Stop Giving Money to the British Tinnitus Association

[Gl0w0ut]

Recently, the BTA has come out endorsing a new "mindfulness" behavioral therapy for tinnitus patients. What's so great about it? Well, it can reduce distress in some patients. However, they explicitly state that is does NOT reduce tinnitus in any way shape or form. Thus, it is just some fancy "new age" repackaging on CBT or TRT.

To me, this feels like a grave betrayal by an organization that you would think actually seeks tinnitus treatments over coping strategies. But no... like the ATA they have sold out again.

As such, I advise anyone here who donates to tinnitus organizations take that money away from the BTA and give it to someone like Dr. Susan Shore, who actually seems interested in treating tinnitus.

 

[erik]

I see where you are coming from, however, in some cases one's tinnitus can be exasperated due to anxiety and stress. Perhaps mindfulness and CBT are the best treatments for certain people to reduce the reaction and thus the noise (to an extent).

There is no cure, so they cannot promise that. There are not really any viable treatments like taking a pill to treat tinnitus. All that you really have left is self-help or directive behavioral therapies.

That being said, I would really only donate to those organizations which fund actual research and not behavioral therapies since there is already an adequate representation of that.

 

[Contrast]

Most of us are redpilled about this.

This forum is filled with users who mistrust the BTA, it's not like we need to freak out everytime, just keep strong and don't let them represent us as individuals unless they do it so well.

 

[Strife_84]

I think ANY kind of help for tinnitus patients is important.

If my ENT had asked, "would you like to go to a therapist who is specialized helping patients with tinnitus?"

I would have said yes 100 times.

Now we basically get no help.

It's not very encouraging to visit ENT, pay lots of money for a visit and get answers like:

"Walk it off."
"Just learn to live with it."
"Sorry, there is no cure."
"Try these pills."
"Unfortunately we can't do anything."
"It'll get better. Maybe."

But sure, if I'd had to choose I'd donate to an organization that is looking for an actual cure, not just therapy.

I still have a feeling doctors just think we are crazy... My ENT said "it's also probably a bit in your mind". As I do have a history with depression. But not once in my life have I imagined sounds in my head.

 

[Gl0w0ut]

I see where you are coming from, however, in some cases one's tinnitus can be exasperated due to anxiety and stress. Perhaps mindfulness and CBT are the best treatments for certain people to reduce the reaction and thus the noise (to an extent).

There is no cure, so they cannot promise that. There are not really any viable treatments like taking a pill to treat tinnitus. All that you really have left is self-help or directive behavioral therapies.

That being said, I would really only donate to those organizations which fund actual research and not behavioral therapies since there is already an adequate representation of that.

The thing is, behavioral therapies are already established. We do not need more of them. We need actual treatments. Even if this therapy allowed me to relax, sleep soundly without medication, decreased stress... I still would not do it. I will settle for nothing short of an actual treatment.

 

[Strife_84]

The thing is, behavioral therapies are already established. We do not need more of them. We need actual treatments. Even if this therapy allowed me to relax, sleep soundly without medication, decreased stress... I still would not do it. I will settle for nothing short of an actual treatment.

I don't understand why you are so hostile towards such methods. If it can improve quality of life, wouldn't it be worth it?

 

[Gl0w0ut]

I think ANY kind of help for tinnitus patients is important.

If my ENT had asked, "would you like to go to a therapist who is specialized helping patients with tinnitus?"

I would have said yes 100 times.

Now we basically get no help.

It's not very encouraging to visit ENT, pay lots of money for a visit and get answers like:

"Walk it off."
"Just learn to live with it."
"Sorry, there is no cure."
"Try these pills."
"Unfortunately we can't do anything."
"It'll get better. Maybe."

But sure, if I'd had to choose I'd donate to an organization that is looking for an actual cure, not just therapy.

I still have a feeling doctors just think we are crazy... My ENT said "it's also probably a bit in your mind". As I do have a history with depression. But not once in my life have I imagined sounds in my head.

I understand it helps many tinnitus patients. But it feels like a slap in the face to support a treatment that interferes with finding a cure for tinnitus.

 

[Strife_84]

I understand it helps many tinnitus patients. But it feels like a slap in the face to support a treatment that interferes with finding a cure for tinnitus.

Yes, I understand that point. It would be priority to find cure first.

 

[Watasha]

I am more concerned about the ATA. They post things like "Please Help Silence", "Research for a Cure" and "Support Research" while only spending about 14% of their inflows on ACTUAL research grants. When you break down what they spend money on to how they market themselves, it's rather appalling to me and I cannot in good conscience donate or ask anyone to donate on my behalf. Add in their overall perceived apathy (Tinnitus Week efforts were a total joke) and the fact that unlike the BTA, they have no liaison with this community or any community that I'm aware of, I think we should focus more efforts on reforming the ATA.

 

[Contrast]

I am more concerned about the ATA. They post things like "Please help silence", "Research for a cure" and "Support Research" while only spending about 14% of their inflows on ACTUAL research grants. When you break down what they spend money on to how they market themselves, it's rather appalling to me and I cannot in good conscience donate or ask anyone to donate on my behalf. Add in their overall perceived apathy (Tinnitus Week efforts were a total joke) and the fact that unlike the BTA, they have no liaison with this community or any community that I'm aware of, I think we should focus more efforts on reforming the ATA.

I heard rumors Pawel Jastreboff has a lot of say and control over grants regarding tinnitus and all the other otological issues that get merged together under the word "hyperacusis".

 

[Contrast]

There will be no single cure, different treatments for different subtypes/types of tinnitus, hyperacusis, and sensorineural hearing loss.

 

[Contrast]

The vast majority of tinnitus sufferers don't pay attention to what goes on in the field, so that is what allows the TRT/CBT status quo to reign without any challenge.

 

[Watasha]

The vast majority of tinnitus sufferers don't pay attention to what goes on in the field, so that is what allows the TRT/CBT status quo to reign without any challenge.

To be clear, I am not against either one of those. What I have a problem with is an organization marketing itself as a cure/treatment change agent, and then devoting less than 1/5th of their resources to that cause while engaging in what I wound consider very wasteful spending, amongst various other faux pas that spit in the face of people actually bothered by this experience.

 

[Markku]

Otherwise, it's time to create a research consortium that accepts funds and donates only to actual research aimed to reduce/eliminate.

I'm afraid that might not help things much. The Danny Boy memorial campaign was an example of just how difficult it is to raise funds for cure research.

The process was simple. People could donate while knowing that all donors would have a democratic vote to select the grant recipient.

Yet it only netted about £5K in donations. We promoted the campaign very heavily at the time. The BTA also promoted it on their pages.

It's a complicated issue, and not many people wanting to make a difference.

The ATA earlier this year looked for a couple of new Board members. I didn't see much talk here about it. Nobody wanting to try and change things there.

The BTA is also looking for a new Trustee;

"We are currently recruiting for a trustee with a knowledge of fundraising within our board of Trustees. Don't worry -we're not expecting you to bring in the funds or lots of contacts - there's a dedicated staff Fundraising Team to do that! What we do want is someone who can support and offer guidance to the board on the overall fund raising strategy and ambition of the charity. To support and challenge the staff team and be that link to enable Trustees to have more effective oversight of fundraising within the BTA. This expertise may have been built via work or voluntary experience."​

Deadline for applications April 14th.

To summarize, people need to take more action if they want to seek change. Complaining from the sidelines does nothing.

 

[Watasha]

I'm afraid that might not help things much. The Danny Boy memorial campaign was an example of just how difficult it is to raise funds for cure research.

The process was simple. People could donate while knowing that all donors would have a democratic vote to select the grant recipient.

Yet it only netted about £5K in donations. We promoted the campaign very heavily at the time. The BTA also promoted it on their pages.

It's a complicated issue, and not many people wanting to make a difference.

The ATA earlier this year looked for a couple of new Board members. I didn't see much talk here about it. Nobody wanting to try and change things there.

The BTA is also looking for a new Trustee;

"We are currently recruiting for a trustee with a knowledge of fundraising within our board of Trustees. Don't worry -we're not expecting you to bring in the funds or lots of contacts - there's a dedicated staff Fundraising Team to do that! What we do want is someone who can support and offer guidance to the board on the overall fund raising strategy and ambition of the charity. To support and challenge the staff team and be that link to enable Trustees to have more effective oversight of fundraising within the BTA. This expertise may have been built via work or voluntary experience."​

Deadline for applications April 14th.

To summarize, people need to take more action if they want to seek change. Complaining from the sidelines does nothing.

Well - We have to start somewhere. I communicated with the ATA about the request and unfortunately their board meetings are during my busiest times at work which are blackout vacation times otherwise I was on board to apply. But moral of the story is, you're right, we have to start taking more action. Hopefully the STAT Madness campaign was a good motivator.

PS: And by we, I mean everyone else including myself, not you, you do more than your fair share and we appreciate it.

 

[Jack Straw]

I am not even sure why behavioral studies regarding tinnitus are being done anymore. It is like kicking a dead horse. We know all there is to know and any funds going to it is not wasted time and money.

That being said, I think that CBT is a tool that people with tinnitus can use to help relieve stress in other parts of their life to reduce their overall stress. We all know that stress can aggravate tinnitus so why not reduce it? It can also help people to learn to cope and deal with tinnitus and the anxiety and depression that can come with it.

 

[Gl0w0ut]

Most of us are redpilled about this.

This forum is filled with users who mistrust the BTA, it's not like we need to freak out everytime, just keep strong and don't let them represent us as individuals unless they do it so well.

Redpilled? What is this, an incel forum?

 

[Hazel]

Otherwise, it's time to create a research consortium that accepts funds and donates only to actual research aimed to reduce/eliminate.

Maybe Tinnitus Hub can set this up? In a way, we already have, or at least we've piloted this approach with the Danny Boy fund. 100% of the donations went to cure focussed research, and the donors got to vote on the recipient. Can't get more grassroots than that (see my blog post about it). We're thinking of reinvigorating the fund later this year.

Personally, I don't see the problem with promoting mindfullness for tinnitus, since it does help some people. We all understand it's not a cure, and I don't think coping strategies and cure focussed strategies are mutually exclusive. But that's an ever recurring debate on this forum, which we'll probably never resolve; it just takes up a lot of this community's energy and never leads anywhere. I agree wholeheartedly with @Markku that complaining on this forum has never yet achieved anything.

 

[Contrast]

Redpilled? What is this, an incel forum?

@incelitus

 

[GSC]

I think everyone wants a cure over mindfulness in this forum, no doubt about it, and a lot of people are understanding of the percentage of funds is a jip, but people also need to understand that they can't lie down on their backs and expect to get everything handed to them.

This condition sucks and it is heartbreaking, but the majority of people have it soooo mild that they don't give a damn; so it's up for people who are in the know, to do something about it and educate those people and the others around them that it can get worse and not many people have it easy, and even if they do, they don't want it at all.

You can't expect things to be handed to you if you don't work for it, and sadly, that's what I see a lot of here when I go back and look through Tinnitus Week, which I wish I was a part of.

So many people have heartbreaking/gut wrenching stories, but @Markku and @Hazel did not get that many people to speak up about their ailment or what this SHIT has caused to them.

Everyone loved and cherished @Danny Boy with their whole entire being, but donations didn't pour in.

So many people agree with Dr. Rauschecker's understanding of tinnitus, and NO ONE HAS DONATED to that either.

 

[Gl0w0ut]

Maybe Tinnitus Hub can set this up? In a way, we already have, or at least we've piloted this approach with the Danny Boy fund. 100% of the donations went to cure focussed research, and the donors got to vote on the recipient. Can't get more grassroots than that (see my blog post about it). We're thinking of reinvigorating the fund later this year.

Personally, I don't see the problem with promoting mindfullness for tinnitus, since it does help some people. We all understand it's not a cure, and I don't think coping strategies and cure focussed strategies are mutually exclusive. But that's an ever recurring debate on this forum, which we'll probably never resolve; it just takes up a lot of this community's energy and never leads anywhere. I agree wholeheartedly with @Markku that complaining on this forum has never yet achieved anything.

Well this is really the only place to complain and feel validated. You're right about research though. Time to put my money where my mouth is. I'll chip in. I can't offer much but it helps.

 

[Gl0w0ut]

I am not even sure why behavioral studies regarding tinnitus are being done anymore. It is like kicking a dead horse. We know all there is to know and any funds going to it is not wasted time and money.

That being said, I think that CBT is a tool that people with tinnitus can use to help relieve stress in other parts of their life to reduce their overall stress. We all know that stress can aggravate tinnitus so why not reduce it? It can also help people to learn to cope and deal with tinnitus and the anxiety and depression that can come with it.

You hit the nail right on the head. If I had to guess, it's probably the whole "publish or perish" paradigm. Researchers feel pressured to show results, and CBT studies are easy marks. It also makes them money and pads their resume.

 

[david c]

I'm glad that others on Tinnitus Talk are highlighting the failure of the BTA to contribute anything towards the biomedical research we need to see. Most people donating to the BTA's research would expect that it would be helping research towards a cure, not funding yet more research into management strategies when we have literally thousands of those studies already.

What's worse though is the way the BTA have collaborated with the NHS to communicate a "tinnitus isn't such a big deal" message. The current NHS online information - which the BTA participated in writing - says that tinnitus "isn't normally a sign of any serious conditions" - completely ignoring the fact that for hundreds of thousands in the UK tinnitus is a very serious health condition in its own right. It's only when tinnitus sufferers themselves challenge this sort of messaging that we will make any progress towards a cure.

 

[Gl0w0ut]

I think everyone wants a cure over mindfulness in this forum, no doubt about it, and a lot of people are understanding of the percentage of funds is a jip, but people also need to understand that they can't lie down on their backs and expect to get everything handed to them.

This condition sucks and it is heartbreaking, but the majority of people have it soooo mild that they don't give a damn; so it's up for people who are in the know, to do something about it and educate those people and the others around them that it can get worse and not many people have it easy, and even if they do, they don't want it at all.

You can't expect things to be handed to you if you don't work for it, and sadly, that's what I see a lot of here when I go back and look through Tinnitus Week, which I wish I was a part of.

So many people have heartbreaking/gut wrenching stories, but @Markku and @Hazel did not get that many people to speak up about their ailment or what this SHIT has caused to them.

Everyone loved and cherished @Danny Boy with their whole entire being, but donations didn't pour in.

So many people agree with Dr. Rauschecker's understanding of tinnitus, and NO ONE HAS DONATED to that either.

Rauschecker's understanding and gating model is, in my opinion, wrong. He and his colleagues don't deserve funding. Especially when his model has no treatment applications.

I'd rather support Susan Shore.

 

[Agrajag364]

Redpilled? What is this, an incel forum?

Sometimes.

 

[Hazel]

So many people have heartbreaking/gut wrenching stories, but @Markku and @Hazel did not get that many people to speak up about their ailment or what this SHIT has caused to them.

Everyone loved and cherished @Danny Boy with their whole entire being, but donations didn't pour in.

So many people agree with Dr. Rauschecker's understanding of tinnitus, and NO ONE HAS DONATED to that either.

You are unfortunately so right, @GSC. It's sad but very true. There are many on this forum shouting for a cure, but when push comes to shove, few will contribute to that aim.

We often ask for support on projects, but apart from a few highly valued members who've really come through, we hear nothing but chirping crickets when we ask people to contribute in some way. Contributions can be made by telling your story (I mean outside of this forum), by donating to research, donating to Tinnitus Hub (if you like our work), by volunteering for us.

I mean we've offered some of the vocal criticasters on this forum the opportunity to create an entire podcast episode about the topics they find important. All they have to do is .... put in the work to actually create it. Yet so far, nothing.

There are many ways to make a difference, and most people are capable of donating either their time, or money, or connections.

But to stay positive, the community did really come together for the STAT competition, so let's keep up the momentum and build on that!

 

[Gl0w0ut]

Sometimes.

That's incredibly unfortunate.

 

[david c]

You are unfortunately so right, @GSC. It's sad but very true. There are many on this forum shouting for a cure, but when push comes to shove, few will contribute to that aim.

We often ask for support on projects, but apart from a few highly valued members who've really come through, we hear nothing but chirping crickets when we ask people to contribute in some way. Contributions can be made by telling your story (I mean outside of this forum), by donating to research, donating to Tinnitus Hub (if you like our work), by volunteering for us.

I mean we've offered some of the vocal criticasters on this forum the opportunity to create an entire podcast episode about the topics they find important. All they have to do is .... put in the work to actually create it. Yet so far, nothing.

There are many ways to make a difference, and most people are capable of donating either their time, or money, or connections.

But to stay positive, the community did really come together for the STAT competition, so let's keep up the momentum and build on that!

There is growing momentum for a campaign in the UK to persuade the NHS to recognise that tinnitus is a serious health condition, to change their online definition of tinnitus to acknowledge that fact - particularly removing wording that states that tinnitus is not in itself a serious condition - and to advocate for significant NHS funding for biomedical research into tinnitus.

A couple of us are working hard on this at the moment - it may take the form of petition, though other formats are possible.

Hopefully this will be something that Tinnitus Talk can help support - it will make a significant impact on the lives of those with severe tinnitus.

 

[Jack Straw]

That's incredibly unfortunate.

I think she is joking. I don't see anyone really having Incel like behavior on here. Or maybe I don't fully understand what an Incel is. Lol

 

[Gl0w0ut]

I think she is joking. I don't see anyone really having Incel like behavior on here. Or maybe I don't fully understand what an Incel is. Lol

Ah, well hard to tell on the internet. My bad.