Re: Thank You Dr. J for all your time and effort.

[Guest guest]

We have been down a long road here....and it feels like this site is really akin

to Paradise compared to some of the places that have been very hostile and

dismissive....

Never mind.

All great deeds require some sacrifice.

I do believe this with all of my heart.

So, let bygones be bygones and we still move forward, with the good work.

I am sure some here still think I for some unknown reason, removed a thread.

All I can say is, no, that was not the case, at least not intentionally.

One person here is working hard to get Yahoo to put it back. Apparently this

may be possible!

Despite the bumps in the road, the journey is worthwhile. It would be

unbearable if the forces that fragmented our worthy endeavor, were to come from

within this group.....

Some of you may not realize I have a large personal interest in miso/4S, yes I

do, and this drives me even further in my work! I have a vested interest in

finding out why and what is going on in your brains and neurons and inter

related brain functions and amplifications.....what is going on in there!

Whatever it is, is not voluntary, that I know. I know no one would choose this

malady.

Marsha , AuD

[Guest guest]

Thank you for the excellent post explaining the history of this group. I learned a few things.I feel badly about the recent deletion incident and the NFB misunderstanding. I apologize for any hurtful comments I made. It was not my intention, I could have used more restraint. We owe a big debt of gratitude to Dr. J.I just want more than anything to find an answer for this crazy problem so this suffering will end for all of us. Nothing has ever looked so promising and in the past I have always been on my own trying to find a cure. This site has been such a blessing to me and given me hope when I was really running out of hope.MikeSent from my iPad

Thank you Dr. J also for the sharing what is being undertaken with the Misophonia Protocol you have been working on with other audiologists.

I have been a member here for a long time and I know that you have always been open to the discussion of alternative treatments.

I think it's great that people are trying NFB, but I also don't want this place to turn into an NFB forum.

To new members, about how we got here:

As a long time member having researched and participated in other groups in the hyperacusis world, I have become aware of the long history of what it has taken to get to where we are now, being finally recognized and taken seriously by "some" in the scientific community as a condition all of its own.

Dr. J has spent untold time and effort at this goal, while also having put up with attempts to discredit her by some with the opposing points of view, I could point you to a website where you could read for yourselves some examples of this in the archives, but due to all the editing and deleting of posts there, it is not easy to make sense of these debates (this was the place we first gathered by the way).

So having witnessed and also participated in the frustration of trying to make our case there, with the constant DELETION of posts and threads, I find it hard to fathom that Dr. J would engage in the similar censorship, when she has spoken out against censorship so often.

Dr. J provided us to have a safe place to gather here in a private setting away from all that discounting of what we have to live with with misophonia. I want this to remain a safe place of support and mutual respect.

If it weren't for Dr. J we would likely at this point still be out there alone, thinking we are the only one who is crazy and 4s/misophonia would likely still not be taken seriously or known.

I think it's great that people are having positive results with NFB, I hope it continues and happens for others. But like it or not, among the scientific community those few reports, hopeful as they sound, would be considered anecdotal evidence. (this is not a criticism or meant to discount these good results, I am just stating a fact) I don't have time to engage in debates about NFB right now, which I have not done the research on, so am not trying to start one here.

When I first joined 4 or 5 years ago, the NIH was seriously considering a study of our condition and Dr. J was very excited about that and involved. That is obviously not going to happen at this point, which was very disappointing. That is why I don't immediately jump with joy when I hear unofficially that a neurological study is being considered.

By the way, due to what I have seen in the past, I think it is quite possible that the NIH study was derailed by the same long time negative influences on a witch hunt, whom I also suspect torpedoed our wikipedia page in the past and shared private posts outside the group, and left demeaning remarks about Dr. J and us all over the internet. I could even believe that hacking websites wouldn't be beyond the scope.

After all that has occurred in the past outside this group, I am really bothered by what has been going on within the group with the NBF debate.

It also bothers me that new members may be getting the impression that Dr. J is out to suppress forward progress, and that we need sticking up for here. I am very sad to see that, she deserves to be thought of with respect, especially here. A separate group for those trying NFB is a not a bad idea, I imagine there are a lot of technical details to be discussed and figured out with the practitioners.

=

[Guest guest]

-You said exactly what I was thinking, and you said it extremely well.If not for this group, the last few years would have been very different, and not in a good way, for me and my 18-year-old daughter.  I also think she would be a different person today, had we not been so fortunate as to find this group.  Because of this group, she is able to recognize what is happening when sounds or actions trigger her, and remove herself from the situation, or at least have some comprehension of what is happening to her. (I have also learned to pay attention to my own actions, and even to occasionally tuck some ear plugs into her hand as she heads out the door to some fun group gathering with friends.)

Thank you for taking the time, and for posting in a mature and thoughtful way.Sincerely,Bette

 

Thank you Dr. J also for the sharing what is being undertaken with the Misophonia Protocol you have been working on with other audiologists.

I have been a member here for a long time and I know that you have always been open to the discussion of alternative treatments.

I think it's great that people are trying NFB, but I also don't want this place to turn into an NFB forum.

To new members, about how we got here:

As a long time member having researched and participated in other groups in the hyperacusis world, I have become aware of the long history of what it has taken to get to where we are now, being finally recognized and taken seriously by " some " in the scientific community as a condition all of its own.

Dr. J has spent untold time and effort at this goal, while also having put up with attempts to discredit her by some with the opposing points of view, I could point you to a website where you could read for yourselves some examples of this in the archives, but due to all the editing and deleting of posts there, it is not easy to make sense of these debates (this was the place we first gathered by the way).

So having witnessed and also participated in the frustration of trying to make our case there, with the constant DELETION of posts and threads, I find it hard to fathom that Dr. J would engage in the similar censorship, when she has spoken out against censorship so often.

Dr. J provided us to have a safe place to gather here in a private setting away from all that discounting of what we have to live with with misophonia. I want this to remain a safe place of support and mutual respect.

If it weren't for Dr. J we would likely at this point still be out there alone, thinking we are the only one who is crazy and 4s/misophonia would likely still not be taken seriously or known.

I think it's great that people are having positive results with NFB, I hope it continues and happens for others. But like it or not, among the scientific community those few reports, hopeful as they sound, would be considered anecdotal evidence. (this is not a criticism or meant to discount these good results, I am just stating a fact) I don't have time to engage in debates about NFB right now, which I have not done the research on, so am not trying to start one here.

When I first joined 4 or 5 years ago, the NIH was seriously considering a study of our condition and Dr. J was very excited about that and involved. That is obviously not going to happen at this point, which was very disappointing. That is why I don't immediately jump with joy when I hear unofficially that a neurological study is being considered.

By the way, due to what I have seen in the past, I think it is quite possible that the NIH study was derailed by the same long time negative influences on a witch hunt, whom I also suspect torpedoed our wikipedia page in the past and shared private posts outside the group, and left demeaning remarks about Dr. J and us all over the internet. I could even believe that hacking websites wouldn't be beyond the scope.

After all that has occurred in the past outside this group, I am really bothered by what has been going on within the group with the NBF debate.

It also bothers me that new members may be getting the impression that Dr. J is out to suppress forward progress, and that we need sticking up for here. I am very sad to see that, she deserves to be thought of with respect, especially here. A separate group for those trying NFB is a not a bad idea, I imagine there are a lot of technical details to be discussed and figured out with the practitioners.