Re: Passing the Torch on the Hyperacusis Network

[Guest guest]

Why don't we simply create a new network, that covers hyperacusis, misophonia and 4S? People will come to where they feel they are supported, and eventually those who would not support them will be completely sidelined.

 

I am extremely disappointed in their blind actions, their closed minded attitude, it has and always will be detrimental to growth and support and it will only confine and cause serious harm.I can understand your frustration and anger. I share it.

You have done a tremendous amount of work for people with 4s and you don't have to fight this on your own. I will support you, I will help and stand by you.They may be three but we are over a thousand and growing.

In time, you will be heard and accepted by science and I believe that day is soon. We can all add to your voice and create a message tat can't be turned away.Attitude like that only strengthens my resolve to get a message out there.

So sorry Dr JSent from my BlackBerry® smartphone on 3

Sender: Soundsensitivity

Date: Wed, 11 Aug 2010 03:27:36 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity

Subject: Passing the Torch on the Hyperacusis Network

 

Dear members: I have spent nearly a decade on the Hyperacusis Network, I believe, trying to foster knowledge about hyperacusis, and along the way, Selective Sound Sensitivity.

I believe in your situations and your symptoms. I have had hundreds of conversations, interviews, assessments, and phone calls with people who have this problem.

I have accumulated data on 4S and stated again and again, to the best of my knowledge, why I believe this to be different than misophonia and why I believe that the single treatment for misophonia, i.e., 3 week cycles of pleasant music, does not work for 4S, because it is of a different origin.

Many of you are members there and surely have observed the debate over 4S and misophonia. Despite profesional courtesy (I am not asking them to drop their definitions or opinions) and despite repeated attempts to discover how a funeral director and an engineer might know about these specific areas of auditory science, I have been subjected to behaviors that I have finally exhausted patience with....

Today the H Board announced that using the term 4S is banned and forbidden. This is the 2nd time that this has come about and I must guess that the thinking is that by forbidding it, it (you all) will go away. Or perhaps that you will believe you have misophonia and you will try the 3 week music thingy.

Or you will buy into the engineer's ideas and believe that you can be 'chatted' out of your symptoms, somehow.....

I don't know anymore. There is a little fascist gang there now, three of them who double and triple team anyone who does not agree with their opinions, and they slice your ham strings and rip open your bely, and cripple the efforts of people trying to communicate and support.

So I just can't take it anymore. After all these years, I quit.

I quit THAT board and I am not going back. There is no other professional on that board who has spent 13 years directly working with patients with H, T, 4S, and misophonia not to mention phonophobia and more. I guess they don't need or want what I have to offer, and after all it is a free country.

Censorship is an ugly thing. It is not accepted in most legal courts in this great country of ours, we value free speech to its full extent, even to our own detriment sometimes, because it is a rare and precious commodity in the world.....

Free speech has been clipped on the H. Network today. I feel sorry for all the people who will visit there due to all the google citings, and who will find little.

It is a very sad day for 4S in this strange electronic world. I hope the new website really kicks off, you as volunteer members of this group, run it and make it free and open to those who suffer from these symptoms.

I believe once day my point of view will be validated by science.

Marsha , AuD