American Tinnitus Association's Board Chair on NBC TODAY: Is This the Right Message to Send Out?

[Ed209]

At a time where it seems we have the world's ear regarding tinnitus, is it wise to send out this message?

Wouldn't it be better to take the spotlight by raising public awareness of what this condition can do to people, and how badly we need an effective treatment option?

Maybe they could have set up a campaign to allow people to donate towards curative research by using the movie as a vehicle to promote it?

I think at the very least they could have advised people to use earplugs in loud environments, such as at gigs (especially since this is part of the movie). Really make it clear that continually exposing your ears to gig noise can make it a lot worse.

To me, the message reads like tinnitus is no big deal, and this is coming from the board chair of the ATA. There is some truth to what's being said, but I fail to see how this helps the more extreme sufferers, who let's face it, need help the most. I would agree with them that most people habituate over time, but that's still not everyone so it's not good enough, in my humble opinion. I had to quit my music career - which was life changing - so don't take my habituation lightly. I try to give back because of how much this condition took from me, and I want everyone who is still suffering to see an effective treatment one day.

You can read the full story here:

https://www.today.com/health/what-tinnitus-symptoms-causes-treatment-ringing-ear-t141043

What are your thoughts? Do you think this story could help settle people who currently have debilitating tinnitus, or do you think it could potentially hinder progress towards a cure, or even undermine how bad this condition can be?

By the way, I'm not anti ATA, or out to bash people here. I'm just curious on your thoughts about how we should get the tinnitus message out there.

 

[Kste Adams]

I can understand them wanting to reassure new patients, but I think this kind of a message discourages potential researchers or investors - why put your time and money into a condition that mostly resolves itself? And I'm not sure that I believe them. I think what happens is that the majority of folks figure out how to live with the condition and they stop bugging their doctors about it, allowing the doctors to believe that their patients' symptoms are fading away.

 

[Deamon22]

Another missed opportunity. Sure, you can write that in many cases it MAY get better, but why let such a chance pass without raising more awareness that there is NO real treatment which is desperately needed. That really doesn't seem like the smartest move.

 

[TheDanishGirl]

I don't believe for one second that the natural course of tinnitus is NOT to get worse over time. It is evident when you hear the many stories from people with tinnitus, that it progressively gets worse over time. For some it is a very very slow worsening, for others it is fast.

A message that it gets better is just an excuse not to take this condition more seriously.

 

[Deamon22]

I don't believe for one second that the natural course of tinnitus is NOT to get worse over time. It is evident when you hear the many stories from people with tinnitus, that it progressively gets worse over time. For some it is a very very slow worsening, for others it is fast.

A message that it gets better is just an excuse not to take this condition more seriously.

You also have to remember that people whose tinnitus gets better rarely will come back to tell that to the world. So of course a lot more people whose tinnitus did not get better will follow the ATA and also this forum. Just to put this into perspective.

However, I agree that this was absolutely a wasted chance and a wrong message to send out.

 

[Ed209]

Another missed opportunity. Sure, you can write that in many cases it MAY get better, but why let such a chance pass without raising more awareness that there is NO real treatment which is desperately needed. That really doesn't seem like the smartest move.

That's what I thought. I can see how it's beneficial to reassure sufferers in a support group setting, but when you've got an audience like this, it's an opportunity to educate people on the darkest side of tinnitus. This could have included a message about using earplugs to protect ones hearing at gigs and clubs, as prevention is key to stopping one acquiring debilitating tinnitus in the first place. The article I read would not encourage me to do so. Furthermore, if I knew nothing about tinnitus, I would come away from that article believing the movie inaccurately portrayed it (typical Hollywood, I'd think).

I can see things from the perspective of LaGuinn Sherlock, but I believe she has missed a great opportunity to raise awareness for prevention of the condition, and for public support regarding research.

 

[TheDanishGirl]

You also have to remember that people whose tinnitus gets better rarely will come back to tell that to the world. So of course a lot more people whose tinnitus did not get better will follow the ATA and also this forum. Just to put this into perspective.

However, I agree that this was absolutely a wasted chance and a wrong message to send out.

But still. We don't know that people get better if they do not tell us they are/have. The many people who are quiet about their tinnitus, could just as well experience worsening. We just assume they get better, to make ourselves calm down, but that does not mean it is the truth.

 

[Deamon22]

@Ed209, absolutely correct. If I knew nothing about tinnitus, after reading I would think like I did before after a club that "it will just pass". I also wouldn't use earplugs. So no idea why they were thinking this was a good idea. And I am all for a balanced statement, but this seems so unnecessarily positive that I am really wondering. However I see they are getting backlash in the comments.

@TheDanishGirl, yea sure, that's why I also said MAY get better, however a forum for sufferers will always be full with people who are not getting better at the moment. And let's be honest, most people who are getting better don't give a crap anymore for the people who don't.

 

[Ed209]

I don't care if we could hypothetically prove, beyond a shadow of a doubt, that 90% habituate. That would still leave too many suffering. At what point do we no longer care about the people who become severely depressed or commit suicide?

I believe a better approach would be to turn tinnitus into a spectrum disorder, like autism. This would show how very different it can be from one person to another and would give better opportunities to help people with milder cases (in terms of suffering), whilst simultaneously helping the more severe sufferers without insulting them.

 

[jay777]

I don't care if we could hypothetically prove, beyond a shadow of a doubt, that 90% habituate

They told me 99% habituate.

 

[Deamon22]

@Ed209 Spot on. I hope they send out another statement or something and provide a more balanced view and explain, why we urgently need a treatement.

 

[david c]

This is very similar to the message that the BTA is sending out - as we saw in the recent Times article - the only reason tinnitus may be awful is because of a psychological reaction to the sound which can be treated with CBT and mindfulness. The message is extremely convenient for those therapists who profit from selling these types of therapies of course, but it sells short the many thousands of sufferers of severe tinnitus.

 

[TuxedoCat]

Hi. See you found the ATA post. I am a strong person, always been the rock in my family, but this makes me want to cry.

All they had to do was include the fact that for a significant number of people the condition becomes chronic and some struggle, there is no cure and one is needed.

It really makes me realize the difference among BTA, Tinnitus Hub and ATA.

BTA and Tinnitus Hub listen to and take feedback from the tinnitus community, there is no easy avenue for that with ATA.

I ate 2 bowls of ice cream, any more frustration like this and I'll be packing on the pounds. Thanks for listening, TC

 

[Allan1967]

On the American Tinnitus Association's Facebook page they have published a post stating their Board Chair told NBC Today that tinnitus fades in time.

The man has just done us all a massive disservice.

Now I'm not suggesting you go to the ATA's Facebook page and inform them that what he said was highly damaging, reckless and did nothing to serve our cause, but I wouldn't complain if you did.

 

[TuxedoCat]

Now I'm not suggesting you go to the ATA's Facebook page and inform them that what he said was highly damaging, reckless and did nothing to serve our cause, but I wouldn't complain if you did.

Hi Allan, Thanks for starting that off on the ATA site. I said my piece there. I hope they get it right next time. What a bunch of turkeys (means stupid birds in American English). -TC

 

[Ed209]

Hi. See you found the ATA post. I am a strong person, always been the rock in my family, but this makes me want to cry. All they had to do was include the fact that for a significant number of people the condition becomes chronic and some struggle, there is no cure and one is needed. It really makes me realize the difference among BTA, Tinnitus Hub and ATA. BTA and TH listen to and take feedback from the tinnitus community, there is no easy avenue for that with ATA. I ate 2 bowls of ice cream, any more frustration like this and I'll be packing on the pounds. Thanks for listening, TC

I personally found it to be a huge lost opportunity, and believe they could have done a lot more. Maybe the reporting of her words was twisted into a certain narrative? The press aren't the best for representing what people say at the best of times. However, in this instance, it's more than likely that's how she portrayed the condition to the reporters, which is a big shame.

 

[TuxedoCat]

I personally found it to be a huge, lost opportunity and believe they could have done a lot more. Maybe the reporting of her words was twisted into a certain narrative? The press aren't the best for representing what people say at the best of times. However, in this instance, it's more than likely how she portrayed the condition to the reporters.

And what did they say to Lady Gaga and Bradley Cooper? Gee, we'd like your help but for most people tinnitus fades away. So yeah, just think about it, no hurray. Tinnitus has been around since the time of Egyptians we can wait a few more thousands of years for a cure.

Sorry, the cynicism is creeping in.

 

[Ed209]

All they had to do was include the fact that for a significant number of people the condition becomes chronic and some struggle, there is no cure and one is needed.

Exactly this. I can't figure out why this wasn't the case. If you want the producers of A Star is Born to get involved somehow, then don't tell the world that it's no big deal off the back of their movie. Take the opportunity and run with it. Let everyone know what it has done to people's lives.

 

[kmohoruk]

I agree with all the above posts (I don't want to just repeat what has been said).

I saw that NCB TODAY post on the ATA's own Facebook page. The sad part is, this movie is actually creating the most buzz around tinnitus and has pushed the topic into the main stream. Many people have commented on the story on the ATA's Facebook page and have told the ATA that they are:

- Saddened and frustrated by the statement that the head of the board gave
- That they are going to stop funding the ATA if this is how they do PR
- That many people suffer in silence, and that the ol' "98% of people with tinnitus that habituate" stat is very incorrect.

I think what we can do as a large forum like this, is to maturely (as hard as it may be, don't just get angry) write to the ATA through Facebook or comment on the story and give feedback and say that this is NOT the message that you should be giving. I understand that's a nice line for people who have recently gotten tinnitus, but they need to push for further research, talk about protecting your ears when you go to clubs or gigs etc...

On a side note. I do find it interesting that the Tinnitus Hub Facebook page has approx 10,000 likes with a large amount of those people following the organization. While the ATA has only 1,100 people following them. So I think in general, they really need to step up their PR game, and work with other organizations and the media. I know that's often an issue that a lot of non-profits have - trying to find traction with a general audience.

Like @Ed209 said, I'm not anti-ATA. I just think they need to re-tool their message.

 

[Rajin]

If there was a treatment, there would be no ATA. So try to make it look like tinnitus is not such a big deal. The more people get it, probably the better for them. They don't care, a bunch of actors.

 

[Ed209]

The ATA have just responded to the criticism on their Facebook page.

 

[Starthrower]

At what point do we no longer care about the people who become severely depressed or commit suicide?

This is quite evident @Ed209. The answer is simple. Stop supporting this organization. It has already faded into almost nothing on the "it matters" scale. And this has been going on for a long time. And guess what? It is NOT going to change. It is sad because back in 2003 or so the organization was so strong and ran with heart and soul from the former staff members. When I recently reported a serious incident that happened to me - I was ignored. And I gave my life to that place back then.

How many of you listened to this from @David representing the BTA?

The link to the segment in the Good Morning Britain!

@David comes across with a lot of heart instead of egotism. It was a good balanced interview.

 

[Starthrower]

The ATA have just responded to the criticism on their Facebook page.

View attachment 23816

Blah blah blah blah. That is a bunch of nothing. Stand up. Speak out.

 

[Ed209]

Blah blah blah blah. That is a bunch of nothing. Stand up. Speak out.

I agree. It's really weak.

 

[TuxedoCat]

On a side note. I do find it interesting that the Tinnitus Hub Facebook page has approx 10,000 likes with a large amount of those people following the organization. While the ATA has only 1,100 people following them. So I think in general, they really need to step up their PR game, and work with other organizations and the media. I know that's often an issue that a lot of non-profits have - trying to find traction with a general audience.

Well I hope they get the message straight before they roll out any PR. As far as I know, they don't talk to those of us with tinnitus.

I've IM'd them from their Facebook page with questions, sometimes I get an answer but usually I have to ask twice.

They need to be more accessible and they need to reach out. David Stockdale comes on Tinnitus Talk periodically

Maybe LaGuinn Sherlock and Torryn Brazell should get themselves on Tinnitus Talk, schedule some time once in a while and take heed.

@Markku @Steve @Hazel - What do you think? Are the issues that different for BTA, ATA and Tinnitus Hub?

 

[Autumnly]

Everything has already been said that I want to say. I just can not for dear life understand how the ATA Board Chair could mess up such a great opportunity. And to think that they just recently posted about Daniel.

 

[Starthrower]

I ate 2 bowls of ice cream, any more frustration like this and I'll be packing on the pounds. Thanks for listening, TC

Sorry, the cynicism is creeping in.

@TuxedoCat seems that you and I both feel the same way. Reading that irked me to the limit. And I am already irked with other life stuff. I don't need any more irk.

Seriously those remarks made by the ATA Chair? Now they claim words were taken out of context? Please.

 

[glynis]

Does the Chair of ATA have severe bilateral tinnitus? I don't think so...
What a total plank!!!

love glynis

 

[TuxedoCat]

@Starthrower

I'm ever so glad to see you here. Alright, I have to go over to that Facebook page - I have more to say. Better that than a 3rd bowl of ice cream.

 

[david c]

I guess at least they allow criticism on their Facebook page - the BTA will just delete any comment that criticises them -- I know which approach I prefer.