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

[Samantha R]

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.

Yes Ed... spot on.
I cannot believe they did this. What an incompetent organisation.
It's just so blatantly inaccurate to say that tinnitus actually fades or disappears in time.
Do they actually believe this? If so, this organisation is redundant. They have no idea about this condition.
Who's going to donate to tinnitus research if it fades or disappears for the majority of people? There's no need for a cure because it resolves in time.

I did ask on their subsequent post to confirm if they meant habituation or actually reduction in volume, they said -

"No. literally, for the majority it fades away or leaves entirely. What you're describing is habitation."​

Then I said -

"American Tinnitus Association thank you for the response. How does this happen if there is a strong connection between tinnitus and hearing loss but we can't cure hearing loss?"​

They responded -

"It begs the question doesn't it? It is extremely frustrating - and researchers have been trying to answer just this question. As I tell those with tinnitus all the time, please put me out of business - make my job irrelevant - and the sooner researchers can get to the bottom of this, the better. It is so complicated."​

Goodness me....

I think Torryn made his own job irrelevant by the way this whole thing was handled. Needs to be sacked in my opinion.

 

[kmohoruk]

I'll leave it at this - because even after this, I'm still not fully agansit the ATA. They do provide some services that help people, and offer grants for research, and that's still an important fact to remember.

However, if we really WANT research to be funded, then we need to do it ourselves. I think for the time being, people who I've recommended to donate to the ATA, I'm now going to suggest particular research funding opportunities for them to donate directly to instead. I would suggest you do the same.

It's a little more research (but hey, that's why we have this forum! ), but why not have 100% of your money go to research...and not...16%...I believe what I roughly calculated earlier.

I think the over a quarter of a million dollars going to "podcasts" is what did it for me.

But on the positive note, I think this has woken up a lot of people to the fact that if we want better treatments, then we need to do the research and show this passion and fund it (I believe @Ed209 said this earlier) and encourage our friends and loved ones to do the same. PERIOD!

 

[attheedgeofscience]

What evidence or research says this?

Back in 2016, there was a post shared on the BTA's website (which is no longer available) but here is what it would have looked like:

The study that was referred to was not published at the time, but it is now (see below) – with the important bit highlighted for you...

 

[Samantha R]

@attheedgeofscience,

Thank you for that.

I interpret this study as referring to 'habituation', not to the tinnitus actually objectively decreasing in volume. It's ambiguous though.

Our reactions to the sound might change, but my opinion is that in a large number of cases that the volume doesn't.

 

[Ed209]

Back in 2016, there was a post shared on the BTA's website (which is no longer available) but here is what it would have looked like:

View attachment 23836

The study that was referred to was not published at the time, but it is now (see below) – with the important bit highlighted for you...

View attachment 23835

I believe it does get better for most people and have always said that, but I fail to see how this helps those who are still struggling years down the line.

The ATA could have quite clearly stated that the evidence shows for many people it improves, but for some, it can be life limiting and debilitating to the point that they either end their lives or constantly contemplate it. They could have stated that we need more money going into curative research for exactly this reason; because these people need more help. They could also have given some preventative advice. The article I read served no purpose at all.

They only told the good side and showed zero of the bad, and for me that does not accurately portray the condition across the entire spectrum. They had a golden opportunity to send out a message that could have represented the worst sufferers as well, and they chose not to, so they blew it in my opinion.

 

[Samantha R]

I believe it does get better for most people and have always said that, but I fail to see how this helps those who are still struggling years down the line.

Do you believe largely through habituation or an actual reduction in volume?

 

[attheedgeofscience]

The man has just done us all a massive disservice.

It's actually a woman...

 

[Ed209]

Do you believe through habituation or an actual reduction in sound or both?

I have no first hand clinical data, so I'm in no position to say with authority. Anecdotally, however, I'd say chronic tinnitus becomes less likely to fade the longer you have it, but there are still known cases of people's tinnitus going altogether, randomly, after 10+ years.

 

[Samantha R]

I have no first hand clinical data, so I'm in no position to say with authority.

I know Ed, just curious on your opinion.

 

[another sean]

So they are referring to chronic cases and they are saying "It is true that the majority of cases, the problem doesn't worsen"

I don't believe this to be true and yes they have undermined the condition with their statements. If it doesn't worsen on its own, there are 1000s of other ways to make it worse and awareness is key in preventing that from happening. What a nice big fat missed opportunity.

Now I know why the asshat emoticon was created for

ATA, American Team of Asshats ...

 

[Agrajag364]

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'.

There is quite a lot of research papers which mention this point when I first got to the test and they were all quite clear that there is no good data on the proportion for whom it fades over time.

Several health professionals and one lawyer (acting on hearing loss) I spoke to said it was clear that it doesn't actually go away over time for significant proportion.

 

[Agrajag364]

Absoutely 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 FB 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.

Although I couldn't agree more that the BTA and the ATA are completely wrong to keep making out that tinnitus is not such a big deal in the vast majority of cases – there appears to be no awareness that this condition can drive many to suicide.

 

[Steve G]

How can someone habituate to something that keeps changing in volume and intensity? I really wish I could.

 

[Ed209]

What you're describing is habitation."

Habitation is where people live. What's a person's habitat got to do with their tinnitus

I think Torryn made his own job irrelevant by the way this whole thing was handled. Needs to be sacked in my opinion.

By the way, Torryn is a woman same as LaGuinn Sherlock; not that it matters. It's a shame LaGuinn can't live up to her name and help fix this thing

 

[Starthrower]

@attheedgeofscience, how can this study qualify as "evidence"?

A "small" "significant" improvement hardly backs the claim that the majority of tinnitus sufferers have their tinnitus fade away.

It is important to provide hope.

 

[Jazzer]

"Dr. Sherlock is the Judas Iscariat
of the body of tinnitus sufferers !!!"

 

[Berik]

"The biggest fear of people stepping on landmines is that they have to miss a leg, but eventually they learn to live with it just fine."

 

[david c]

My main surprise about this is: Why the surprise?? Both the BTA and ATA have been downplaying the impact of tinnitus for quite some time.

View attachment 23838

@attheedgeofscience, how can this study qualify as "evidence"?

A "small" "significant" improvement hardly backs the claim that the majority of tinnitus sufferers have their tinnitus fade away.

Of course it doesn't - but this is fairly typical of the BTA's cavalier approach to evidence - removing the heavy caveats in the original study. The ironic thing is that some of the same people who criticised me and others for making these points about the BTA are now expressing outrage when the ATA does the same thing.

The BTA's website currently states: https://www.tinnitus.org.uk/all-about-tinnitus

"The experience of tinnitus is different for different people. Most people find that it doesn't affect them in any way."

No source for this is given and - given the BTA's track record on cavalier treatment of evidence I would love to see the original research which they are using to make this claim. Maybe @David can enlighten us.

 

[Agrajag364]

There is quite a lot of research papers which mention this point when I first got to the test and they were all quite clear that there is no good data on the proportion for whom it fades over time.

Several health professionals and one lawyer (acting on hearing loss) I spoke to said it was clear that it doesn't actually go away over time for significant proportion.

I dictated this post from my phone and it came out wrong. The health professionals (one ENT and one very experienced audiologist) and lawyer I spoke to were clear that tinnitus DOES go away over time for a significant proportion of people (though the professionals were also clear that it doesn't go for the remaining proportion).

I just observe there are stories online of people for whom it goes even after a number of years. How rare such people are, no one knows.

 

[Helheim]

Ah yes... more "tinnitus isn't actually serious" bullshit. Just what we needed.

 

[Allan1967]

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.

The tinnitus community needs to get its arse into gear and all of us to donate a little every month, write to the Government... anything.

 

[Samantha R]

By the way, Torryn is a woman same as LaGuinn Sherlock; not that it matters. It's a shame LaGuinn can't live up to her name and help fix this thing

Haha, yes I realise Torryn is a woman... I made the mistake of Googling the name rather than finding her profile on ATA. The first couple of hits on the name Torryn come up as a boy's name.

Habitation is where people live. What's a person's habitat got to do with their tinnitus

They actually wrote that - I copied and pasted from Facebook. I didn't even notice! Lol.

 

[derpytia]

To be honest, this is why I distrust the ATA and the BTA (though the BTA is little more on the up and up as far as research).

The only people I can really trust in this community is people here at Tinnitus Talk. As far as I'm concerned, we are and have always been on our own.

If we want to make things happen we have to do it ourselves.

 

[Ed209]

They actually wrote that - I copied and pasted from Facebook. I didn't even notice! Lol.

I know I've seen your posts on Facebook.

 

[TuxedoCat]

They actually wrote that - I copied and pasted from Facebook. I didn't even notice! Lol.

I'm sure yesterday was not one of ATA's better days. If you go back and read the initial response from ATA that Ed posted there's a sentence that don't make sense. The one that makes me chuckle is the bit about tinnitus being a condition no one knows about and then in the next sentence it says that ATA has been around for 50 years. I guess in all that time they forgot to tell anyone about tinnitus. I have a mental image of Torryn Brazell typing furiously on her computer keyboard.

Anyway I've decided not to renew my membership with ATA. I'm learning from being here that I can donate money to organizations and fundraisers without needing them and their scientific advisory board.

Speaking of which, @Samantha and @Ed209, can you think of things that went well or that you would recommend doing again based on your experience with Danny's Fund?

 

[Starthrower]

If we want to make things happen we have to do it ourselves.

@derpytia I agree and it seems that is what Tinnitus Hub/Talk is doing. I was scared to death to start posting here at first. But somehow I landed here and feel at home. We all argue and fight about different things but when one of us falls - it seems like we all rally together to help.

I'm sure yesterday was not one of ATA's better days.

The best way the ATA could have handled this was to have made an apology and stop defending/making excuses for the outrageous remark.

I questioned the statistics about the number of tinnitus sufferers reported by the ATA. I don't have the info but it seems to be the same numbers from when I first got tinnitus in 2002.

 

[Samantha R]

Anyway I've decided not to renew my membership with ATA. I'm learning from being here that I can donate money to organizations and fundraisers without needing them and their scientific advisory board.

Good for you - I'd do the same if I was a member. Your money can definitely be spent better elsewhere.

Speaking of which, @Samantha and @Ed209, can you think of things that went well or that you would recommend doing again based on your experience with Danny's Fund?

Eddie can probably give you the feedback here, I can't take any credit for this as all I did was make a few donations.

 

[Contrast]

When is the ATA going to go after tinnitus scammers?

Let me guess, it's not their job.

Lol just help sell CBT and minimize the public attention on your condition's severity.

 

[TuxedoCat]

The best way the ATA could have handled this was to have made an apology and stop defending/making excuses for the outrageous remark.

Spot on, Starthrower.

 

[Jazzer]

We all argue and fight about different things

"Argue and fight?"
- Do we?
- Really?

(Oh yea - just remembered.
It's okay - as long as we
kiss and make-up. x)