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Re: What is being done?

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Research is just getting started at UC San Diego, under a world famous neuroscientist. The University of Amsterdam will be using brain scans and DNA testing to study misophonia.

I’d guess that publicizing our plight is the path to gaining research resources. Does anyone have experience getting the attention of researchers?

From: M M

Sent: Saturday, May 12, 2012 3:59 PM

To: Soundsensitivity

Subject: What is being done?

Does anyone know what is being done as far as researching treatments? Is there any lab research, controlled case studies, or trial testing being done? How do you tell a kid there is no hope?

Will anyone who is a leading advocate for this group tell us what is being done other than getting misophonia brought to the attention of the rest of the world?

I feel like a prisoner in this world.

M

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Thanks ...do you know how they find the volunteers to do the brain scans on for the study?  I'm curious how that all begins, and if they are accepting children.

 

M

Research is just getting started at UC San Diego, under a world famous neuroscientist.  The University of Amsterdam will be using brain scans and DNA testing to study misophonia.

 

I’d guess that publicizing our plight is the path to gaining research resources.  Does anyone have experience getting the attention of researchers?

 

 

From: M M

Sent: Saturday, May 12, 2012 3:59 PM

To: Soundsensitivity

Subject: What is being done?

 

 

Does anyone know what is being done as far as researching treatments?  Is there any lab research, controlled case studies, or trial testing being done?  How do you tell a kid there is no hope? 

 

Will anyone who is a leading advocate for this group tell us what is being done other than getting misophonia brought to the attention of the rest of the world?

I feel like a prisoner in this world.

 

M

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Alas, I do not know the details. I will share with the group if I find out.

I forgot to mention, in addition to UC San Diego and the University of Amsterdam, there is research being done at the University of Texas at Dallas.

From: M M

Sent: Saturday, May 12, 2012 5:28 PM

To: Soundsensitivity

Subject: Re: What is being done?

Thanks ...do you know how they find the volunteers to do the brain scans on for the study? I'm curious how that all begins, and if they are accepting children.

M

Research is just getting started at UC San Diego, under a world famous neuroscientist. The University of Amsterdam will be using brain scans and DNA testing to study misophonia.

I’d guess that publicizing our plight is the path to gaining research resources. Does anyone have experience getting the attention of researchers?

From: M M

Sent: Saturday, May 12, 2012 3:59 PM

To: Soundsensitivity

Subject: What is being done?

Does anyone know what is being done as far as researching treatments? Is there any lab research, controlled case studies, or trial testing being done? How do you tell a kid there is no hope?

Will anyone who is a leading advocate for this group tell us what is being done other than getting misophonia brought to the attention of the rest of the world?

I feel like a prisoner in this world.

M

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, are you sure about UT Dallas? WHO there is doing this research?

>

>

>

>

> Research is just getting started at UC San Diego, under a world famous

neuroscientist. The University of Amsterdam will be using brain scans and DNA

testing to study misophonia.

>

> I'd guess that publicizing our plight is the path to gaining research

resources. Does anyone have experience getting the attention of researchers?

>

>

>

> From: M M

> Sent: Saturday, May 12, 2012 3:59 PM

> To: Soundsensitivity

> Subject: What is being done?

>

>

>

> Does anyone know what is being done as far as researching treatments? Is

there any lab research, controlled case studies, or trial testing being done?

How do you tell a kid there is no hope?

>

> Will anyone who is a leading advocate for this group tell us what is being

done other than getting misophonia brought to the attention of the rest of the

world?

>

> I feel like a prisoner in this world.

>

> M

>

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Aage R. Møller, Ph.D. (D. Med. Sci.)

Professor of Cognition and Neuroscience

Cheers,

From: Peach

Sent: Saturday, May 12, 2012 9:13 PM

To: Soundsensitivity

Subject: Re: What is being done?

, are you sure about UT Dallas? WHO there is doing this research?> > > > > Research is just getting started at UC San Diego, under a world famous neuroscientist. The University of Amsterdam will be using brain scans and DNA testing to study misophonia.> > I'd guess that publicizing our plight is the path to gaining research resources. Does anyone have experience getting the attention of researchers?> > > > From: M M > Sent: Saturday, May 12, 2012 3:59 PM> To: mailto:Soundsensitivity%40yahoogroups.com > Subject: What is being done?> > > > Does anyone know what is being done as far as researching treatments? Is there any lab research, controlled case studies, or trial testing being done? How do you tell a kid there is no hope? > > Will anyone who is a leading advocate for this group tell us what is being done other than getting misophonia brought to the attention of the rest of the world?> > I feel like a prisoner in this world.> > M>

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, what is the source for this information? I do not believe it is correct.

Moller is speaking about miso at the TRI in Belgium next month but he researches

brain plasticity, and he believes miso is a hard-wired condition.

> >

> >

> >

> >

> > Research is just getting started at UC San Diego, under a world famous

neuroscientist. The University of Amsterdam will be using brain scans and DNA

testing to study misophonia.

> >

> > I'd guess that publicizing our plight is the path to gaining research

resources. Does anyone have experience getting the attention of researchers?

> >

> >

> >

> > From: M M

> > Sent: Saturday, May 12, 2012 3:59 PM

> > To: mailto:Soundsensitivity%40yahoogroups.com

> > Subject: What is being done?

> >

> >

> >

> > Does anyone know what is being done as far as researching treatments? Is

there any lab research, controlled case studies, or trial testing being done?

How do you tell a kid there is no hope?

> >

> > Will anyone who is a leading advocate for this group tell us what is being

done other than getting misophonia brought to the attention of the rest of the

world?

> >

> > I feel like a prisoner in this world.

> >

> > M

> >

>

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Well, he wrote a chapter about it for one of his books. I rechecked, and it was his “Textbook of Tinnitusâ€, and the chapter includes other topics. This does not imply research, so I stand corrected.

Cheers,

From: Peach

Sent: Saturday, May 12, 2012 10:41 PM

To: Soundsensitivity

Subject: Re: What is being done?

, what is the source for this information? I do not believe it is correct. Moller is speaking about miso at the TRI in Belgium next month but he researches brain plasticity, and he believes miso is a hard-wired condition. > > > > > > > > > > Research is just getting started at UC San Diego, under a world famous neuroscientist. The University of Amsterdam will be using brain scans and DNA testing to study misophonia.> > > > I'd guess that publicizing our plight is the path to gaining research resources. Does anyone have experience getting the attention of researchers?> > > > > > > > From: M M > > Sent: Saturday, May 12, 2012 3:59 PM> > To: mailto:Soundsensitivity%40yahoogroups.com > > Subject: What is being done?> > > > > > > > Does anyone know what is being done as far as researching treatments? Is there any lab research, controlled case studies, or trial testing being done? How do you tell a kid there is no hope? > > > > Will anyone who is a leading advocate for this group tell us what is being done other than getting misophonia brought to the attention of the rest of the world?> > > > I feel like a prisoner in this world.> > > > M> >>

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He is speaking about miso at the TRI conference in hopes that one of the hearing

researchers there will take an interest. Those researchers, however, are more

interested in tinnitus and such conditions that arise from excessive noise

exposure, so it's unclear what will ensue. I do think, however, that it is only

a matter of time before more research goes forward.

> > >

> > >

> > >

> > >

> > > Research is just getting started at UC San Diego, under a world famous

neuroscientist. The University of Amsterdam will be using brain scans and DNA

testing to study misophonia.

> > >

> > > I'd guess that publicizing our plight is the path to gaining research

resources. Does anyone have experience getting the attention of researchers?

> > >

> > >

> > >

> > > From: M M

> > > Sent: Saturday, May 12, 2012 3:59 PM

> > > To: mailto:Soundsensitivity%40yahoogroups.com

> > > Subject: What is being done?

> > >

> > >

> > >

> > > Does anyone know what is being done as far as researching treatments? Is

there any lab research, controlled case studies, or trial testing being done?

How do you tell a kid there is no hope?

> > >

> > > Will anyone who is a leading advocate for this group tell us what is being

done other than getting misophonia brought to the attention of the rest of the

world?

> > >

> > > I feel like a prisoner in this world.

> > >

> > > M

> > >

> >

>

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This is one of the reasons why we need to encourage misophonia research in other

fields like neuropsychology, as well as in the field of hearing impairment. If,

for argument sake, our misophonia is mostly an abnormal limbic system problem,

then it would really be an issue for neuroscience researchers.

At this stage I would want a multi-disciplinary approach: genetics, psychology,

audiology/otology, neurosciences - and even OT researchers who are looking at

adult sensory sensitivity (eg Temple University, if anyone has connections

there).

> > > >

> > > >

> > > >

> > > >

> > > > Research is just getting started at UC San Diego, under a world famous

neuroscientist. The University of Amsterdam will be using brain scans and DNA

testing to study misophonia.

> > > >

> > > > I'd guess that publicizing our plight is the path to gaining research

resources. Does anyone have experience getting the attention of researchers?

> > > >

> > > >

> > > >

> > > > From: M M

> > > > Sent: Saturday, May 12, 2012 3:59 PM

> > > > To: mailto:Soundsensitivity%40yahoogroups.com

> > > > Subject: What is being done?

> > > >

> > > >

> > > >

> > > > Does anyone know what is being done as far as researching treatments? Is

there any lab research, controlled case studies, or trial testing being done?

How do you tell a kid there is no hope?

> > > >

> > > > Will anyone who is a leading advocate for this group tell us what is

being done other than getting misophonia brought to the attention of the rest of

the world?

> > > >

> > > > I feel like a prisoner in this world.

> > > >

> > > > M

> > > >

> > >

> >

>

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When Dateline 20/20 has this on, perhaps that will get the attention of more researchers.  Does anyone have the date it will be aired?

 

M

This is one of the reasons why we need to encourage misophonia research in other fields like neuropsychology, as well as in the field of hearing impairment. If, for argument sake, our misophonia is mostly an abnormal limbic system problem, then it would really be an issue for neuroscience researchers.

At this stage I would want a multi-disciplinary approach: genetics, psychology, audiology/otology, neurosciences - and even OT researchers who are looking at adult sensory sensitivity (eg Temple University, if anyone has connections there).

> > > >> > > >> > > >

> > > >> > > > Research is just getting started at UC San Diego, under a world famous neuroscientist. The University of Amsterdam will be using brain scans and DNA testing to study misophonia.

> > > >> > > > I'd guess that publicizing our plight is the path to gaining research resources. Does anyone have experience getting the attention of researchers?> > > >> > > >

> > > >> > > > From: M M> > > > Sent: Saturday, May 12, 2012 3:59 PM> > > > To: mailto:Soundsensitivity%40yahoogroups.com

> > > > Subject: What is being done?> > > >> > > >> > > >> > > > Does anyone know what is being done as far as researching treatments? Is there any lab research, controlled case studies, or trial testing being done? How do you tell a kid there is no hope?

> > > >> > > > Will anyone who is a leading advocate for this group tell us what is being done other than getting misophonia brought to the attention of the rest of the world?> > > >

> > > > I feel like a prisoner in this world.> > > >> > > > M> > > >> > >> >>------------------------------------

PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE.ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.

Thank you.  MJ

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It is being aired this Friday night.

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > Research is just getting started at UC San Diego, under a world

> > famous neuroscientist. The University of Amsterdam will be using brain

> > scans and DNA testing to study misophonia.

> > > > > >

> > > > > > I'd guess that publicizing our plight is the path to gaining

> > research resources. Does anyone have experience getting the attention of

> > researchers?

> > > > > >

> > > > > >

> > > > > >

> > > > > > From: M M

> > > > > > Sent: Saturday, May 12, 2012 3:59 PM

> > > > > > To: mailto:Soundsensitivity%40yahoogroups.com

> > > > > > Subject: What is being done?

> > > > > >

> > > > > >

> > > > > >

> > > > > > Does anyone know what is being done as far as researching

> > treatments? Is there any lab research, controlled case studies, or trial

> > testing being done? How do you tell a kid there is no hope?

> > > > > >

> > > > > > Will anyone who is a leading advocate for this group tell us what

> > is being done other than getting misophonia brought to the attention of the

> > rest of the world?

> > > > > >

> > > > > > I feel like a prisoner in this world.

> > > > > >

> > > > > > M

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

> >

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

> >

> > PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE

> > TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR

> > REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE.

> >

> > ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.

> > Thank you. MJ

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