

When I first started searching the internet for noise sensitivity, one of the

first websites I came upon had a detailed front page on the different types of

hyperacusis. On that page between the descriptions they had a paragraph

describing what Dr. calls 4s. Basically they said it was not hyperacusis

and that people with this condition were the sickest of the sick. This was

described in a bad way comparable to saying we were psychotic schizophrenics who

choose our condition only to make the rest people around us miserable.

I wish I had copied and referenced the page at the time but I was just so

shocked. My first reaction was that obviously whoever wrote the article had the

" pleasure " of being around someone with 4s and it was someone they hated. It was

a hyperacusis website.

Luckily I did not stop searching and found this Yahoo group.

There is a political war going on among audiologists that has nothing to do with

us and everything to do with their selfishness and egos.

For awhile I thought that the reason no one would study us was because of money,

ie there are not enough of us for anyone to make a profit for developing a drug,

etc... that treated 4s.

Then over the years as I realized there is plenty of funding in our country to

study other weird conditions (synesthesia) and there is even more money

available to study gene sequences of all kinds of different animals and animal

fossils (obviously these studies don't turn a profit).

Our condition is not being studied because we have political enemies that don't

want us to be right. The sad thing is we (the actual 4s sufferers) don't even

have a strong unique premise on what is causing this condition; all we want is

for someone to do some serious unbiased studies and testing of people with our

condition.

For example, a few years ago, our first entries to Wikipedia were very quickly

contested and removed. I'm not surprised to hear that someone managed to prevent

a NIH study.

Honestly, I've become so dejected over this situation that I can barely stand to

read this website. We have 1200 people with a serious misery making debilitating

condition and we are treated worse than lepers by the medical community. I can

only hope that Karma punishes the people who are preventing our progress toward

research.

My older daughter is now 9 and hasn't started puberty that I can tell yet, but

probably will be starting soon. I am literally terrified that she will develop

this condition. It makes me cry when I even think about it. My younger daughter

is 6 1/2 and has struggled with her temper almost since birth. She has made

great progress and seems to be handling the world ok. It horrifies me to imagine

the destruction this condition could cause to her psyche if she were to develop

it.

Someday, somehow, someway .... if only we could get this stupid condition

studied. I have a feeling that if anyone ever did a study, proving the abnormal

brain activity with MRI imaging would actually be pretty easy. It would at least

be a start.

>

>

> I was going to write Carmen Brewer and ask what was going on. Are you

> saying that Dan Maclure is such a jerk that he derailed our efforts?

>

> From: Soundsensitivity

> [mailto:Soundsensitivity ] On Behalf Of M

> Sent: Tuesday, February 08, 2011 11:09 PM

> To: Soundsensitivity

> Subject: NIH Research Idea---was gum cracking MIL

>

>

>

>

>

> Kathy as you will recall we were making good headway there until that

> project was literally derailed by some negative input from unknown

> parties.....we should try again.

>

> Dr J

[Guest guest]

Not flames. Facts.

Rob and Dan (mostly Rob) were responsible for getting Wikipedia to

eliminate the 4S page. And one or both of them are responsible for the

NIH thingie. Why? Who the hell knows? Makes no sense to me. Probably

some sort of warped idea of " doing what's best for the community.

And I didn't say to string 'em up. I said to stay focused on your goal

and ignore the rest.

But at least now you know where the potholes are along the road.

You don't like the fact that Dan edits your posts. So I'm not the only

one whose posts are edited. And I sure as hell don't like when

somebody takes advantage of my name and reputation to push his own

agenda. All I'm saying is that a " sweet guy " doesn't do that sort of

thing.

Done now.

I proposed a two-part goal for this community. Any thoughts?

smn

>

> Flames already? you just got here. Good Lord, I am not a fan of Dan

Malcore, and

> I hate how he edits my posts, and I probably have no right to say

this, but

> maybe we could give the guy a trial first before we string him up? And

why would

> any of these 4 VIP give a rat's ass about a wikipedia page anyway?I

don't get

> it.

[Guest guest]

Kathy, as far as I know not a single audiologist was involved in the

Wikipedia and NIH incidents.

smn

--- In Soundsensitivity , " v_m_fen " wrote

[in part]:

> There is a political war going on among audiologists that has nothing

to do with us and everything to do with their selfishness and egos.

[Guest guest]

Ah, much of this is news to me, however, I still think that is probably water

under the bridge to some degree and as sweet as I am, of course, we just really

don't belong on there anyway.

These people don't have hyperacusis.

I know.

I have tested many of them.

LDLs are good to go.

So, let's go forward. I have seven audiologists who are either working with

this population currently or have some direct past experience so we are going to

run this first virtual gathering in February and see what happens.

You all keep that public site going with LINKS and comments to encourage newbies

to get involved.

Maybe we should talk over setting up some of those internet analytics so we can

make a data base for future activities.

Dr. J

[Guest guest]

That is truly sad if Rob had anything to do with this as well. I don't know

everything about him, or Dan for that matter (after all this is the internet),

but I do credit Rob for helping me learn CBT tactics and its helped me

personally a great deal.

But... I think you are right about having a community goal and a personal goal.

Lets leave Dan/Rob and the H network out of it. It won't do any good worrying

about them. We need to focus on us and what WE can do for ourselves.

By the way... my posts were edited also and some deleted all together.

Annoying.

> >

> > Flames already? you just got here. Good Lord, I am not a fan of Dan

> Malcore, and

> > I hate how he edits my posts, and I probably have no right to say

> this, but

> > maybe we could give the guy a trial first before we string him up? And

> why would

> > any of these 4 VIP give a rat's ass about a wikipedia page anyway?I

> don't get

> > it.

>

[Guest guest]

Well, ok, we can put the past to rest.

We have a good team here, very smart people.

Very interested in this subject, too!

So let's look forward and use our energy positively.

Let Kathy call Dr. Brewer this week and see what the lay of the land is, then

report back here.

I will gather up the clinicians for a group meeting and try to assess where the

main issues are situated at this point with them.

Several other good possibilities are on the horizon for more public-style

publicity for the near future.

Do help us by 'linking' to the public site, putting a FB link to it? spreading

the word to your medical providers and local audiologists to help raise

awareness, and some of you creative types could put a few things on YouTube?

So many people use Youtube now for so many purposes.

I will run thru the first data on the recent survey and publish it here, too.

Dr. J

[Guest guest]

I was feeling uplifted that the NIH was going to do research into

this. Many of us in this group, including myself, wrote to them

about our situation and the need to research and find help for the

many of us out there suffering from this condition. I got a response

back saying that they were going to let us know when the research

would start. I never heard back from them again. Others in this

group said they were told that someone said to the doctors looking

into this that what we have is called Mysphonia and that killed any

further interest.

Whomever said that did a great disservice to all of us, because what

we deal with is not a fear of sounds, which is what Mysphonia is.

I had told many people, including my therapist and lawyer, that the

NIH was going to do research into this condition we all have. I must

say I was totally let down by the NIH when I heard it got derailed.

Made me depressed for quite a while because now I had to explain to

everyone why the NIH wasn't going to research this condition. As far

as I'm concerned now, I'm stuck enduring this condition for the rest

of my life and I have to approach my life from that perspective. It

just makes things sooo much harder than they need be.

Some recognition from the NIH would have gone a long way for us. So

frustrating.

-Randall

Kathy as you will recall we were making good headway

there until that project was literally derailed by some

negative input from unknown parties.....we should try

again.

Dr J

>

> We wrote to the NIH and they said they were

interested in a study. Being

> that they are funded by the government and they do

research on undiagnosed

> conditions, I thought they were a good place to

start.

>

>

>

> It would be interesting if we all wrote our

Representatives. However, that

> would consist of letters going to many different

Congressmen who would

> probably brush us off as "crazies." We would need to

focus a letter writing

> campaign towards one entity, so it wouldn't be so

diluted across all 50

> states. Believe me, I've thought of this. I've also

thought of sitting

> outside of the Capitol (I live in Washington DC) and

possibly marching with

> signs, or even doing a hunger strike to get publicity

for this condition.

>

>

>

> I agree that since we pay taxes (many taxes), we

deserve research for this

> condition that affects so many people.

>

>

>

> We bombarded the NIH back in 2008 and they seemed to

be interested and said

> they needed time to put a study together. I need to

email them and ask how

> it is going.

>

>

>

> As far as shouting "WE NEED RESEARCH" that is pretty

much my mantra and

> shows how frustrated I am with this condition. I

didn't mean it rudely.

>

>

>

> Thanks for your input.

>

>

>

> From: Soundsensitivity

> [mailto:Soundsensitivity ]

On Behalf Of

> SeriouslyConsiderTheCat

> Sent: Tuesday, February 08, 2011 10:39 PM

> To: Soundsensitivity

> Subject: Re: My Gum Cracking

Mother in Law: She's STILL

> AT IT! UGH!

>

>

>

>

>

>

> --- In Soundsensitivity ,

"Kathy Howe" <k.howe@> wrote [in

> part]:

>

>

> What seems to be obviously "logical" just isn't with

4s. This condition is

> so bizarre and complex.

>

> ............

>

> In many ways it is; in many ways it isn't.

>

> ..............

>

> WE NEED RESEARCH!!!

>

> ..............

>

> I agree. And since you SHOUTED IT IN CAPS, you must

feel very strongly

> about it. So in the past six months exactly how many

letters have you

> written to your representatives in Congress

explaining what 4S is, how it

> impacts the economy, and why the government needs to

allocate funds for 4S

> research?

>

> No need to answer. Just something to think about.

>

> smn

>

[Guest guest]

Randall, you know we are strong and we are getting stronger and more united in

our mutual quest! We will make headway in this area, please don't get too

discouraged as you know, together we can make mavelous things happen, I truly

believe that.

All good journeys have a few rough patches but we will keep on going.

Marsha

[Guest guest]

Randall, you know we are strong and we are getting stronger and more united in

our mutual quest! We will make headway in this area, please don't get too

discouraged as you know, together we can make mavelous things happen, I truly

believe that.

All good journeys have a few rough patches but we will keep on going.

Marsha

[Guest guest]

Randall, you know we are strong and we are getting stronger and more united in

our mutual quest! We will make headway in this area, please don't get too

discouraged as you know, together we can make mavelous things happen, I truly

believe that.

All good journeys have a few rough patches but we will keep on going.

Marsha

[Guest guest]

Randall, misophonia is not the fear of sounds. Phonophobia is the fear

of sounds.

smn

--- In Soundsensitivity , Rand

wrote [in part]:

>

> Whomever said that did a great disservice to all of us, because what

we

> deal with is not a fear of sounds, which is what Mysphonia is.

[Guest guest]

*Hatred* of sounds, not fear. Whether hatred of particular sounds (4S) or hatred

of sound in general (annoyance hyperacusis?) is a debated point.

Either way, it was Dr who found (a) all us people with " whatever it is

we have " who do not have hyperacusis or tinnitus; ( that we most often start

having this reaction between 8 and 13; © that it often runs in families - and

not just the people we meet at the breakfast table each day but other relatives

too (e.g. the father who leaves the family long before the child starts having

the same sound sensitivity as the father had); and (d) it persists despite all

sorts of attempts at curing it.

This is one of the reasons why I am happy to let Dr J name it. I think she has

made it a central focus and moved much further with it than other professionals

have. I don't know any other health professional who has been so devoted to

" our " condition. So I would even happily call it " 's syndrome " in her

honour.

> >

> > Randall, misophonia is not the fear of sounds. Phonophobia is the fear

> > of sounds.

> >

> > smn

> >

> > --- In Soundsensitivity

> > <mailto:Soundsensitivity%40yahoogroups.com>, Rand <coderand@>

> > wrote [in part]:

> >

> > >

> > > Whomever said that did a great disservice to all of us, because what

> > we

> > > deal with is not a fear of sounds, which is what Mysphonia is.

> >

> >

>

[Guest guest]

Misophonia is an aversive response to sound [or to certain sounds] that

is characterized by increased activity within the limbic-autonomic axis.

In English that means it is a reaction to sound [or to certain sounds]

that is characterized by emotional and fight-or-flight responses.

Phonophobia is a type of misophonia wherein the emotional response is

specifically takes the form of fear.

Hope this helps.

smn

> >

> > Randall, misophonia is not the fear of sounds. Phonophobia is the

fear

> > of sounds.

> >

> > smn

> >

> > --- In Soundsensitivity

> > <mailto:Soundsensitivity%40yahoogroups.com>, Rand coderand@

> > wrote [in part]:

> >

> > >

> > > Whomever said that did a great disservice to all of us, because

what

> > we

> > > deal with is not a fear of sounds, which is what Mysphonia is.

> >

> >

>

[Guest guest]

Ian wrote [in part]:... it was Dr who found (a) all us people with "whatever it iswe have" who do not have hyperacusis or tinnitus; ( that we most often starthaving this reaction between 8 and 13; © that it often runs in families - andnot just the people we meet at the breakfast table each day but other relativestoo (e.g. the father who leaves the family long before the child starts havingthe same sound sensitivity as the father had); and (d) it persists despite allsorts of attempts at curing it.This is one of the reasons why I am happy to let Dr J name it. I think she hasmade it a central focus and moved much further with it than other professionalshave. I don't know any other health professional who has been so devoted to"our" condition. So I would even happily call it "'s syndrome" in herhonour................Let me address that point for a moment, because I believe it is extremely important.Having now had a chance to "thumb through" a generous sampling of the posts on this board, I absolutely understand that there is justification for calling this condition "4S," "Soft Sound Sensitivity Syndrome," "Selective Sound Sensitivity Syndrome," or whatever Dr. wishes to call it.At the same time, I am sure you will agree that the condition of which we are speaking is identical to - or at least a form of - misophonia, which is defined in the published scientific literature as an aversive response to sound [or to certain sounds] characterized by increased activity in the limbic and autonomic nervous systems.Now whether or not Dr. came up with the term 4S before she was ever aware of the term misophonia, the fact remains that as of today there are no articles in the juried scientific literature that refer to 4S, while misophonia has been referred to and discussed in the scientific literature for quite a while and moreover is a generally recognized term particularly by the individuals at NIH to whom you are appealing for research funding.That said, I believe that you are far more likely to be successful in your efforts for more research funding if you seek that funding because misophonia is far more common than previously appreciated than if you seek it specifically for 4S, a condition that still to this date not been formally recognized (i.e., the term has not appeared in the juried scientific literature.)Just my $0.02.smn

[Guest guest]

Relevant, but false. The term was conceived by Jacqui Sheldrake's

father-in-law, who is a professor of linquistics in Cambridge (UK), to

describe a group of patients who had an aversion to sound that was not

specifically due to its loudness.

smn

>

> Just out of curiosity, not that I want to kill the cat or start a long

arduous

> debate, but I heard this rumor that the Jastreboffs at first called

this

> aversive response when associated with T and H, phonophobia, but

because their

> patients did not like being labeled as phobic, they started using the

term

> misophonia instead. True, false? irrelevant?

>