Talking Tinnitus — a U.K. Expo in Birmingham on Saturday, 15th September, 2018

[Ed209]

@Starthrower,

Sadly the response to the video from Tinnitus Talk members and the Tinnitus Hub Facebook Group members is very poor. Response on Twitter is poor as well.

For example: Tinnitus Hub on Facebook, 600 views on the video (low compared to other videos), and only about 10-12 reactions.

I watched it and thought it was well put together and insightful. It's a shame to hear the stats aren't so good.

 

[Steve]

@Steve and @Markku,

I believe you have created a new nonprofit tinnitus empire that is on the brink of expanding.

This is going to be a bigger deal than anyone realizes. The tinnitus community is going to benefit.

I think your preparation has met your opportunity which always means success.

Thank you. The opening video is great.

Hazel is beautiful and you are handsome!! And the way you converse is very appealing to listen to.

Congratulations!!!

Thanks! Although the internet is brilliant at making things seem larger and more organised than they really are. At the moment we're a scattered group that do what they can when they can.

We do a lot considering the resources we have, I was especially proud to have some amazing people volunteering their time to help others at the BTA Expo. Along with the ability to contribute to research data that's the strongest thing we have - showing people they are not alone and sharing information and techniques that may help.

 

[Greg Sacramento]

@Ed209 There are some brilliant practitioners that have collected extremely value information on different aspects of physical tinnitus. Often they have low profiles. There's just not enough of them to be able to work in team care.

I could post a hundred more links to where brilliant hands on practice specialized teams helped a patient with physical tinnitus.

One problem is established medical healthcare with hospital association where team involvement rarely exist for those with tinnitus. Craniomandibular with facial input and ear trauma needs to be team treatment.

Awareness needs to begin with having proper care given by high profit hospitals.

 

[TuxedoCat]

You wonder how many people who train in auditory fields will look at it now and see how much work has gone into it for the level of understanding we currently have and think that it is too complex to get in to.

I read Prof Deb Hall's interview with Tanisha Hammill which is posted on BTA's website.

That was the second time I'd seen stagnation mentioned, the other was by Josef Rauschecker in his abstract for the last TRI conference.

Also disparate results which could mean scientists are working in the field in silos and not provided with enough opportunity for exchange of ideas and sharing of results, both positive and negative which are informative.

With the limited resources available there needs to be global coordination - right now it's DoD with its programs, ATA with its roadmap to a cure, BTA with its own roadmap, TRI with its own goals and initiatives.

Where is the over-arching coordination that would provide cohesiveness for working smart, a common goal, the route(s) to get there, navigation and continued inspiration and encouragement for researchers?

I hope it's there and I'm just not seeing it. Without it, tinnitus research is just an overwhelming pile of negative results to run away from and not to learn from.

Let's face it, we know nothing and I believe that image demonstrates a powerful message that is true across all fields and disciplines. Whenever someone has true knowledge on a subject they will often say they have no idea when looking at complex issues. As Richard Feynman once said: "If you think you understand quantum mechanics, you don't understand quantum mechanics."

You could quite easily replace quantum mechanics with tinnitus in that quote.

Is the Expert Phase "I know nothing" or is it "I know what I don't know?"

Knowing what you don't know is a good place to be. Complexity shouldn't be a factor that discourages researchers from joining the field, it should be the intellectual challenge that draws them in.

The challenge is solving the puzzle, but not every piece has to be in place before you know the answer.

TC

 

[GregCA]

Something David Stockdale shared with me really hits home on this which I'll share below.

View attachment 22399

This is especially true for all of us amateurs reading through various studies believing we have insight about the mechanisms of tinnitus.

Let's face it, we know nothing and I believe that image demonstrates a powerful message that is true across all fields and disciplines. Whenever someone has true knowledge on a subject they will often say they have no idea when looking at complex issues. As Richard Feynman once said: "If you think you understand quantum mechanics, you don't understand quantum mechanics."

You could quite easily replace quantum mechanics with tinnitus in that quote.

That is the Dunning-Kruger effect: https://en.wikipedia.org/wiki/Dunning–Kruger_effect

 

[glynis]

I watched it and thought it was well put together and insightful. It's a shame to hear the stats aren't so good.

Hi Ed209,
If members whom have tinnitus don't show support for all the hard work that went into the Expo and the videos to relay back what went on, and the free time given up to make them, and the cost, then unfortunately it doesn't look great on us.

A lot more information and videos will follow and put on Tinnitus Talk and Tinnitus Hub and the Tinnitus Hub Facebook Group and Twitter but it would be nice to know it was all worth the effort and members did gain something from the Talking Tinnitus Conference and Expo!

love glynis

 

[Ed209]

Is the Expert Phase "I know nothing" or is it "I know what I don't know?"

Knowing what you don't know is a good place to be. Complexity shouldn't be a factor that discourages researchers from joining the field, it should be the intellectual challenge that draws them in.

The challenge is solving the puzzle, but not every piece has to be in place before you know the answer.

The point of my post was to highlight the flaws to most armchair critics' opinions. The more we think we know the less we probably do, and this applies in many situations. There are too many trolls attacking the wrong people - as @Steve pointed out - which must put key people off.

I'm all for research, so there's no reason to convince me. Every new discovery that can be replicated is a new milestone towards a better understanding, and ultimately, an effective treatment. Science and knowledge underpin our entire civilisation.

 

[JohnAdams]

Will the Neuromod device be a cure for tinnitus, or just give some relief, a bit like a TENS device for pain?

I sincerely doubt it will be a true cure.

However I believe that it will train the brain to cancel out the bothersome noise, and seeing that it is not a drug, it is probably the greatest thing we will have until a true cure is found.

Just my opinion.

 

[Ed209]

Hi Ed209,
If members whom have tinnitus don't show support for all the hard work that went into the Expo and the videos to relay back what went on, and the free time given up to make them, and the cost, then unfortunately it doesn't look great on us.

A lot more information and videos will follow and put on Tinnitus Talk and Tinnitus Hub and the Tinnitus Hub Facebook Group and Twitter but it would be nice to know it was all worth the effort and members did gain something from the Talking Tinnitus Conference and Expo!

love glynis

I couldn't agree more, Glynis. It's one of my biggest bugbears about the tinnitus community. There's just too much apathy and expectation for other people to do all the heavy lifting. This becomes very apparent when you become more involved like Markku, Steve, Hazel, and you are.

They won't say it because there has to be a level of professionalism, but they must be pulling their hair out quite frequently (I know have). I have crazy respect for all of you guys and all the hard work that you do. I'm surprised there aren't more benefactors, to be honest, as it's the least people could do. Not only are the costs high to run Tinnitus Talk, but look at all the effort that is put in to the benefit of all the tinnitus community. You don't expect anything in return, but I feel more people should be supporting you guys.

 

[Starthrower]

There are a band of trolls that seek out those who put their heads above the parapet and spread malicious things about them with fake (and sometimes real) accounts. They just don't understand the damage they do because it will prevent others joining the field, or stop research funding.

This has been going on since I can remember. There are certain people who seem to take issue with anyone who has a better opinion(s) or experience(s) and takes great efforts to say libelous remarks. Not to forget very negative remarks on message boards regarding tinnitus professionals or programs.

I have always felt the "tinnitus god" syndrome has deterred professionals from any participation on social media.

Even when Matteo de Nora donated about 20 million for the formation of TRI instead of positive reactions the "tinnitus gods" were threatened and destroyed the organization and its formation on other message boards.

Why not be happy and work together? Different organizations and "tinnitus gods" are instead threatened.

This happened to my husband and I personally in the tinnitus community. So I very well understand.

 

[Starthrower]

A lot more information and videos will follow and put on Tinnitus Talk and Tinnitus Hub and the Tinnitus Hub Facebook Group and Twitter but it would be nice to know it was all worth the effort and members did gain something from the Talking Tinnitus Conference and Expo!

I agree @glynis.

Why not put the Expo Video on Support here on Tinnitus Talk?

I do not use any type of social media like Facebook or Twitter or anything else. There are many of us who are not on that type of social media at all for various reasons. So my feedback and thanks are put here on Tinnitus Talk.

 

[TuxedoCat]

The point of my post was to highlight the flaws to most armchair critics' opinions.

Ahhh, OK I thought it was about the researchers and scientists who I tend to think of as Experts or Key Opinion Leaders, not the armchair critics. So I was thinking more about metacognition. -TC

 

[Ed209]

Ahhh, OK I thought it was about the researchers and scientists who I tend to think of as Experts or Key Opinion Leaders, not the armchair critics. So I was thinking more about metacognition. -TC

I posted this image ages ago. I think it's a brilliant example of perspective and fits perfectly within the world of tinnitus.

 

[David]

That was the second time I'd seen stagnation mentioned, the other was by Josef Rauschecker in his abstract for the last TRI conference.

I'm not sure it has stagnated. I've discussed it with Josef Rauschecker before too. I think there's two connected issues. One is there's no overarching strategy (to your second point) and the other is there's no real emphasis to get a product/solution to market. So you see some really interesting basic science projects presented that go nowhere because the team running it don't have the contacts to translate it into human trials, etc. Of course the other side of this is when a device (typically) gets rushed to market with no evidence base. There's a lot of research going on but it doesn't feel like there's a real push towards one area at the moment - bimodal stimulation might become it in the short term.

With the limited resources available there needs to be global coordination - right now it's DoD with its programs, ATA with its roadmap to a cure, BTA with its own roadmap, TRI with its own goals and initiatives.

We're trying! So I've presented the BTA cure map at TRI and to the ATA board - the feedback was positive so hoping we can move forward with consensus of how to drive curative research forward from a funders perspective.

Without it, tinnitus research is just an overwhelming pile of negative results to run away from and not to learn from.

I think there's a slightly different challenge. The trials that fail don't get presented or written up - which is a concern in itself. Almost all research presented at TRI/ITS shows a slight/moderate improvement. Makes you scratch your head as pretty much everything seems to work a little. The acupuncture papers are particularly interesting. It seems whatever the 'active' type of acupuncture is that's being trialled works slightly better than the control. Really demonstrates the challenge of researching in tinnitus.

That is the Dunning-Kruger effect

Think the chart is a (politer!) modification of that. I like to refer on it every now and then to remind myself of the journey I'm on along it.

 

[Candy]

Thanks @David, great insight and it was a pleasure meeting you at the Expo.

(Lady with the black glasses)

 

[TuxedoCat]

We're trying! So I've presented the BTA cure map at TRI and to the ATA board - the feedback was positive so hoping we can move forward with consensus of how to drive curative research forward from a funders perspective.

Again, that's good news.

I did notice there are things on the cure map that are not cures and are known not to be cures- sound therapies, complementary and alternative therapies, diet, exercise, psychological treatments, multimodal treatments.

Personally, I think TRI ought to up the game as far as criteria for accepting abstracts and not allow any of those things to be presented at the research meeting. Instead time could be spent in subgroups, workshops, breakout groups, task forces defining the research questions and debating the best way to answer them-- what are the best animal models, what are the therapeutic targets, objective measure etc, etc, etc.

Many thanks for taking your own personal time to come to Tinnitus Talk and give us your insights. It's very much appreciated.

I think there's a slightly different challenge. The trials that fail don't get presented or written up - which is a concern in itself. Almost all research presented at TRI/ITS shows a slight/moderate improvement. Makes you scratch your head as pretty much everything seems to work a little. The acupuncture papers are particularly interesting. It seems whatever the 'active' type of acupuncture is that's being trialled works slightly better than the control. Really demonstrates the challenge of researching in tinnitus.

The journal of unpublished results has been around for quite a while. The clinical trial registry was supposed to help avoid that. I guess no one enforces the requirement for posting results. If TRI really wanted to examine a failed trial they could invite the investigator and do one of those- what worked well, what didn't work, what could we have done differently exercises in a workshop setting. Those exercises can be extremely useful. I doubt Matteo De Nora would object to his money being spent on that.

Acupuncture is complementary therapy so one would not expect much of an improvement.

What is the plausible mechanism by which anyone would think acupuncture would work on tinnitus? Magic? I'm not even sure why BTA would even care about acupuncture at this point.

The challenge in researching tinnitus is that the cart is coming before the horse- alternative and complementary and psychological therapies are coming first. It should be the medical treatment first and the others added on.

TC

 

[Steve]

Instead time could be spent in subgroups, workshops, breakout groups, task forces defining the research questions and debating the best way to answer them-- what are the best animal models, what are the therapeutic targets, objective measure etc, etc, etc.

That's actually something that @David has discussed before. A conference that has ideas, where you encourage people from a lot of different backgrounds to come with thoughts, innovations, questions... There are no engineers at conferences, no problem solvers from other fields. Who knows what people from different disciplines may think on how to approach the whole area with its particular problems.

I'll make special mention of plumbers (that's just for David )

 

[David]

I did notice there are things on the cure map that are not cures and are known not to be cures- sound therapies, complementary and alternative therapies, diet, exercise, psychological treatments, multimodal treatments.

Yes it's kind of doing two things at the moment. 1. Is to identify a route. 2. Is to map all research. Would want to heat map it at some point to show where the majority of research happens and where the deficits are.

not even sure why BTA would even care about acupuncture at this point.

To be clear we're not. I've read some of the papers. Just using it to illustrate my point.

The challenge in researching tinnitus is that the cart is coming before the horse- alternative and complementary and psychological therapies are coming first. It should be the medical treatment first and the others added on.

Because they can help SOME, the treatments are there and ready to go. Minimal wait time/investment needed. The medical treatments need a target. This still eludes us in tinnitus. When potential targets emerge then medical companies do and have invested.

I'll make special mention of plumbers (that's just for David )

Yeah. Think I lost the room at plumbers!

 

[TuxedoCat]

That's actually something that @David has discussed before. A conference that has ideas, where you encourage people from a lot of different backgrounds to come with thoughts, innovations, questions... There are no engineers at conferences, no problem solvers from other fields. Who knows what people from different disciplines may think on how to approach the whole area with its particular problems.

It's worth a try. I have to say in my experience tho, that type of interaction works best when a product is being designed to address a certain need or you're brainstorming new claims for a brand.

Tinnitus needs some serious research and instead of engineers, you might look to have a mix of the clinical sciences (MDs from ENTs, Psychiatrists, Neurologists) and non-clinical biomedical scientists from similar fields, maybe even some nurses with advanced training in Neuro or Psych to balance things out.

Also, the group dynamic has to work, some physicians and PhDs need an attitude adjustment. When you have the right mix of people it can be productive and even be fun at the same time. -TC

 

[WaqasVic]

This device (Neuromod) will be like glasses for ears

 

[JaneFromBoston]

@Starthrower,

Sadly the response to the video from Tinnitus Talk members and the Tinnitus Hub Facebook Group members is very poor. Response on Twitter is poor as well.

For example: Tinnitus Hub on Facebook, 600 views on the video (low compared to other videos), and only about 10-12 reactions.

Well, maybe you're going to get some delayed reactions. Sometimes we look at these things on the run. So now that I'm set at a computer, I liked it very very much. It was extremely well done and here I am back to get more info, as they said it would take a while to really make all the info available, which makes perfect sense. So add one YES vote.

 

[Karen]

I just watched the video, and this information really gives me hope that one day soon, there will be a cure --- or series of cures --- for tinnitus! Thank you to all who participated in the conference, and I look forward to hearing more about what you learned there.

 

[Jack Straw]

Still waiting for the follow up videos! Or did I miss the link to the other ones?

 

[Markku]

Still waiting for the follow up videos! Or did I miss the link to the other ones?

You did not miss anything, they are still coming. A slowing factor has been getting the actual raw footage we need to create the videos. A significant part of the conference and expo was recorded by someone commissioned by the BTA, and we have had to have meetings and discussions on this topic, to figure out the legal and technical aspects.

We should be receiving around 80 gigabytes of raw footage within the next 2 weeks. Following that, we need to internally figure out what parts we would like to use, what our members and visitors might want to see. We are going to write a conference and expo report as well - the raw footage will come in handy for that, to refresh our memories. Finally, we need to edit the footage and create something cohesive.

And we also need to make sure that people featured on the videos are OK with being featured.

Overall, it is a lot of work that goes into something like this behind the scenes. However, I would be slightly disappointed if we didn't have the majority of this work completed and published in a month's time. Let's see!