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

[Guest guest]

I think we should try again... our numbers have grown considerably since then.

Strength in numbers eh?

> >

> > 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]

Please, YES. I will support any drive for research..........................................

Tara Economakis, Dip.AdvHyp,(N-SHAP),MCRAH,UKCP

Telephone 01488-685151/ 686881

info@...

www.lastingchanges.co.uk

To: Soundsensitivity From: Oregon7@...Date: Wed, 9 Feb 2011 04:08:53 +0000Subject: 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

>

> 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]

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? We definitely need to have people write in again—we need to demand that we get research since we are taxpayers and they are federally funded. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Tuesday, February 08, 2011 11:09 PMTo: 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>> 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]

Not at all. Dan is a very sincere sweet guy. I have great respect for Dan

Malcore and I wish him every reward for fostering the H Network where so many

people find support and information. I voluntarily departed from the H network

after 10 years of volunteering there, I needed a break, it is hugely time

consuming and as well. I may return some day, who knows, Dan is good with me.

Professional differences of opinion exist when ideas are still floating around

in the 'maybe' world. That is an acceptable situation and actually I think a

very good one, as often it is a team effort that ferrets out, in the long run,

what is actually happening.

That is why we have this group, to help provide many points of perspective and

inquiry as well.

I do not know WHO contacted Dr. Brewer. It could have been many people or just

one. She is a scientist and a very good one and I think we should quietly and

repectfully continue to present ideas to her and the group there, who will

surely in the end, take this up or refer us to someone else, who will take us

up, and begin the process of figuring it all out.

Dr J

[Guest guest]

Who is this person that derailed our efforts and how does he have such clout that he could derail them? Plus, why would he care to? If it was Dan, why would they listen to him as some sort of expert? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Tuesday, February 08, 2011 11:09 PMTo: 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>> 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]

I am concerned also that he will foil our efforts if we try again.  I don’t get what’s in it for him! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Wednesday, February 09, 2011 4:09 PMTo: Soundsensitivity Subject: Re: Re: NIH Research Idea---was gum cracking MIL I'm not worried about him. But if he has shut down our efforts in the past and will go so far as to change essays written by others etc., then yes, we must keep him in our sights. To ignore that fact would not be wise. I do not want to expend the energy and effort for him to go behind our backs to, say NIC, and derail it. This is basic advocacy, to keep those who want you to fail in your line of vision, and to not ignore him. Sent from my iPhone With all due respect, Heidi, you do not need a watchdog on anybody. Youneed identify your goal and seek it in a purposeful way. That goal istwo-fold - a community goal and a personal goal. The community goal isadvocacy (to increase awareness and to whatever extent possibleresearch). And the personal goal is for each of you do what isnecessary to facilitate your own healing ... so that however much your4S affects your life today, it will affect your life a little lesstomorrow. I personally don't see how Dan (or any other miscreant) fitsinto that formula. So I would simply not involve him in any aspect ofyour lives - community or personal. Worrying about what Dan. hisco-conspirator, or anybody else might try to do " next time around " justisn'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 finallyunderstand the back story and know whose been the problem.>> Dr. J if this is accurate then the cat is right, Dan needs to betreated as the enemy he is. And he's not sweet or sincere and clearlymust not be trusted. In politics and power you must know who youropponents are in order to defeat/combat them. The campaign we seek forresearch involves both politics and power, it just is, because researchinvolves the all mighty dollar.>> If we are to start up our campaign we need to have strategy to dealwith him as well as a strategy for our campaign. You must have a goodoffense and a better defenses in my opinion. We must be prepared todeflect the crap Dan has thrown at us (albeit behind our backs) in thepast.>> Please send me the ironical letter that got the NIH's attention as Iwould be more than happy to review it and make suggestions. We need awatchdog on Dan.> Heidi>> Sent from my iPhone

[Guest guest]

We are in a different situation now. Dr J has published articles, we have over 1500 members here and we have a public website he has no authority over. Time and hard work will allow the wiki page up and the dedication of this groups users will pave the way for future research.If we plan our moves correctly and ensure we have sufficient leverage and momentum at each step I think it will be very hard for us to get derailed again.RichSent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Wed, 9 Feb 2011 16:21:26 -0500To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: RE: Re: NIH Research Idea---was gum cracking MIL I am concerned also that he will foil our efforts if we try again.  I don’t get what’s in it for him! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Wednesday, February 09, 2011 4:09 PMTo: Soundsensitivity Subject: Re: Re: NIH Research Idea---was gum cracking MIL I'm not worried about him. But if he has shut down our efforts in the past and will go so far as to change essays written by others etc., then yes, we must keep him in our sights. To ignore that fact would not be wise. I do not want to expend the energy and effort for him to go behind our backs to, say NIC, and derail it. This is basic advocacy, to keep those who want you to fail in your line of vision, and to not ignore him. Sent from my iPhone With all due respect, Heidi, you do not need a watchdog on anybody. Youneed identify your goal and seek it in a purposeful way. That goal istwo-fold - a community goal and a personal goal. The community goal isadvocacy (to increase awareness and to whatever extent possibleresearch). And the personal goal is for each of you do what isnecessary to facilitate your own healing ... so that however much your4S affects your life today, it will affect your life a little lesstomorrow. I personally don't see how Dan (or any other miscreant) fitsinto that formula. So I would simply not involve him in any aspect ofyour lives - community or personal. Worrying about what Dan. hisco-conspirator, or anybody else might try to do " next time around " justisn'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 finallyunderstand the back story and know whose been the problem.>> Dr. J if this is accurate then the cat is right, Dan needs to betreated as the enemy he is. And he's not sweet or sincere and clearlymust not be trusted. In politics and power you must know who youropponents are in order to defeat/combat them. The campaign we seek forresearch involves both politics and power, it just is, because researchinvolves the all mighty dollar.>> If we are to start up our campaign we need to have strategy to dealwith him as well as a strategy for our campaign. You must have a goodoffense and a better defenses in my opinion. We must be prepared todeflect the crap Dan has thrown at us (albeit behind our backs) in thepast.>> Please send me the ironical letter that got the NIH's attention as Iwould be more than happy to review it and make suggestions. We need awatchdog on Dan.> Heidi>> Sent from my iPhone

[Guest guest]

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.To:

Soundsensitivity Sent: Wed, February 9, 2011 12:37:10 PMSubject: Re: NIH Research Idea---was gum cracking MIL

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]

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]

You’re right.  Let me know when you think you are ready.  Otherwise, everyone else needs to prepare their letters.  I’ll try to get addresses.  We can send paper letters (hopefully these will stand out more since so many people email instead these days), and also we can send emails.  We need a lot of people to participate—especially parents of sufferers, which will show how many children are dealing with it also. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of richard.t.mckenna@...Sent: Wednesday, February 09, 2011 5:24 PMTo: Sound sensitivitySubject: Re: Re: NIH Research Idea---was gum cracking MIL We are in a different situation now. Dr J has published articles, we have over 1500 members here and we have a public website he has no authority over. Time and hard work will allow the wiki page up and the dedication of this groups users will pave the way for future research.If we plan our moves correctly and ensure we have sufficient leverage and momentum at each step I think it will be very hard for us to get derailed again.RichSent from my BlackBerry® smartphone on 3 Sender: Soundsensitivity Date: Wed, 9 Feb 2011 16:21:26 -0500To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: RE: Re: NIH Research Idea---was gum cracking MIL I am concerned also that he will foil our efforts if we try again. I don’t get what’s in it for him! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Wednesday, February 09, 2011 4:09 PMTo: Soundsensitivity Subject: Re: Re: NIH Research Idea---was gum cracking MIL I'm not worried about him. But if he has shut down our efforts in the past and will go so far as to change essays written by others etc., then yes, we must keep him in our sights. To ignore that fact would not be wise. I do not want to expend the energy and effort for him to go behind our backs to, say NIC, and derail it. This is basic advocacy, to keep those who want you to fail in your line of vision, and to not ignore him. Sent from my iPhone With all due respect, Heidi, you do not need a watchdog on anybody. Youneed identify your goal and seek it in a purposeful way. That goal istwo-fold - a community goal and a personal goal. The community goal isadvocacy (to increase awareness and to whatever extent possibleresearch). And the personal goal is for each of you do what isnecessary to facilitate your own healing ... so that however much your4S affects your life today, it will affect your life a little lesstomorrow. I personally don't see how Dan (or any other miscreant) fitsinto that formula. So I would simply not involve him in any aspect ofyour lives - community or personal. Worrying about what Dan. hisco-conspirator, or anybody else might try to do " next time around " justisn'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 finallyunderstand the back story and know whose been the problem.>> Dr. J if this is accurate then the cat is right, Dan needs to betreated as the enemy he is. And he's not sweet or sincere and clearlymust not be trusted. In politics and power you must know who youropponents are in order to defeat/combat them. The campaign we seek forresearch involves both politics and power, it just is, because researchinvolves the all mighty dollar.>> If we are to start up our campaign we need to have strategy to dealwith him as well as a strategy for our campaign. You must have a goodoffense and a better defenses in my opinion. We must be prepared todeflect the crap Dan has thrown at us (albeit behind our backs) in thepast.>> Please send me the ironical letter that got the NIH's attention as Iwould be more than happy to review it and make suggestions. We need awatchdog on Dan.> Heidi>> Sent from my iPhone

[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]

I remember when the debate on the H network was going on. When they heard we

were in talks with the NIH and that they actually showed interest in us, someone

there did proclaim that they would indeed contact the NIH and tell them that it

was Misophonia that we all had and not 4S. I swear that was Dan.

> >

> > Not at all. Dan is a very sincere sweet guy ...

>

[Guest guest]

Rob does not strike as the type that reads philosophy in his spare time.And if the NIH is listening to the Robs and Dans of this world, then we are really in trouble.To: Soundsensitivity Sent: Wed, February 9, 2011 7:32:22 PMSubject: Re: NIH Research Idea---was gum cracking MIL

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]

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]

Right.

So now that you know where the potholes are, time to focus on achieving

your goals. And avoiding the potholes.

smn

>

> I remember when the debate on the H network was going on. When they

heard we were in talks with the NIH and that they actually showed

interest in us, someone there did proclaim that they would indeed

contact the NIH and tell them that it was Misophonia that we all had and

not 4S. I swear that was Dan.

[Guest guest]

Right.

So now that you know where the potholes are, time to focus on achieving

your goals. And avoiding the potholes.

smn

>

> I remember when the debate on the H network was going on. When they

heard we were in talks with the NIH and that they actually showed

interest in us, someone there did proclaim that they would indeed

contact the NIH and tell them that it was Misophonia that we all had and

not 4S. I swear that was Dan.

[Guest guest]

How about just plain 4S/Misophonia or Misophonia/4S?It is unfortunate that a nomenclature discussion even exists........................................

Tara Economakis, Dip.AdvHyp,(N-SHAP),MCRAH,UKCP

Telephone 01488-685151/ 686881

info@...

www.lastingchanges.co.uk

To: Soundsensitivity From: nagler@...Date: Fri, 11 Feb 2011 15:18:26 +0000Subject: Re: NIH Research Idea---was gum cracking MIL

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