Tinnitus Research Initiative (TRI) 2018 Conference

[Steve]

I have to say, this TRI kinda sucked. Hopefully the next one's better.

I don't know what you're expecting, the chance that someone is going to come along and say "hey, I've got this thing cracked, cancel day 3, lets go for a beer" is slim to zero.

I really feel a big difference in this conference compared to the last I went to. Big things are happening, but behind every great discovery is a huge amount of work. The work for me is heading in the right direction. and there are potential innovations on the horizon. Yes I am always going to say that more needs to be done but I will probably be saying that until there is a cure presented.

I have been honest in my write up, I don't get why you think it was a bad conference. I am personally enthused by it and came back with a mind full of thoughts and ideas. Have you read the Will Sedley stuff?

 

[Steve]

@Steve Thank you for another detailed informative report. I read the two links that you provided and found that their thoughts are similar to some of my non professional wonderments.

I'm been reading that notch sound matching may now have a greater importance if pared with new discovered research that crosses into many areas. Some say that exercise and notch therapy may have potential to lower perception over a period of time. I know that you know a lot about notching and you also exercise. From what you learnt at (TRI) would you say that notching is still a top method for some or many.

That's one thing that struck me too. Even though I struggle to get my head around a lot of it the direction of the work makes sense. If it translates down to those of us without the knowledge to understand it then maybe it really is onto something.

Last night before bed I was playing with some ideas on 10Hz amplitude modulation. Using an envelope for the sound rather than LFO (Low Frequency Oscillator) to modulate. When I matched up 3 of my tinnitus tones it had a big effect in pushing the sound right back. Nearly silence. And for someone who has had it for as long as me that was interesting. It comes back of course, but what is the longer term effect and do we test random bursts or have user controlled bursts?

Notching is the inverse but I also believe in the approach. It definitely helps some people. We need more testing of multiple interventions. I want to do that on TT, in the course of time.

I am working on a theory based on the prediction model but I need to play around and test out a few ideas first. I want to do something with more universal efficacy but it does seem to be more powerful when matched to the tones we hear.

Of course, there are non-responders to audio. In these cases maybe we can say that there is a definite cause (physical for example) that can't be treated in this way. If we took the prediction model then, in my reading and understanding, we have to say that the right audio should be able to treat everyone with subjective non-pulsatile tinnitus.

 

[threefirefour]

I don't know what you're expecting, the chance that someone is going to come along and say "hey, I've got this thing cracked, cancel day 3, lets go for a beer" is slim to zero.

I really feel a big difference in this conference compared to the last I went to. Big things are happening, but behind every great discovery is a huge amount of work. The work for me is heading in the right direction. and there are potential innovations on the horizon. Yes I am always going to say that more needs to be done but I will probably be saying that until there is a cure presented.

I have been honest in my write up, I don't get why you think it was a bad conference. I am personally enthused by it and came back with a mind full of thoughts and ideas. Have you read the Will Sedley stuff?

Yes I assume you've been honest. I'm not going to shoot the messenger.

The reason I'm unimpressed, aside from Susan Shore not showing up, is the fact that we spent way too much time on the CBT/TRT crap. You said in an earlier comment that it's proven to work in a large portion of tinnitus sufferers (which I don't doubt). If that's the case, then why circlejerk over something that was stale for 30+ years when it's the Tinnitus RESEARCH Initiative? It should be focused 100% on a treatment and research for that. The TRI should be a spotlight for these fledgling researchers trying to bring forth functional treatments. Not bigwigs like (((Jastreboff))) who has been old news since the 90's. The TRI may not have taught us much, but it DID show us the disconnect between the tinnitus sufferers and the researchers. How can we expect for mainstream research to care about tinnitus when it seems, a lot of OUR OWN RESEARCHERS don't seem to care? Perhaps CBT/TRT research didn't make up the lionshare of the TRI, but any amount is too much.

Yes, it's effective on some people, we get it. We just don't care. Time to move on. Bring in the treatment/cure research, and lets focus on that from now on.

 

[Steve]

@Steve thank you for the report. I just want to say that if you can make the surveys in a sort of app form, you will I think have an even higher chance of compliance.

I also think it might even increase the population that would download the app and do the surveys. Maybe they should come with the Tinnitus Talk app?

Totally agree. At the moment we use Survey Monkey, it is mobile responsive but it could be a lot better. We have a wish list of things and even contemplated designing out own survey software - though we have too many projects already and it takes a bit of time and money.

We may be able to do it at some point in the future, hopefully not too distant.

 

[Steve]

Yes I assume you've been honest. I'm not going to shoot the messenger.

The reason I'm unimpressed, aside from Susan Shore not showing up, is the fact that we spent way too much time on the CBT/TRT crap. You said in an earlier comment that it's proven to work in a large portion of tinnitus sufferers (which I don't doubt). If that's the case, then why circlejerk over something that was stale for 30+ years when it's the Tinnitus RESEARCH Initiative? It should be focused 100% on a treatment and research for that. The TRI should be a spotlight for these fledgling researchers trying to bring forth functional treatments. Not bigwigs like (((Jastreboff))) who has been old news since the 90's. The TRI may not have taught us much, but it DID show us the disconnect between the tinnitus sufferers and the researchers. How can we expect for mainstream research to care about tinnitus when it seems, a lot of OUR OWN RESEARCHERS don't seem to care? Perhaps CBT/TRT research didn't make up the lionshare of the TRI, but any amount is too much.

Yes, it's effective on some people, we get it. We just don't care. Time to move on. Bring in the treatment/cure research, and lets focus on that from now on.

I get where you are coming from. I can't do anything but agree, although I will acknowledge that learning more about the psych approaches will help us in the long run to understand more about tinnitus. And also I have to personally acknowledge that we need good groundwork to develop a cure, however much some of that groundwork lacks in excitement.

Research can be held back by the old guard but there's no reason that it has to be, it's all a matter of working with an open mind.

What do you think should happen to push things forward?

Not a trick question or a calling out, but a genuine interest. In fact I would ask the question of everyone reading this thread. What would you do or what would you like to see happening in research?

 

[threefirefour]

I get where you are coming from. I can't do anything but agree, although I will acknowledge that learning more about the psych approaches will help us in the long run to understand more about tinnitus. And also I have to personally acknowledge that we need good groundwork to develop a cure, however much some of that groundwork lacks in excitement.

Research can be held back by the old guard but there's no reason that it has to be, it's all a matter of working with an open mind.

What do you think should happen to push things forward?

Not a trick question or a calling out, but a genuine interest. In fact I would ask the question of everyone reading this thread. What would you do or what would you like to see happening in research?

Those are great points. Also I'll point out that I don't think that the inability to progress past CBT/TRT is a lingering paradigm, and not some ignorance of the researchers. I'm sure given the ability, they would move on too.

Learning more about the psych would help us, but there's more facets to Psychology than one. Here we're talking about the physical alterations of the brain, and coping mechanisms. Further establishing one won't bring us closer to the other. Focusing on coping mechanisms is bringing us no closer to a cure for tinnitus. Apples to oranges. So it's not groundwork for a cure.

Research can and is being held back by the old guard, and without reason. The reason is because they are still the only established way forward. My suggestion, and what will likely happen anyways, is we need *some* sort of treatment for tinnitus. When that happens we get our foot in the door, and all research that wishes to compete will have to try to treat the underlying cause to compete. The way to get rid of the CBT dinosaurs is to thoroughly make them Obsolete.

 

[brummygirl]

What do you think should happen to push things forward?

Not a trick question or a calling out, but a genuine interest. In fact I would ask the question of everyone reading this thread. What would you do or what would you like to see happening in research?

Well, my general wish would be for bigger trials with enough participants in clearly defined subgroups for the results to be mathematically valid for each subgroup - without the need for more trials! Ie more money, I guess!!

That deals with the speed and subgroup problems, maybe.

My specific wish would be for more researchers to work in the same area as Sarah Michiels on therapies for tinnitus connected with damage to the TMJ and neck. Currently some people get rapid relief from Physio/ chiropractic work while others spend years trawling through numerous therapists working in the dark.

 

[Autumnly]

For me personally, the Translational Hearing Loss Summit felt more focused on research and finding 'actual' treatments / a cure. Autifony's pipeline doesn't mention tinnitus or hearing loss (only 'hearing disorders') but the presentation given by its CEO showed that they're looking for treatment options for those two conditions. There was also a panel discussion ("How to accelerate the development of biological and pharmacological treatments for hearing loss and tinnitus?") and while I don't know how successful those discussions usually are it's still nice to see people from different companies coming together and talking about accelerating research.

Some presentations that sounded interesting under spoiler. Though they probably didn't share any new information or secret breakthroughs it's reassuring to see those companies continuing to look for a cure.

Spoiler

• Atoh1 gene therapy for hearing loss - preclinical and early clinical development -Dr. Richard Colvin, Novartis
• Developing drugs for central hearing loss and tinnitus -Dr Charles Large, Autifony Therapeutics, UK
• Targeted drug delivery to treat hearing loss disorders -Dr Alan C Foster, Otonomy, USA
• Developing stem cell therapies for the treatment of hearing loss -Prof. Marcelo Rivolta, Sheffield University, UK
• Magnetic Delivery of Therapy to the Cochlea -Dr Benjamin Shapiro, Otomagnetics, USA

My suggestion, and what will likely happen anyways, is we need *some* sort of treatment for tinnitus. When that happens we get our foot in the door, and all research that wishes to compete will have to try to treat the underlying cause to compete.

I agree. If there was just one medication or device that could reduce tinnitus for a subgroup of sufferers longterm (without heavy side effects) it might lead to an increase in tinnitus awareness/tinnitus research overall and perhaps accelerate the development of future tinnitus treatments.

 

[Steve]

Well, my general wish would be for bigger trials with enough participants in clearly defined subgroups for the results to be mathematically valid for each subgroup - without the need for more trials! Ie more money, I guess!!

This is very important. Right now, with frankly tiny sample sizes it can be very easy to progress down a completely wrong path. With larger samples we can know for sure if there is an effect. I know that we can do more via TT and the wider community on this (for some things, not everything).

@threefirefour I feel that research into CBT is at saturation. It is worth researching to improve what is there but I don't see how much more can be done otherwise. We already know a lot about it.

If there was just one medication or device that could reduce tinnitus for a subgroup of sufferers longterm (without heavy side effects) it might lead to an increase in tinnitus awareness/tinnitus research overall and perhaps accelerate the development of future tinnitus treatments.

I think it would need to be something that ameliorated tinnitus. You can argue that we are already able to reduce it, at least trials do show reductions for various things. That one thing that stops the brain from creating or interpreting the signal would be amazing, however few people it worked for.

It would have been nice to see more Pharma involvement at the TRI conference, maybe the difference is that with hearing loss we know what we are trying to target, whereas with tinnitus we don't have a defined route. Could it be potassium channels, the parahippocampus, the vmPFC etc etc..

 

[Bart]

I am enrolled in a clinical study that will use a combination technique of TRT and EMDR, it will include 5 sessions of TRT followed by 5 sessions of EMDR over a period of 3 months , after this period there will be another 3 months where they will evaluate things and do follow ups , some of the top tinnitus experts in the field are involved in this project and the study is completely funded by the Belgian government , it is not an experimental technique and it definatly shows some promise from what i have been told. 166 people will be enrolled for this study.

Yesterday I had my first intake sessions and they will contact me soon. I will try and keep you updated .

 

[brummygirl]

That's really interesting @Bart . I hope you find it beneficial.

Who is running the Research project?

 

[Hazel]

Hi @Bart, that's interesting. I know that EMDR is proven to be highly successful in treating things like PSTD and phobia's. I wasn't aware it has also been used successfully to treat tinnitus. Do you know if there is any literature on this?

 

[InfiniteLoop]

@Bart

What is EMDR? Why 5 sessions of TRT should make any difference since people usually have to TRT for a year to see results?

 

[Steve]

@Bart

What is EMDR? Why 5 sessions of TRT should make any difference since people usually have to TRT for a year to see results?

In this post #74 I put a picture of the device. They presented some interim information and discussed the study. It is an interesting looking approach, I guess they are using TRT because they can compare results to TRT alone and then see how much more effective it is combined with EMDR.

 

[threefirefour]

I am enrolled in a clinical study that will use a combination technique of TRT and EMDR, it will include 5 sessions of TRT followed by 5 sessions of EMDR over a period of 3 months , after this period there will be another 3 months where they will evaluate things and do follow ups , some of the top tinnitus experts in the field are involved in this project and the study is completely funded by the Belgian government , it is not an experimental technique and it definatly shows some promise from what i have been told. 166 people will be enrolled for this study.

Yesterday I had my first intake sessions and they will contact me soon. I will try and keep you updated .

So why is it that we have resources for this crap but not actual tinnitus research?

Anyways, thanks for enrolling in a scientific experiment, even id I disagree with it. This behavior is crucial to the advancement of progress. Yes please keep us updated.

@Bart

What is EMDR? Why 5 sessions of TRT should make any difference since people usually have to TRT for a year to see results?

EMDR is a pseudoscience based on using eye movements. The idea is essentially to use eye movements to retrain people to cope with disabling memories.

 

[Bart]

@brummygirl The clinical study is being lead by Professor Van den Heyning and the UZA hospital in Antwerp, it is conducted by established audiologists and clinical psychologists .

@InfiniteLoop Not necesarily, it might take a year or less to see results but during that timeframe you rarely have more than 5 counseling sessions, most of the therapy is homework so to speak with the use of noise generators .

@Steve Indeed Steve, they want to scientifically prove what works and does not work, they use this combination technique for awhile now with some succes, the psychologist said that they only had 1 patient so far who did not see a positive change in his tinnitus, the device you posted is indeed the device they showed me yesterday.

 

[Joe Bananas]

Nothing to add here except expressing my admiration for the energy you put in this and a big thank you for sharing it with us @Steve

 

[Stakovic]

We are in 2018 and we still talking about TRT

 

[Hazel]

EMDR is a pseudoscience

It's really not. There's a lot of evidence that it works. Whether it works for tinnitus, I don't know, but it's a proven method in treating PTSD and certain anxiety disorders.

 

[threefirefour]

It's really not. There's a lot of evidence that it works. Whether it works for tinnitus, I don't know, but it's a proven method in treating PTSD and certain anxiety disorders.

You're mostly right. I was too quick to demonize it as quackery, because I've become extremely skeptical of therapies used for chronic conditions (you can't really blame me). However, the evidence it works is marginal. My original position was that based on reading about it's premise, it sounded riduculous. After reading it, it sounds better, but still not as good as other therapies.

There's been studies showing it's better than nothing, but studies showing that it's not as good as traditional exposure therapy. Make of that what you will.

 

[threefirefour]

We are in 2018 and we still talking about TRT

At least most of us dislike it now. A few years ago this would have been very different.

I hope that by 2020, we're still talking about it, but in the sense of "remember how terrible TRT was? Thank goodness we have a treatment now".

 

[brummygirl]

Yes, we went through a rollercoaster of expectation and disappointment with TRT. It put my son off talking therapy in general in a big way, unfortunately.

 

[Bart]

Small update, just received an email and they will start on the 17th of April.

First session will just be audiologic testing and an ERP (auditory event-related potentials), to see how the brain processes sound and responds to certain inputs and what part of the brain has increased activity due to the tinnitus, they do this with electrodes placed on your head.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/0470018860.s00486

 

[Starthrower]

I went through EMDR therapy years ago for PTSD. However, the device pictured in Steve's post #74 was not in use. I still had very intrusive tinnitus at the time. The therapy involved reliving the "event" over and over and over until one's reaction became - like talking about the weather. No emotion or hardly any at all to the actual "event" when talking or thinking about it. It de-senses the person in a weird way.

I am not sure how it would apply to tinnitus alone. But would be interested in finding out the results!

The most important factor is to make sure one has a qualified therapist. I had one horrible experience with an unqualified therapist and it left me in the fear stage. I remember trying to drive home and after reliving the horror over and over it was still there. I had to pull over and call my husband to pick me up.

Small update, just received an email and they will start on the 17th of April.

First session will just be audiologic testing and an ERP (auditory event-related potentials), to see how the brain processes sound and responds to certain inputs and what part of the brain has increased activity due to the tinnitus, they do this with electrodes placed on your head.

Bart please do report back here. I am so interested in hearing about your experience.