Episode 2: A World Without Tinnitus — David Stockdale (British Tinnitus Association)

[Tinnitus Talk]

Hey there everyone!

We are absolutely delighted to be launching the second episode of our podcast series! In this episode, we interview David Stockdale, the chief executive of the British Tinnitus Association (BTA). He is a frequent presence on this forum under the user name @David.

In the interview, David talks about his drive to accomplish the BTA's vision: "A world where no one suffers from tinnitus." We also addressed questions like: How can tinnitus associations move the research field forward? How do they convey the tinnitus experience to the broader public? What are the pros and cons of promoting certain treatments?

​

Listen on:

• Tinnitus Talk Podcast (incl. timestamps and transcript)
  
• SoundCloud
  
• iTunes
  
• Spotify

We welcome any discussion about the BTA and the role of tinnitus associations in general. But please keep the following in mind when commenting:

- Off-topic comments, i.e. not directly responding to the content of the podcast, will be removed. So please do listen before commenting!
- While we welcome constructive criticism on ideas or policies, we do not tolerate direct attacks on individuals.

Tinnitus Talk would like to thank @David for taking time out of his busy schedule to record this interview with us, and for being so approachable and willing to engage with the community! We also want to thank @TuxedoCat for previewing the episode and providing valuable input.

This episode was produced by @Jack Straw, @Markku and @Hazel. You'll get to hear all three of us in the episode as well.

If you enjoyed the podcast, we'd appreciate it greatly if you left a review using the podcast app of your choice.


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Share the podcast on your social media and with your tinnitus friends!

 

[glynis]

I really enjoyed this podcast and listening to you all. My involvement with the BTA goes back many years. What they do is amazing and the Quiet magazine that Nic Wray does is brilliant.

Glad to hear another Tinnitus Expo is in the planning.

David and the rest of the BTA staff are lovely and it was nice talking with them in person.

Well done David, Markku, Hazel and Jack. I would have loved to be in this Podcast...

love glynis x

 

[Hazel]

I would have loved to be in this Podcast...

Glynis, we would love to have you on! There will be many more episodes coming out this year, so it's just a matter of which topic suits you best really. Feel free to PM us about this and we can make a plan

 

[Markku]

Thanks Glynis for your lovely words! Glad you enjoyed it.

I would have loved to be in this Podcast...

You would have made a fantastic participant! We thought about the number of guests in any one episode before starting the Podcast series, and thought that four might be a good maximum to target - otherwise it could start to feel a little hectic and difficult to follow.

We'll definitely have you on for one of the upcoming episodes. When we have a good topic you'd like to be part of, you're so welcome to join!

 

[Jack Straw]

I really enjoyed this podcast and listening to you all. My involvement with the BTA goes back many years. What they do is amazing and the Quiet magazine that Nic Wray does is brilliant.

Glad to hear another Tinnitus Expo is in the planning.

David and the rest of the BTA staff are lovely and it was nice talking with them in person.

Well done David, Markku, Hazel and Jack. I would have loved to be in this Podcast...

love glynis x

I'm glad you enjoyed it!!

 

[Paulmanlike]

Thank you very much for this!!

I would love to be part of one or anything else I can to do to help.

Looking forward to Richard Tyler's podcast.

56 minutes in... David was talking about Acoustic CR Neuromodulation, wasn't he?? Is that what you thought?

 

[Hazel]

Thank you very much for this!!

I would love to be part of one or anything else I can to do to help.

Looking forward to Richard Tyler's podcast.

Thanks! If you want to help out, feel free to PM us about it and we can discuss

56 minutes in... David was talking about Acoustic CR Neuromodulation, wasn't he?? Is that what you thought?

I suspected he was referring to the Tonaki Tinnitus Protocol thing, an obvious total scam, but some people still got taken in by it.

But now that I think about it, it could have been ACRN as well. Not a scam obviously, I mean there was some science behind it, but in the end it didn't live up to expectations and the data - upon publication - was not that convincing.

I guess we'll never know!

 

[Paulmanlike]

Thanks! If you want to help out, feel free to PM us about it and we can discuss


I suspected he was referring to the Tonaki Tinnitus Protocol thing, an obvious total scam, but some people still got taken in by it.

But now that I think about it, it could have been ACRN as well. Not a scam obviously, I mean there was some science behind it, but in the end it didn't live up to expectations and the data - upon publication - was not that convincing.

I guess we'll never know!

I thought it may have been ACRN because that costs thousands of pounds and the company was Desyncra. According to their website people have had reductions in tinnitus and some have had their tinnitus eliminated, I believe they probably have, but it's a hit and miss whether one would respond to ACRN.

I've never heard of Tonaki Tinnitus Protocol.

 

[Contrast]

I kept important notes on things I liked (sorry I didn't date the time):

1: The BTA's goal is to create a world where no one suffers from tinnitus, they distinguish suffering from curing tinnitus but stated that curing tinnitus is obviously a strongly needed goal.

2: 20% of the US population allegedly has or has had tinnitus, tinnitus research is laughable compared to breast cancer research which is far more prevalent.

3: 19% of BTA's budget was spent on research in 2018.

4: BTA's spendings are overlooked by a third party.

5: 5000 pounds ($6622 USD) towards Danny Boy's fund.

6: Tinnitus disability cost £2 billion GBP ($2.64 billion USD) per year in the UK. US statistics aren't mentioned but it is stated it is "a massive cost" as well.

7: NHS spends £750 million GBP ($993 million USD)

8: The team discusses the lack of empathy from medical professionals and how to improve it, and how tinnitus should be classified by subtypes depending on if it is caused by TMJ or hearing loss. Sadly no mention of hidden hearing loss

9: BTA is waiting for peer reviewed conclusions on Neuromod's device before they endorse it, now they are 100% neutral. They claim regenerative medicine and Frequency Therapeutics is in an early phase and too early to state anything outside of opinion.

10: The BTA announced they will start calling out efficient treatments and snake oil.

That's right, the BTA will possibly list what is and what isn't a scam.

(Thanks to me, Contrast! )

11: They stated the truth that subtypes of tinnitus are treated differently and there will be no one-fits-all-size cure when treatments arrive in the future.

12: BTA doesn't support TRT. Mr. Stockdale stated: The world's moved on a little bit, don't resurrect it, it's dying in the UK, Jack Straw then stated it is prevalent in the United States and problematic.

13: BTA wants to be more active in the cure space to get a lot of research out. Then the episode closes.

_____________________________________________________________________


My Personal Comments

This was well put together and progress is moving forward. I like how the BTA is obviously taking research more seriously, and especially how they are going to review and recommend/discourage tinnitus treatments, whether they be scams, quackery or inefficient for certain scenarios. This will make a huge impact.

The only criticism is being so centric to just tinnitus when it is obviously tied into hearing loss, noise induced pain, loudness hyperacusis, TMJ, visual snow and even trigeminal neuralgia or another inner ear disease like Meniere's disease.

Along with medical practitioners lacking empathy they are also very fond of research, we need to be more progressive. I am hoping on a future podcast about the link between tinnitus and known potentially related pathological conditions.

I would also love to see an episode about pain hyperacusis, even though it isn't just tinnitus, maybe we can try contacting Hyperacusis Research in the future and see if we can get them to do a podcast on this.

Thank you for doing this podcast, it helped a lot.

 

[Hazel]

I kept important notes on things I liked (sorry I didn't date the time):

1: The BTA's goal is to create a world where no one suffers from tinnitus, they distinguish suffering from curing tinnitus but stated that curing tinnitus is obviously a strongly needed goal.

2: 20% of the US population allegedly has or has had tinnitus, tinnitus research is laughable compared to breast cancer research which is far more prevalent.

3: 19% of BTA's budget was spent on research in 2018.

4: BTA's spendings are overlooked by a third party.

5: 5000 pounds ($6622 USD) towards Danny Boy's fund.

6: Tinnitus disability cost £2 billion GBP ($2.64 billion USD) per year in the UK. US statistics aren't mentioned but it is stated it is "a massive cost" as well.

7: NHS spends £750 million GBP ($993 million USD)

8: The team discusses the lack of empathy from medical professionals and how to improve it, and how tinnitus should be classified by subtypes depending on if it is caused by TMJ or hearing loss. Sadly no mention of hidden hearing loss

9: BTA is waiting for peer reviewed conclusions on Neuromod's device before they endorse it, now they are 100% neutral. They claim regenerative medicine and Frequency Therapeutics is in an early phase and too early to state anything outside of opinion.

10: The BTA announced they will start calling out efficient treatments and snake oil.

That's right, the BTA will possibly list what is and what isn't a scam.

(Thanks to me, Contrast! )

11: They stated the truth that subtypes of tinnitus are treated differently and there will be no one-fits-all-size cure when treatments arrive in the future.

12: BTA doesn't support TRT. Mr. Stockdale stated: The world's moved on a little bit, don't resurrect it, it's dying in the UK, Jack Straw then stated it is prevalent in the United States and problematic.

13: BTA wants to be more active in the cure space to get a lot of research out. Then the episode closes.

_____________________________________________________________________


My Personal Comments

This was well put together and progress is moving forward. I like how the BTA is obviously taking research more seriously, and especially how they are going to review and recommend/discourage tinnitus treatments, whether they be scams, quackery or inefficient for certain scenarios. This will make a huge impact.

The only criticism is being so centric to just tinnitus when it is obviously tied into hearing loss, noise induced pain, loudness hyperacusis, TMJ, visual snow and even trigeminal neuralgia or another inner ear disease like Meniere's disease.

Along with medical practitioners lacking empathy they are also very fond of research, we need to be more progressive. I am hoping on a future podcast about the link between tinnitus and known potentially related pathological conditions.

I would also love to see an episode about pain hyperacusis, even though it isn't just tinnitus, maybe we can try contacting Hyperacusis Research in the future and see if we can get them to do a podcast on this.

Thank you for doing this podcast, it helped a lot.

Wow, those are some very extensive and comprehensive notes! No doubt very useful to other listeners

Thanks, @Contrast!

 

[Starthrower]

I just finished listening to this podcast.

It was excellent to see a representative like @David from the BTA discuss the issues with Tinnitus Hub/Tinnitus Talk for the members here.

In my experience it is rare for an organization to be involved with an outside internet forum of any kind. I was told point blank here in the USA that it would never happen. And it did not.

So taking this on was a huge win for @Jack Straw, @Markku and @Hazel.

The appreciation is something everyone should comment on.

 

[TuxedoCat]

Wow, really nice conversation.

I'm tired after listening David talk about all that the BTA do and plan to do! Sure is a lot of energy there. @Contrast, love your notes, they are making me tired too!

One thing is for certain, no one can say the BTA is not transparent, David really knows his organization and tinnitus research very well. It's going to be an interesting year.

Thanks all,
TC

 

[Starthrower]

12: BTA doesn't support TRT. Mr. Stockdale stated: The world's moved on a little bit, don't resurrect it, it's dying in the UK, Jack Straw then stated it is prevalent in the United States and problematic.

It is my understanding that in the USA to get certified as a TRT "expert" all that is needed is a weekend course. That is all. And probably one reason TRT is "prevalent" here.

 

[TuxedoCat]

So it's no secret that I previewed the podcast. What a fun thing that is to do! Aside from pointing out some dead air or mumbling that might be edited out here were my comments after previewing the conversation. If anyone knows the answers please share.

I would have liked to hear how it is that that companies can make the claims they do for these so-called tinnitus products and cures? Is it a lack of government regulation or lack of enforcement of existing regulation, are these companies or products operating in a gray area because tinnitus is considered a symptom and not a disorder or disease in and of itself? Personally, I don't believe that having information on BTAs is really going to stop anyone from trying a supplement or a product because they are desperate for relief. Even the ENTs in the US are starting to tell people to try Lipoflavonoids because they are desperate to give their patients something to try.

Also as far as regenerative medicine goes, I think those who are quite vocal on the forum wonder why ATA and BTA are not out there lobbying regulators and government funding agencies making a strong case that tinnitus is a serious healthcare concern and that more resources are needed to solve this. Therefore there is a strong enough need for government to divert resources away from other matters and direct it towards regenerative medicine or anything else that looks to be a promising cure. Everyone remembers the AIDS crisis and how researchers, clinicians, WHO and regulators came together and fast tracked treatments and even came up with drug cocktails to provide maximum efficacy. There may be other examples, but there is a sense that there is no energy or fire at ATA or BTA's to really push for a cure.

I didn't make this last comment after the preview but here it is anyway. If there is ever an opportunity, I'd love to hear what David Stockdale considers to be his most important accomplishments in his last 8 years at BTA.

Take care,
TC

 

[david c]

A lot of hard work went into this so credit to the team at Tinnitus Talk for that. However, the fact that no Tinnitus Talk members were able to submit questions in advance for this podcast does mean this feels like something of a missed opportunity. If we had been able to submit questions the main one that I would have asked is why has the BTA done nothing in terms of biomedical research for a cure?

 

[Markku]

A lot of hard work went into this so credit to the team at Tinnitus Talk for that. However, the fact that no Tinnitus Talk members were able to submit questions in advance for this podcast does mean this feels like something of a missed opportunity. If we had been able to submit questions the main one that I would have asked is why has the BTA done nothing in terms of biomedical research for a cure?

Thanks for listening!

We could have solicited questions from the community (like we did with the Neuromod Q&A and are now doing with the upcoming Richard Tyler interview), but there were a few reasons why we didn't this time around:

• There wasn't a lot of time between scheduling and carrying out the interview (soliciting questions takes a lot of time and effort, for example, @Hazel spent approx 8 hours collecting, curating, and structuring the interview questions for the Neuromod Q&A) - we also were in the midst of preparing for Tinnitus Week, had Gaby Olthuis's mom's interview etc., basically were busier than ever before
  
• We (I, @Hazel, @Jack Straw) genuinely thought we'd be able to cover most of the questions that the community would be interested in - and so far the feedback gladly seems to support this
  
• It's also good to remember that there's unfortunately never enough time to ask all questions people want to know, so even if you had had the opportunity to submit a question, it might not have made the cut, and you probably would have not been too pleased about that, either

Finally, I'm sure there will be future opportunities to ask more questions.

For what it's worth, @David did answer to you before here:
https://www.tinnitustalk.com/posts/365988/

We did run a campaign seeking to raise significant funds to develop a 'pill for tinnitus,' but got nowhere near the target. That was a few years ago now and led eventually to us commissioning the work with Dr Schaette. So all was not lost but we certainly got nowhere near the funding we were looking for. So when we have run a specific biomedical campaign, we haven't necessarily succeeded.

We are working to look at how best to design work to progress towards a cure. This is frustrating and moving far slower then I'd like at the moment as it is a major challenge to figure out where we'd be able to make the most progress and exactly how much it would cost. Everyone has an opinion and we've sought to consult with all key players (and of course with people living with tinnitus) on how best to design something to move curative tinnitus research forwards. A lot of the work I've spoken about so far is leading to this, looking for collaboration and how you pull in funders with far deeper pockets than the BTA, along with how to get more support from the tinnitus community. We're aiming to pull together something for Spring next year. I know that seems a long way away but I want to make sure what we put together is robust, the costs of the project realistic and will have the impact to move research forwards globally.

None of this is straightforward, if it was, it would have been done already.

And a further comment by him here:
https://www.tinnitustalk.com/posts/365085/

Hopefully we can both agree on the need for, "Well-funded, and properly conducted, biomedical research." And move on from there.

It seems the BTA have significant plans for this year, and hopefully we'll see more steps into the directions you're (and we're) hoping they take.

Your feedback has now regardless been taken into account. We would really like this discourse about BTA's lack of biomedical research to continue in the thread you created, and not overtake the podcast episode discussion. Thanks!

 

[Agrajag364]

Thank you so much for doing this, you guys are amazing.

 

[Jack Straw]

A lot of hard work went into this so credit to the team at Tinnitus Talk for that. However, the fact that no Tinnitus Talk members were able to submit questions in advance for this podcast does mean this feels like something of a missed opportunity. If we had been able to submit questions the main one that I would have asked is why has the BTA done nothing in terms of biomedical research for a cure?

They did address biomedical research, specifically regenerative medicine, in this podcast.

 

[Starthrower]

What impressed me the most with @David from the BTA was the fact that he spoke honestly and openly and without the "superiority" mental attitude that other organizations use. The blah blah blah with no meaning because they are afraid to take any stance and in my personal experience told the organization cannot endorse any one or any product - they can only suggest such things by providing a list.

Witnessing the steps the BTA has taken and represented by @David has influenced me to financially support that organization.

The turn over rate here in the USA is astounding with the ATA. And having knowledge first hand - I know why.

This was a very important interview by @Jack Straw @Markku and @Hazel.

Unfortunately so many just don't care for whatever reason.

 

[Allan1967]

I haven't listened to this yet, but thanks to the Tinnitus Talk Team for all you do.

As a UK resident I really want to see 'someone', whether it's the BTA or another organisation, screaming their best war cry from the rooftops for us, the tinnitus sufferers.

They are all we have and we so desperately need those who are already established to help find us that cure we so desperately need.

 

[Hazel]

I haven't listened to this yet, but thanks to the Tinnitus Talk Team for all you do.

As a UK resident I really want to see 'someone', whether it's the BTA or another organisation, screaming their best war cry from the rooftops for us, the tinnitus sufferers.

They are all we have and we so desperately need those who are already established to help find us that cure we so desperately need.

Thanks for the recognition, Allan. We certainly do our best, with the limited resources we have. And from what I can see, so does the BTA; though I'm sure you may not necessarily agree with all their policies. In any case, I'm really keen to hear what you think after having listened.

 

[Hazel]

I would have liked to hear how it is that that companies can make the claims they do for these so-called tinnitus products and cures? Is it a lack of government regulation or lack of enforcement of existing regulation, are these companies or products operating in a gray area because tinnitus is considered a symptom and not a disorder or disease in and of itself? Personally, I don't believe that having information on BTAs is really going to stop anyone from trying a supplement or a product because they are desperate for relief. Even the ENTs in the US are starting to tell people to try Lipoflavonoids because they are desperate to give their patients something to try.

My understanding is that this problem is not unique to tinnitus per se, but rather a regulatory issue related to the fact that dietary supplements and many other over-the-counter products are not considered medicines, and therefore different regulations apply than when for instance launching a new drug. I don't think there's any requirement - for these types of products - to back up your claims with scientific evidence, so they can basically claim whatever they want. But... that's just based on my limited understanding of such regulation, so feel free to correct me, anyone.

I agree that part of the problem is people are simply desperate for relief and will try anything; and unscrupulous businessmen/women will take advantage of this. It's very concerning indeed when doctors start recommending these products; probably they feel helpless too and just want to offer something - there's always the placebo effect after all. My GP actually once tried to prescribe me a homeopathic remedy and when I called her out on it, she said: "Oh, I don't believe in it either, but it can still work because of the placebo effect."

 

[Ed209]

Apologies for the radio silence but there's been a lot going on in my life. I will be listening to the podcast ASAP.

 

[Allan1967]

I listened to it just now. I've been hard on the BTA, especially on their Facebook page but I am pleased to hear David say that it's his ambition to close the BTA by having achieved the mission of riding this planet of tinnitus.

If he is genuine in his drive to achieve this, then they have my full support. Thanks to the team for pulling this together and with such a professional style too.

 

[Ed209]

It's interesting what David says at around 15 minutes: the fact that other conditions, such as cancer, have many charities focusing their attention on varying aspects from research to care. It highlights how big of a job it is for such a small team with minimal resources to cover all these bases. It's a constant balancing act and we know that tinnitus charities don't generate anywhere near as much money as others do.

Jack raises a good point at around 26 minutes. He mentions how unregulated charities are in the US and that there are no real audits looking at where the money goes. This is potentially a huge problem that needs highlighting further, as charities need to be held more accountable to how they spend people's money. I think the BTA are very transparent in this regard.

Hazel, you asked a question I would have asked myself at around 30 minutes, namely, why is it so difficult to raise money for tinnitus via online fundraisers? It's interesting to note that a lot of the BTA's money comes from gifts left in wills and from people they have either helped or met face to face. There's something very human and relatable about this which seems obvious in retrospect. This is likely true for most charities. My mom gives a lot of money to our local hospice because they have helped many in my family, who were terminal, to die in a dignified way. This also compelled me to do the same, whereas if I had no association with them, it's extremely unlikely I would have given them anything. It seems obvious that money is better generated when you actually help people like the BTA are doing with their support groups and phone line. There's no perfect answer as to where the money should be spent and there's been many debates on here about this exact issue. It's possible that if you put the majority of the money that's received, into research, that the funds coming in may dry up as a direct result of not helping people right now. I think it's more complex than people realise in some respects. And as we know, it's easier to complain on here then it is to actually get out there in the real world and do something about it.

David's point at 32 minutes reminds me of your comparison to the donkey charity, Markku. He basically says that you can have the room on your side and then a charity for deaf dogs may enter with a cute puppy and nobody will remember what you've just said. This is the emotional aspect to giving or contributing at play again, and demonstrates the need for a stronger emotional plea from the tinnitus community. This is the one thing that the general public at large don't get to see because it's hidden away out of view. I once posted a video of Terry Crews bravely (and very emotionally) talking about domestic violence and the need for more people to stand up and be counted. The reasons he gave for not speaking about it sooner completely mirrored the reasons why some tinnitus sufferers don't. Here's the clip:



Jack, I agree with you that people are most likely just ignorant. Not maliciously, but until it affects you personally, nobody cares. This to me highlights the importance of education on the dangers of sound at an early age. When we learn meaningful life lessons early on in life, the information is often taken as gospel and is carried on into later life.

Once Pandora's box has been opened (regarding tinnitus) it can never be closed, and by this I mean once you've had it chronically and intrusively, even if it goes away, the changes in our behaviour stays.

Two billion it costs the economy and yet it's still completely under the radar.

I agree about not promoting treatments until there's an evidence base - because of raising false hope. High quality randomised trials are essential; I agree, David. Waiting for validation with robust evidence is the right approach rather than speculating as all we do is go around in circles until we know one way or the other. Also, regenerating one's hearing really is the golden goose (as David put it), so if one of the companies that are currently involved in trying to achieve this come through, it will completely change the game.

This was a great interview that touched on some really important points. The presentation was super slick and professional as always. Well done guys!!

 

[Jcb]

I'm hoping the BTA does follow through with pushing for a cure and having a world without tinnitus instead of putting the focus on "coping methods".

I know it won't happen overnight but I'm happy with what I've heard so far.

Thanks my people for all your hard work. I mean that.

I have to say I loved the mixture of different accents, all so smooth and tinnitus friendly even the American had a smooth voice

 

[Hazel]

@Allan1967 and @Jcb thanks for the positive feedback! There's a lot of time and effort that goes into this behind the scenes, and your appreciation really means a lot You're both - at times - critical voices here, but in a constructive and rational manner, which is a good thing and welcomed here.

@Ed209, wow thanks for the extensive analysis and feedback! As always, it's clear you've really thought this through, and you remain one of the few putting their money/actions/efforts where their mouth is, a real positive force on this forum!

 

[JohnAdams]

So I may be ignorant, but, can someone tell me exactly what the BTA is doing that is moving us closer to a cure?

 

[Hazel]

So I may be ignorant, but, can someone tell me exactly what the BTA is doing that is moving us closer to a cure?

I'm not sure I understand: Did you listen to the episode but it wasn't clear to you what the BTA is doing to promote a cure? Or did you not listen and are just wondering?

 

[TuxedoCat]

So I may be ignorant, but, can someone tell me exactly what the BTA is doing that is moving us closer to a cure?

Not sure we have a lot of details, John. David Stockdale did go the the ARO meeting. He's started a blog on BTA's website. It's worth reading. TC