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

[Guest guest]

Oh, I thought you meant Dan. Just ignore my other post then. I do think we should all contact Dr. Brewer again in mass, and ask her what is going on and emphasize again how we are suffering with this condition. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Wednesday, February 09, 2011 8:54 AMTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL 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]

Oh, I thought you meant Dan. Just ignore my other post then. I do think we should all contact Dr. Brewer again in mass, and ask her what is going on and emphasize again how we are suffering with this condition. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Wednesday, February 09, 2011 8:54 AMTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL 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]

Oh, I thought you meant Dan. Just ignore my other post then. I do think we should all contact Dr. Brewer again in mass, and ask her what is going on and emphasize again how we are suffering with this condition. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Wednesday, February 09, 2011 8:54 AMTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL 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]

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. HeidiSent from my iPhone

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]

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. HeidiSent from my iPhone

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]

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. HeidiSent from my iPhone

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]

Thanks, Marsha. I just don’t understand why they would care so much if we got researched or not. Plus, there are so many bogus Wikipedia articles/info that I can’t believe they were really so adamant about pulling ours. It is very frustrating and depressing. But thank goodness we do have this group and we will get recognized eventually! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Wednesday, February 09, 2011 11:00 AMTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL 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]

Thanks, Marsha. I just don’t understand why they would care so much if we got researched or not. Plus, there are so many bogus Wikipedia articles/info that I can’t believe they were really so adamant about pulling ours. It is very frustrating and depressing. But thank goodness we do have this group and we will get recognized eventually! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Wednesday, February 09, 2011 11:00 AMTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL 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]

Thanks, Marsha. I just don’t understand why they would care so much if we got researched or not. Plus, there are so many bogus Wikipedia articles/info that I can’t believe they were really so adamant about pulling ours. It is very frustrating and depressing. But thank goodness we do have this group and we will get recognized eventually! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Wednesday, February 09, 2011 11:00 AMTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL 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]

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. 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]

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]

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]

Agreed. Looks like the publicity project we planned many months ago has begun.Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Thu, 10 Feb 2011 02:32:15 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL Right.So now that you know where the potholes are, time to focus on achievingyour goals. And avoiding the potholes.smn>> I remember when the debate on the H network was going on. When theyheard we were in talks with the NIH and that they actually showedinterest in us, someone there did proclaim that they would indeedcontact the NIH and tell them that it was Misophonia that we all had andnot 4S. I swear that was Dan.

[Guest guest]

Agreed. Looks like the publicity project we planned many months ago has begun.Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Thu, 10 Feb 2011 02:32:15 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL Right.So now that you know where the potholes are, time to focus on achievingyour goals. And avoiding the potholes.smn>> I remember when the debate on the H network was going on. When theyheard we were in talks with the NIH and that they actually showedinterest in us, someone there did proclaim that they would indeedcontact the NIH and tell them that it was Misophonia that we all had andnot 4S. I swear that was Dan.

[Guest guest]

Agreed. Looks like the publicity project we planned many months ago has begun.Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Thu, 10 Feb 2011 02:32:15 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL Right.So now that you know where the potholes are, time to focus on achievingyour goals. And avoiding the potholes.smn>> I remember when the debate on the H network was going on. When theyheard we were in talks with the NIH and that they actually showedinterest in us, someone there did proclaim that they would indeedcontact the NIH and tell them that it was Misophonia that we all had andnot 4S. I swear that was Dan.

[Guest guest]

I just don’t understand why or how one individual could have the power to influence them to stop their interest in a research project. Unless it was someone who was very well known and prestigious, but I don’t think Dan or this Rob person is. Thanks for letting us know. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Wednesday, February 09, 2011 8:37 PMTo: Soundsensitivity Subject: Re: NIH Research Idea---was gum cracking MIL Kathy, as far as I know not a single audiologist was involved in theWikipedia and NIH incidents.smn--- In Soundsensitivity , " v_m_fen " wrote[in part]:> There is a political war going on among audiologists that has nothingto do with us and everything to do with their selfishness and egos.

[Guest guest]

Marsha, I appreciate you and this group you started. Support is so

important for us. I feel fortunate to have the support of my parents

as well. Took them a while to fully understand, but they seem to

care enough about me even through all the quirks and weirdness this

condition causes when I'm around them.

When I realized I wasn't alone with this condition, that helped to

eliminate some of the depression I had been feeling. Seeing a

therapist about this condition helped release a lot of the guilt I

felt as well. It's so easy to get discouraged, but I'm striving to

move forward today.

Thank you to everyone in this group. Knowing you all are out there

struggling like me (which I'm sorry is the case) I don't feel so

alone and isolated anymore. I have hope some kind of 'fix' will be

found for our condition, but I'm not relying on that anymore.

-Randall

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]

What is misophonia then? I'm feeling confused, lol.

-Randall

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]

Thanks Ian & smn for both your responses. I appreciate your

input and definitions. I'm all for letting Dr. name it and

have appreciated everything she has done, and if you are reading

this Dr. J, everything you have done!

I find I do not have a hatred of sounds, so then I'm not in the

Misophonia arena. I either find a sound very pleasing or find it

causes me pain and discomfort. The latter tends to be like an over

stimulation of the sound in my brain/ears, a distortion of sorts

that is difficult to deal with and endure. This is probably why some

sounds are extremely pleasing to me and others are absolutely not.

Many of the sounds I have a difficult time with are just average

every day sounds most people have no problem with. This makes

interacting with others in person difficult. And why I wear

headphones all the time. I rarely come across pleasing sounds and

when I do it's like I'm in heaven, with the rest of the time being

hell. The brown noise is one of those heavenly sounds.

I do suffer from Tinnitus as well. I have a constant high-pitched

tone and ringing in my ears that never stops. That is also very

difficult to deal with and makes falling asleep hard. The Sound

Generators help a lot with that when I am awake. Without them the

high-pitched sounds in my ears drive me crazy and make it hard to

concentrate.

Anyone else in this group similar?

-Randall

*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.

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

[Guest guest]

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?To: Soundsensitivity Sent: Fri, February 11, 2011 6:55:00 AMSubject: Re: NIH Research Idea---was gum cracking MIL

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.

> >

> >

>