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

[JohnAdams]

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?

I listened to the whole thing the day it was posted. I understand that they donate to research. But I am asking more specifically, like what research did they donate to that is actually working on a cure?

 

[Hazel]

I listened to the whole thing the day it was posted. I understand that they donate to research. But I am asking more specifically, like what research did they donate to that is actually working on a cure?

As to specific cure focused research they fund, @David will have to answer that. But ultimately, that money is still a drop in the ocean, even if it goes to the best research imaginable. So, I think what David is trying to make clear in the podcast (and other times we've spoken to him) is that they're trying to convince others with deeper pockets to invest in a cure.

But in order to get those investments, there has to be a clear business case. Hence, BTA did that study on the socio-economic impact of tinnitus, which defines the business case for finding a cure. And they're talking to pharma companies to convince them to invest. And they created the Roadmap to a Cure, again showing where investments are needed and thus paving the way for more focused research efforts.

I personally think this is the right strategy. BTA by itself will never be able to fund enough cure focused research, but they can make a strong case to others who do have that ability. That is how they can have a real impact. Even though it will be a long and difficult road, no doubt.

 

[David]

Thank you for all of the feedback!

Thanks to @Hazel for answering the questions as they've arisen, doing a better job then I would - thank you.

They claim regenerative medicine and Frequency Therapeutics is in an early phase and too early to state anything outside of opinion.

This is a personal opinion rather than a claim I'd say - aware other have different opinions. We're building links with a few of these companies and gaining a better understanding of how we can work together and their future direction.

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

Started this here; https://www.tinnitus.org.uk/tinnitus-treatments

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.

Not such a big issue in the UK as it is in the US (having visited a Walgreens whilst in Baltimore!). There isn't a quick answer to this but what meets the requirement to be 'clinically proven' is a low threshold to cross in my opinon. As @Hazel also states there's a lot of different ways to get something to market with different regulatory barriers.

Still assessing how best to support and drive 'curative' research and look at how we can support it in different ways too (not just money), building and facilitating partnerships, lobbying and supporting those in the area - offering input from different perspectives. Supplying some of the tools needed to make the case to larger funders. @Hazel put it well.

 

[TuxedoCat]

Just an FYI. Attached is a page from an ATA brochure I picked up at a support group meeting last week. At the bottom it talks about "Experimental Therapies - Hope for the Future". I believe this information can also be found on their website. Seems like the therapies mentioned have been used in clinical trials and no one talks about them very much, so they seem a bit out of date. Not sure what harm it would cause to include that hearing regeneration is in early research phases and whether it will alleviate tinnitus is still an unanswered question. Whether or not ATA or BTA would assert themselves into a discussion with Frequency Therapeutics or other researchers about answering the question sooner rather than later is a separate issue altogether. -TC

 

[Markku]

Transcript Released

We are happy to announce the release of the transcript for the interview with @David from British Tinnitus Association.

You can access the PDF transcript by visiting the episode page and clicking on the CC icon.

Or, alternatively, directly via this link.

We want to extend our warmest thanks to @Liz Windsor for creating the transcript - it takes MANY hours of work to do this, as anyone who's ever transcribed something of this length knows. Volunteers like Liz are a rare breed - thank you Liz!

 

[Barrett Haynes]

Hi British Tinnitus Association, we loved the podcast. But I emailed you guys a long time ago regarding not having had tinnitus since my late teens. However, then I got a Tetanus booster and 3 days later my tinnitus returned, but again eventually faded away.

Now 2 years later I got a Shingles vaccine & the tinnitus is worse again because of the toxins in vaccines!

You need to warn people.

Sincerely, Barrett

 

[Liz Windsor]

I just wanted to say (having seen Markku's post above) that if anyone out there is thinking of volunteering in any way to assist Tinnitus Talk but isn't sure if they have anything useful to offer, just go for it!

I'm so pleased I have been involved with the Podcast transcriptions as I feel as though I am doing something useful. It's nice to have something to offer and, just reiterating what was stated during the Podcast by David, Hazel and Markku I find it actually helps me to be involved in a positive way. This forum has been a fantastic support for me for the last six years as I'm sure it has for many other people. So, just felt like I wanted to pass that on.

I'm actually building up to maybe even adding an Avatar of some sort ... must be about time!

 

[Pero1234]

Excellent podcast! Thank you so much!

 

[Paul Ramsay]

Excellent podcast, thanks! Some great info (especially in Episode 1.)

You should explain the acronyms when using them. What's TRT? Surely not Testosterone Replacement is it?

...and the BTA advice is - see your GP! Oh dear, we all know how that turns out. <sad face>

Although I will definitely look into helping their funding after what I heard from David.

Thanks.

 

[David]

What's TRT?

TRT = Tinnitus Retraining Therapy

...and the BTA advice is - see your GP! Oh dear, we all know how that turns out.

Well we have to say that @Paul Ramsay it is important that everyone with tinnitus gets it checked out. We speak to a lot of people who haven't yet done so. We're trying to change the attitude of GP's to tinnitus but that is a long journey.

Although I will definitely look into helping their funding after what I heard from David.

Thanks