Reflections on Tinnitus Research 2018

Attached here is a video we did recently, with me and David Stockdale of BTA, discussing tinnitus research across 2018.

We were (belatedly) picking up on the TRI conference and on different things happening in research this year that grabbed our interest.

This was unscripted so it's just a general chat and not intended to cover every single point of every single treatment. It's the things that stood out for us particularly this year, and is personal opinion rather than any kind of representative policy.

 

Now I know what I'll be watching tonight Thank you all.

 

I have watched it last night
Neuromod also shared the video online.

 

It’s insightful, engaging, and honest. Thanks for the enormous effort that goes into making videos like these, and for attending the conferences. It comes across really naturally and nothing is forced, clunky, or rehearsed. It gives relevant information on the emerging ideas within the tinnitus field.

So, thank you @Steve and @David. Also, @Markku deserves a lot of credit for the countless hours he has put into editing this, as well as the other videos, Q&As, etc. @Hazel has also put an enormous amount of energy into all this too; it’s all done so selflessly by everyone involved which I find incredible.

I tip my hat to you all. Awesome stuff.

 

I very much enjoyed this video, especially the last half discussing Pharma. Especially encouraging is David Stockdale's understanding of what it is that Pharma wants to see and I'm led to believe that BTA will take up some role in pushing that as a research agenda- is that correct?

I recently listened to ATA's podcast with Dr. Phillip Gander from University of Iowa. I believe he alluded to Fatima Hussien's work with fMRA and now having heard David mention it again will be looking to learn more about it.

Thanks very much Steve and David for representing the tinnitus community the way you do. Thanks Markku and Hazel for all the behind the scenes work that's made it possible to bring us this top level research summary. I hope it becomes an annual thing.

TC

 

Hi @Steve

You mentioned Will Sedley in the video- is he still actively researching tinnitus? I know he's a spokesperson for BTA and on their PAC. What else is he doing these days?

Thanks, TC

 

Yes he is still actively researching tinnitus.

He doesn't have the greatest of resources to call on so his work isn't progressing as fast as I would like to see. In the field of tinnitus he is one of the researchers that excites me the most. I completely get the prediction model and it feels like it needs a lot more attention.

I know that he has ideas in the works but that he only has so much time to progress them.

 

Hi All,

as I said in the video happy to get involved in discussions that lead out of it and thank you for the positive coments so far. To reiterate what @Steve has already said. What I say in here is personal opinion and am sure you'd get a different take if Steve had someone different from the BTA sat beside him.

Yes, we're doing that and hopeful of having a paper published early next year furthering this.

I've re-read it, to be honest, still don't fully understand it but it is presenting a new concept and way of using fMRI that may lead to an objective measure - but the one in the paper doesn't appear to be quite there.

Had a catch up with Will on Friday. As Steve says, he's working 2 days a week as a researcher and the rest within the NHS. Tinnitus is his primary research interest and he's looking at securing additional funding to work on ideas coming from his proposed model.

 

Music to my tinni ears. Both BTA and ATA have roadmaps but no one is driving the bus, until now that is!

 

Thanks for the video and the effort, it's something that is needed to spread information and highlight researchers and their work in easy to understand form by everyone which results in promoting curative research. You never know who is watching it.

It's good that @David explained what BTA tried to achieve by using available funds the way that they were used in the past, and after watching this video we can see that David and the BTA are trying to do something behind the scenes to help curative research. I still don't like donating to CBT and similar things and I'm not happy about that, but donating to basic science is very good thing when you can't donate millions to drug development. It's something that can help pharma and researchers at some point when they will do their research, or maybe even inspire them to do so. Every difference is a difference, and small difference can cause big difference.

Maybe thanks to being open and honest in unscripted talks like this BTA will get more donations, people just want to know what they are donating and how the funds will be used. And by that i mean what is in the head, what is the concept of helping the cause for people that will spend that funds later. They want to trust and it's very hard to achieve.

ATA should also be open like this, sadly I think that XXI century isn't yet there with ATA.

What also makes me happy is that @Steve and the rest of the team really try to make a difference by gathering information from various sources and spreading it to the public making tinnitus research and you know everything looks more Professional. It's good for everyone when you can show content like this to people that are "outside" of the tinnitus world, this video is something that you can show to anyone even your doctor.

I think that it would be nice if Steve and David talks would happen in the future because it's nice to watch and it makes BTA look more patient friendly. Maybe after events and expos in the future or when something to discuss will emerge.

Good work!

 

I agree!! I have not had the time to listen to the entire conversation yet. But @David comes across so real and caring and without what I experienced with the ATA's constant changing of the guard so to speak regarding the EO's position within that organization.

The egotistical mindset with regards to someone like @Steve would never happen.

This would be a great fundraiser to focus on in the near future.

 

You guys are two of the most genuine people I have seen.
Thank you for all that you do.

 

Excellent work.

 

Thanks for the subtitles! Non-native speakers will benefit a lot from it!

 

From what I read online about tinnitus and everything it associated with I understand not that many countries are working on it (unfortunately) and I do hope that at least they could've chipped in in whatever Neuromod and Frequency Therapeutics are working on to speed it up (or help) for I am sure every out of 200 countries would benefit out of it. I wonder what's going in this regard in Japan for example, are they (private or public companies/institutions) working on anything... I hope they do. I understand about some poor countries and what not but what's going about in France or Holland or Sweden... So sad about it because I guess I know the answer.

Now I do know that Josef Rauschecker and his lab (or team) is working on tinnitus for 10 years now but I guess I missed on where exactly his team is at now? Is it the same as Frequency Therapeutics is on, just a different drug or way or method, or similar to Neuromod or what?

And another thing - from the Josef Rauschecker interview the other day I realized that whoever is working on tinnitus and such are not talking to each other (unfortunately).

I think if they would be on the call at least once a month on the major stuff we'd find a cure faster. It's like different groups are trying to find something in the hay but no one informs others or no one is interested to know. Why wouldn't they?

Oh I see, secrets, profits... If not then why wouldn't they?? I guess I just feel sad that this way we won't see anything good for another 15 years if anything. I hope I am so wrong about it.

 

I'm not sure that a meeting once a month between all tinnitus researchers is either useful or practical. First it would be extremely difficult to perform. There are several annual conferences that are organised already and they each take a lot of time, at least a whole day and sometimes several days. This approach would have taken a lot of time from every researcher. Time that would be taken from their work.

It would also be not the best for the outcome. Mostly due to the fact that it could lead to everyone investigating pretty much the same thing. A thing that commonly happens when groups gather and agree to do one thing. But suppose that thing was the wrong one?! It is best if separate teams focus on their hypotheses. The more different approaches the higher probability that one is going to hit the jackpot.

 

But they are taking the scenic route through management strategy land.

 

I know. I think I may have been overly optimistic when I wrote that. This business with the comedian has opened my eyes. There was more than one conversation here about not trivializing tinnitus. I feel like BTA didn't listen. They are also still spending money on unnecessary studies - like one on sleep. There is a standard, proven protocol for sleep therapy, any therapist could modify it for a tinnitus patient. Another study is not needed.

What BTA needs is a lot of money and a good, ambitious science liaison who can talk and strategize science to other scientists. Their so-called roadmap is like a map of the Los Angeles highway system - easy to get lost and then choke on the pollution.

Forget ATA, they play their cards close to the chest, we'll never know what they are doing, only that it's the same thing they've been doing year after year. Isn't that the definition of insanity?

All right, I'm getting myself depressed.

Do you have any cheery thoughts?

 

99 percent of BTA and ATA members are >60 years old. A large part of BTA's income comes from old people dying (wills). BTA knows the internet-based tinnitus community doesn't fund their work. It's the old people attending their support groups that fund their work. That's why BTA doesn't give a shit about you and me wanting them to change.

 

Yeah, my two year old was running around this morning pulling out his peninsula and going "pee pee pee pee pee pee" and I was instantly trying to explain to him not to do that especially at preschool. That's certainly something I've never seen him do before and I didn't teach him that.

 

ATA 's too. ATA is sitting on a million dollars that was left to them a couple of years ago.

I'm an American and so the fact that the online community is international probably doesn't help either. Unless things have changed, BTA doesn't support tinnitus research outside the UK. Hypothetically speaking, if the best tinnitus research was being done in outer Mongolia why should location stop anyone from supporting it?

That being said, I still think BTA do an excellent job engaging the tinnitus community in the UK and are very open about what they are doing, even if we don't agree.

BTW did you see that there have been 1,000 views of Jazzer's story?

Best, TC

 

By the way I like the quote from your avatar.

In lots of European countries tinnitus associations are structured as "clubs", with president, cashier and secretary being by federal law the top (or fundamental) functions of the club.

In my country the tinnitus association's cashier's main occupation is body therapist. People who come to the help desk are told "if you want to lose your tinnitus you have to do something about it yourself, if it doesn't go away it's your own fault, you can't let go" and of course you can pay for the professional therapy hours, but if it doesn't work, it's your fault.

So I can't judge about the ATA or BTA, but some other associations are pretty messed up!

To me CBT / Habituation seems like advertising resignation!

 

The medical field is heavily data driven and I'm not really anyone important so I can see why they would ignore Dr. Shim. That's too bad though because my tinnitus is a frail whisp of what it used to be. I already feel like I have my mind back and my quality of life is now quickly returning to what it used to be.