A Call to Action

[Guest guest]

Hi Everyone,

I am new to this group so please forgive me if I am speaking out of

turn or if what I am about to suggest has already been tried. It is

great the NIH has expressed some interest in doing research. I'm not

sure how they work or the whole protocol in these matters. I will

apply for research participation for me and my son.

As painful as our condition is, you have to admit that is is very

interesting. It amazes me that each one of us has pretty much the

same quirky symptoms. It is such an outstanding example of how

complicated our brains are and who some kind of glitch can wreak havoc

in the weirdest ways.

I do believe the media as well as the medical community would be

fascinated by our condition and who it effects our lives. I suggest

that one one specific day (to be determined) every single one of us

show send an e-mail (with the same heading) to the NIH as well as some

top tier national media outlets (Oprah, Today Show, Good Morning

America, for example). I can forward everyone the direct e-mail

address for the health producers at each show. If someone is sitting

at their desk one day and gets 50 plus e-mails about the same unusual

undiagnosed syndrome - they will take notice. We should say that we

would be willing to be interviewed about this. It would also help to

have Dr. send an e-mail as well.

We need help. We need to get attention from as many medical

professionals as possible. Somebody, somewhere will figure this out -

we just need to get their attention. We need to make some noise (no

pun intended).

United we will be heard!

[Guest guest]

Amy,

The reason that the NIH has expressed interest in it is because we did bombard them with about 25 emails regarding this condition. We also sent emails to a doctor in CA at the House Ear Institute and he is interested in it, but he needs grant money. The NIH gets funding on their own (from our tax dollars--we deserve a cure--we pay enough in taxes!)

Many of us tried sending Oprah and Dr. Phil emails, but we didn't hear anything.

I think that the NIH is definitely going to study us, we just all need to apply. Once they have studied it, and hopefully have answers, I think that the TV shows will be more interested in it.

One of our members was actually on the Dr. Phil show talking about this problem and he gave her tapes to listen to that he said would "fix" her. I just don't think that it is a compelling show until we have answers. But once we do--I will do everything I can to get the word out for all those suffering with it.

I know in my heart that answers are on the horizon.

Thanks for applying--you and your son would be just what they want to study. Hopefully we'll get at least 50 people who apply.

Thanks for being so proactive. We are lucky to have so many smart and determined people on this site!

Kathy

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of amybbaronSent: Thursday, October 23, 2008 4:48 PMTo: Soundsensitivity Subject: A Call to Action

Hi Everyone,I am new to this group so please forgive me if I am speaking out ofturn or if what I am about to suggest has already been tried. It isgreat the NIH has expressed some interest in doing research. I'm notsure how they work or the whole protocol in these matters. I willapply for research participation for me and my son.As painful as our condition is, you have to admit that is is veryinteresting. It amazes me that each one of us has pretty much thesame quirky symptoms. It is such an outstanding example of howcomplicated our brains are and who some kind of glitch can wreak havocin the weirdest ways.I do believe the media as well as the medical community would befascinated by our condition and who it effects our lives. I suggestthat one one specific day (to be determined) every single one of usshow send an e-mail (with the same heading) to the NIH as well as sometop tier national media outlets (Oprah, Today Show, Good MorningAmerica, for example). I can forward everyone the direct e-mailaddress for the health producers at each show. If someone is sittingat their desk one day and gets 50 plus e-mails about the same unusualundiagnosed syndrome - they will take notice. We should say that wewould be willing to be interviewed about this. It would also help tohave Dr. send an e-mail as well.We need help. We need to get attention from as many medicalprofessionals as possible. Somebody, somewhere will figure this out -we just need to get their attention. We need to make some noise (nopun intended).United we will be heard!