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

[Steve G]

I can't believe these types of comments from major tinnitus associations about people they are meant to represent.

Why would any company invest research money into tinnitus if most people learn to live with it. Seriously.

Why do they down play it?

When they should be screaming out that people need help, people are committing suicide with this horrible condition.

 

[Jazzer]

"Once again the severity of tinnitus gets downplayed, and totally misrepresented by an organisation supposed to be representing and supporting this community of sufferers.
I despair!!!"

 

[Steve G]

"Once again the severity of tinnitus gets downplayed, and totally misrepresented by an organisation supposed to be representing and supporting this community of sufferers.
I despair!!!"

View attachment 23821

I'm just sitting here shaking my head in disbelief of these comments.

 

[Ed209]

There are more comments on this post than any other they've made in recent time. I think this says it all.

However, I wish the community would act with this much passion whenever a research campaign is put out there. We act very promptly when we see things that are not in our favour, but don't act with the same passion on the posts that seek to help us.

Just an observation.

 

[Jack Straw]

I'm triggered...

 

[TuxedoCat]

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.

Well, it will be interesting to see if ATA leaves the posts up.

I'm afraid I may have to differ with you in this instance, @david c.

David Stockdale did a good interview on Monday. I'd like to believe he may have taken on board some of the comments made here. -TC

 

[Jack Straw]

Well I will never give them any money seeing they take a perfect opportunity and throw it in the trash.

Anyone on Tinnitus Talk could have done a better job!

 

[Deamon22]

Well, it will be interesting to see if ATA leaves the posts up.

I'm afraid I may have to differ with you in this instance, @david c.

David Stockdale did a good interview on Monday. I'd do believe he may have taken on board, some of the comments made here. -TC

Agree. I mean how much time did he have to talk? One minute?

In this one minute he brought up clear, important statements without undermining the severe sufferer and emphasized two times the need for a cure.

So again, great job @David.

 

[MBH]

It's confusing on ATA's part, for them to act so under the table.

It's surprising they act so uninformed when they are the ones who should not be uninformed.

They basically offered no support for the reality of tinnitus.

If I supported them, I'd be messed up big time.

There are also a lot of variations of tinnitus that can crush your life to the ground.

Glad I found Tinnitus Talk.

 

[Ed209]

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.

I guess you were wrong. They have deleted the entire post.

 

[Agrajag364]

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.

Are you sure that's not just the people on forums - self selecting?

 

[TuxedoCat]

The ATA Facebook post regarding NBC TODAY's interview on tinnitus has been removed.

They have now posted the following update:

Though the ATA welcomes comments on posts, the discourse in the thread was becoming demeaning at times and included name calling which is not a core value of the ATA.

* We are all here to help each other, regardless of stage that you are currently living in with tinnitus.

* Some people with tinnitus have just begun their journey, while others have had a longer journey. Some have habituated while others have tried to achieve this for years. Some have used strategies that have worked to quiet their tinnitus, while others have used the same strategies with different results.

But most importantly, of the 50,000,000 million who have tinnitus in the US, 68% (16,000,000) describe it as bothersome. It is to the 34,000,000 people that the Today interview referred to -- that tinnitus in the majority of cases does fade or gradually disappear.

The ATA focuses almost all of our efforts helping those patients who are in crisis, who need strategies immediately to quiet their life, raising money for research, and helping others find a healthcare provider near their home.

The TODAY interview does not diminish that. But we do also need to educate and help the 34,000,000.

Torryn Brazell
Chief Executive Officer
American Tinnitus Association​

 

[Ed209]

Are you sure that's not just the people on forums - self selecting?

I don't think this really matters. I personally believe that most people improve with time, but there will be sacrifices in many cases that people won't get back. And more importantly, some continue to suffer horrendously and some commit suicide. For a major organisation to ignore that demographic is wrong, no matter what the percentage is. Either represent everyone or say nothing at all.

To the uninformed, that article put tinnitus on a parallel to something like a headache or similar. It didn't paint an accurate portrayal at all, in my opinion. It also served no real purpose to anyone. There was nothing mentioned about taking preventive measures, and there were no real life examples given of how badly some are effected which is the very democratic who need their help the most. The habituated folk are not likely to be reading their social media posts, so they don't need too much help anyway, but the one's who suffer a lot do and these are going to be the people who donate and who want to see forward momentum.

 

[TuxedoCat]

But most importantly, of the 50,000,000 million who have tinnitus in the US, 68% (16,000,000) describe it as bothersome. It is to the 34,000,000 people that the Today interview referred to -- that tinnitus in the majority of cases does fade or gradually disappear.

68% of 50,000,000 is 34,000,000. I hope they realize and fix.

This is from ATA's website:

Millions of Americans experience tinnitus, often to a debilitating degree, making it one of the most common health conditions in the country. The U.S. Centers for Disease Control estimates that nearly 15% of the general public — over 50 million Americans — experience some form of tinnitus. Roughly 20 million people struggle with burdensome chronic tinnitus, while 2 million have extreme and debilitating cases.​

If 50,000,000 have it and 22,000,000 have burdensome and chronic or debilitating tinnitus then 28,000,000 or 56% have a "mild" form.

 

[Starthrower]

They have deleted the entire post.

I am glad you put it here.

But we do also need to educate and help the 34,000,000.

Huh?? I thought the "quoted" 34,000,000 were the people whose tinnitus faded or went away with time? And so those are the ones that need education?

@TuxedoCat hand over the ice cream container please. I suppose we will be rather fat cats pretty soon.

 

[Ed209]

Well, they can't do math. 68% of 50,000,000 is 34,000,000. I hope they realize and fix.

It's been a PR disaster today from them. What an opportunity as well!

A Star Is Born really has raised the profile, but the ATA haven't done anyone any favours with that article. What's the point in having a Tinnitus Association if you tell the world that it will fade like it's no big deal to anyone?

 

[Manny]

They have now posted the following update:

Though the ATA welcomes comments on posts, the discourse in the thread was becoming demeaning at times and included name calling which is not a core value of the ATA.

TuxedoCat, thanks for posting.

Considering as there are people who are tortured by tinnitus to the point of suicide, the ATA needs to STFU with their prim concerns about "namecalling" and "core values", stop dodging and get down to business. It's not the time for obsessing over manners. It's a goddamn emergency.

The "core value" of a tinnitus organization should be its promotion of a cure. If they won't do that, they should close down. If they close down maybe the media would find an actual sufferer to talk to who wouldn't undermine the cause like the ATA just did.

 

[Starthrower]

The ATA focuses almost all of our efforts helping those patients who are in crisis, who need strategies immediately to quiet their life, raising money for research, and helping others find a healthcare provider near their home.

Really? So representing the ATA you said the majority of people with tinnitus find it simply fades away with time.
Just how does that help those of us who are not in that made up majority? This makes the tinnitus sufferer feel there is something wrong with him/her self because they still have tinnitus.

This just does not make any sense at all. It is like talking out of both sides of one's mouth and saying nothing.

 

[Ed209]

It's strange how it's gone from over 50 comments to just 3.

Are ATA moderating (deleting) people's comments since the response was posted?

 

[david c]

Oh well, another tinnitus association that doesn't like criticism. When the BTA launched a particularly useless campaign telling tinnitus sufferers it was up to them to get help from their GPs (as if we didn't know) - a couple of comments were made on Facebook suggesting that maybe they should be campaigning for tinnitus to get the same status and funding as other long-term health conditions - no surprise that they were deleted almost immediately.

They have now posted the following update:

Though the ATA welcomes comments on posts, the discourse in the thread was becoming demeaning at times and included name calling which is not a core value of the ATA.​

Interesting - I recognise this type of corporate language as a way of trying to silence criticism in both the BTA's Facebook page and in discussion about the BTA on here.

 

[Samantha R]

Wrong wrong wrong.

Tinnitus does not fade away or get better over time in the majority of cases.

How can it, particularly if it's related to hearing loss?

They have done a huge disservice to the people they are supposed to represent.

It's disgraceful, misleading and misrepresentation of the suffering of those with tinnitus - the very people they should be advocating for.

I asked them on their Facebook to clarify if this was habituation and they said 'no it actually gets quieter'.

 

[Greg Sacramento]

I agree with all the remarks per the ATA in this thread. We also need to seek more awareness within the medical community who are the medical caregivers and overseers of medical care practice. This would include the American Medical Association, other country origin medical associations, teaching medical schools, hospitals and doctors.

Otolaryngologist training includes a six volume medical reference for training and procedure. Tinnitus takes up just a few pages. I have posted the 45 page otolaryngologist tinnitus procedure guide. It would take two hours for a basic office exam. Instead they say 'here comes another' 'learn to live with it' or 'would you like some drugs'. Online there's ENT sites with thousands of postings by students and otolaryngologist which anyone can visit without registration. Very seldom, almost never is tinnitus mentioned and when it is, it's usually with bad light.

Medical students see a short film on tinnitus. To my knowledge the University of Michigan GP program is the only medical school that requires tinnitus condition cause class room education. Most neurologists and dentist know very little about the causes of tinnitus.

I recently posted an article where someone received severe tinnitus from a noise exposure. He was placed into the hospital for a week. He was given way more drugs than just prednisone thru IV. He received HBO treatment. After outpatient follow up, he no longer has tinnitus. Money talks.

 

[Ed209]

Wrong wrong wrong.

Tinnitus does not fade away or get better over time in the majority of cases.

How can it, particularly if it's related to hearing loss?

They have done a huge disservice to the people they are supposed to represent.

It's disgraceful, misleading and misrepresentation of the suffering of those with tinnitus - the very people they should be advocating for.

I asked them on their Facebook to clarify if this was habituation and they said 'no it actually gets quieter'.

A few of us made it clear to them in the comments how they had missed a golden opportunity to promote the cause and they deleted the entire post/thread.

I found the article quite bizarre. You will not gain public support by telling the world that it's no big deal. Why not bring up some significant case studies where it has wrecked people's lives? After all, this is the demographic that need their support the most.

People whose tinnitus has faded are not going to care about it all that much are they? So why make that the headline. It defies belief.

 

[lymebite]

In the United States, all charitable non-profit organizations must make their tax returns available.

For the ATA, in the most recent year posted - the year ending 30 June 2017 - total revenue for the year was $861,791.

How was this $861,791 spent? Three major program accomplishments are listed:

$130,258 - research grants
$278,227 - podcasts
$62,949 - expand the ATA magazine

Some of the functional line item expenses (full details in the PDF):

$309,014 - salaries
$106,901 - office expense
$40,584 - occupancy
$39,774 - travel

Running a charitable organization is complicated, but it seems discouraging that only $130,258 out of $861,791 went to research grants. And that roughly twice as much money went to podcasts as to research grants.

http://www.ata.org/sites/default/files/ATA 2016 990.pdf

 

[Jack Straw]

$130,258 - research grants
$278,227 - podcasts
$62,949 - expand the ATA Magainze

$278,000 for podcasts?! Is this real?!?!

 

[kmohoruk]

In the United States, all charitable non-profit organizations must make their tax returns available.

For the ATA, in the most recent year posted - the year ending 30 June 2017 - total revenue for the year was $861,791.

How was this $861,791 spent? Three major program accomplishments are listed:

$130,258 - research grants
$278,227 - podcasts
$62,949 - expand the ATA magazine

Some of the functional line item expenses (full details in the PDF):

$309,014 - salaries
$106,901 - office expense
$40,584 - occupancy
$39,774 - travel

Running a charitable organization is complicated, but it seems discouraging that only $130,258 out of $861,791 went to research grants. And that roughly twice as much money went to podcasts as to research grants.

http://www.ata.org/sites/default/files/ATA 2016 990.pdf

Wow, I didn't realize that low of a number only went to research grants. I remember looking this up a couple of years ago, and I didn't remember it being that low.

The number that I don't understand is how $278,227 went to podcasts!?

There are many podcasts that I listen to where they just use a couple of high quality mic's and the sound quality is amazing.

I mean this in the nicest way, but did they build a studio or something?

A couple of mic's and a student specializing in studio audio and that's all you need!

 

[Starthrower]

A few of us made it clear to them in the comments how they had missed a golden opportunity to promote the cause and they deleted the entire post/thread.

I don't have Facebook nor do I read it so I rely on the information here.

Exactly the point @Ed209.

@David from the BTA (see below quote) did such a precise job in so little time and I mentioned before well balanced. I hope everyone realizes this. What I appreciated the most was how he was so honest and spoke from the heart.

Then in a second of time in a highly public arena we are told for the majority of tinnitus sufferers... tinnitus just fades away.

I'm afraid I may have to differ with you in this instance, @david c.

David Stockdale did a good interview on Monday. I'd like to believe he may have taken on board some of the comments made here. -TC

 

[Greg Sacramento]

Over the years, the ATA has had many Otolaryngologists on their Board of Directors that serve three year terms.

Having that title probably helped with business with fast patient turnover.

Research seems to show just that from patient ratings.

 

[david c]

Wrong wrong wrong.

Tinnitus does not fade away or get better over time in the majority of cases.

How can it, particularly if it's related to hearing loss?

They have done a huge disservice to the people they are supposed to represent.

It's disgraceful, misleading and misrepresentation of the suffering of those with tinnitus - the very people they should be advocating for.

I asked them on their Facebook to clarify if this was habituation and they said 'no it actually gets quieter'.

Completely agree. Unfortunately, the BTA use exactly the same language - on their website about tinnitus - about tinnitus usually "fading away"

They also claim that for the great majority of people without tinnitus - "it does not affect them in any way". No evidence is given for this claim.

Maybe we are gradually realising that tinnitus associations sadly aren't our allies in our struggle to get tinnitus the recognition it deserves as a serious health condition.

 

[Samantha R]

Once again the severity of tinnitus gets downplayed, and totally misrepresented by an organisation supposed to be representing and supporting this community of sufferers.
I despair!!!"

Absolutely Dave. It's a blatant error to say that the majority of tinnitus fades or disappears. What evidence or research says this? I believe a lot of people habituate, and therefore it may feel as if things have quietened down, but I don't think that it actually has.

If there is a strong link between tinnitus and hearing loss then there is no way without a cure that tinnitus would just fade or disappear.

I asked them on their Facebook page to clarify if they meant habituation, but they said no actually fading or disappearing.

I asked 10 people I know who have tinnitus (including myself) - none have said it's faded, none have said it's disappeared, but they have gotten used to it.

I'm lost for words. Truly.

They had an opportunity to really push the message and push the cause but they failed miserably.

Incompetent idiots.

What makes me more angry is the Haar family who lost their son to suicide due to tinnitus & hyperacusis, raise funds for the ATA.

What a mockery it makes of their support. Michael's tinnitus drove him to suicide, it certainly didn't fade or disappear over the decades that he suffered.

My blood is boiling.