Tinnitus Research Initiative (TRI) 2023 Conference

[Hazel]

I will respond below to some of the questions and requests above. In the meantime, note that we changed the Irish dancing photo in my post above to a video, just for fun. Interesting anecdote, they had the music so loud at this event that many complained until they turned the music down — how ironic at a tinnitus conference

Prof. Shaowen Bao will present on the influence of inflammation and TNF-A on tinnitus next week at the TRI 2023.

There has been a clinical trial on going for some time for the usage of Etanercept to lower TNF-a blood value and to lower tinnitus. Prof. Shaowen Bao's name does not appear in the clinical trial documentation. If you manage to get him on camera, could you ask his opinion on this, and whether he is involved? He is the researcher that pointed to TNF-a inflammation as a potential cause for tinnitus after all.

TNF-α Treatment of Blast-Induced Tinnitus

The talk was interesting, though to my understanding only based on animal models so far. Are you sure there's a human trial going on?

EDIT: I checked and you're right. I even met Dr. Jinsheng Zhang at the conference and got his email! Interestingly, the results he presented at the conference were only regarding his studies on rats, see attached slide. I suppose that's because the human trial is still running. To my knowledge, Dr. Jinsheng Zhang and Prof. Shaowen Bao are not directly collaborating on this topic.

I'm particularly interested in the last session 9A by Arnaud Norena, especially the trigeminal nerve involvement in tinnitus/hyperacusis and the keynote session on inflammation by Prof. Shaowen Bao.

I really liked Arnaud's talk — and I like his research in general because he's such a versatile researcher and has looked at tinnitus from many angles. His talk was interesting because he provided an explanation for certain symptoms that I often hear people on this forum complain about and never understood, like ear fullness and other strange sensations in the ear. I attached one of his slides, but have emailed him to ask whether he could share his full slide deck.

It would be interesting if you could find out a little more about somatosensory tinnitus.

Session 10B: Somatic modulation in hyperacusis and exploration of the movements that modulate somatosensory tinnitus.

I have two questions. Could you please ask them:

- Can somatic tinnitus be reactive to sound?
- Can somatic tinnitus worsen over time (increase in volume)?

Thank you very much and enjoy your trip to Dublin.

This session happened to coincide with my talk, which is why I was unable to attend. I do know Sarah Michiels — one of the speakers and a key researcher in this area — quite well. I can ask her these questions via email.

Hi @Hazel, thank you for devoting your time. One thing I've noticed is a lot of the keynote speakers and attendees are neurologists, neuroscientists and psychologists. There seems to be a lack of "inner ear" and "pharmaceutical" related scientists and researchers. It has been mentioned that collaboration is required between different disciplines (Dr. Shore, Dr. De Ridder), however the line up seems weighed towards the brain.

1) I saw an update from Prof. Peter McNaughton today, who has identified HCN2 proteins causing tinnitus and a drug, developed to block these, eliminated tinnitus in animals recently. This suggests a peripheral phenomenon exists in addition to the brain as the drug does not penetrate the brain. He works at King's College London in partnership with Nottingham University. The problem he is having is, due to selectivity, the drug is also affecting HCN4 which is expressed in the heart. This is where we need pharmacology experts in drug design.

2) The work of Prof. Nicholas Barnes at Birmingham University has shown 5-HT1A neuronal loss in the DCN. He is developing a drug.

3) Development of middle ear implants to provide electrical stimulation to the inner ear has shown strong results in pilot studies.

It would be interesting to hear what the thoughts of researchers are on these areas of progress. Dr. De Ridder had no idea of the first two, and I wonder if this is universal. Researchers are discovering and working in isolation and this knowledge is not being shared. I think this is a MAJOR issue! It may be a good idea to see what level of knowledge researchers have of these findings.

The key is then linking up people who work in pharmacology to devise drugs and technology that target the above findings. Ann Elgoyhen is really the only researcher who has looked at pharmacology in tinnitus in detail, although not a pharmacologist by nature.

If I had not posted 1 & 2, would we even be aware of these findings?

A few thoughts on this:

• There was definitely a lot of talk about cross-functional collaboration, and even a dedicated session about this, but not much action yet.
  
  
• Regarding asking researchers what they think about development x or y — I'm afraid I didn't have much time for that. (We hope to bring more of you guys to Vancouver next year so that we'll have more manpower to follow up on all the requests from this community!) I do know from experience though that most researchers only know what's going on in their particular niche.
  
  
• In addition to Ana Elgoyhen, there is a Brazilian couple that has for many years been testing existing FDA approved drugs for efficacy in treating tinnitus, you can find more about their work here.
  
  
• With regard to HCN2 and other potential drug candidates — e.g., the TNF alpha blocker discussed at the conference — these are just animal studies so far, which is basically the case for nearly all new drug candidates for tinnitus. We know that 90% of drug candidates do not survive the transition from animal to human models, and I wouldn't be surprised if the odds are even worse for tinnitus; not to mention that the process can take decades. None of this is meant to discount your comments about the need for pharmacology, which I agree with. I just mean to provide some context for those who tend to get their hopes up when hearing about animal studies.
  
  
• I agree that electrical stimulation to the inner ear is promising. In addition to Dr Djalilian — whom we interviewed for the Tinnitus Talk Podcast — Kelly Assouly (former TIN-ACT student now working for Cochlear) has done some work on this (although that's a bit different because it's specific to cochlear implants) and there is a German group working on something similar and the Mayo Clinic is doing a trial as well. So definitely an interesting and active field, but indeed not discussed at the conference at all. Kelly Assouly was however at the conference and she remains interested in this; she is trying to put together a business case for Cochlear to invest more (or more directly rather) in tinnitus treatments.

I wonder if you might slip in a word about sub-types of tinnitus, per the conversation with Dr. Michael Golenhofen. After listening to his very thoughtful comments, it seems pretty clear that clinicians are just about clueless when it comes to having an informed and informative discussion with a tinnitus sufferer about tinnitus sub-types.

There weren't many clinicians at the conference (although Dr. Golenhofen was there!) but I did mention specifically in my talk the need to do deeper analysis on clinical trial results to find out why certain treatments only work for certain groups of patients. It's a pet peeve of mine that they're presenting all these trial results at the conference, always with a note of "well, we had this group of responders and this other group of non-responders but we don't know why".

I've got no problem funding CBT practitioners for tinnitus. I have a MAJOR problem funding CBT research into tinnitus.

That's exactly my view, and what I told these psychologists too. I am actually a firm believer in offering psychological counseling to anyone who wants it, whether for tinnitus or any other reason. Research priorities are however a whole different ballgame!

Did they mean that transferring the funds earmarked for these pointless and frankly stupid psychological Clinical Trials (like trying to determine precisely to what extent this brought people to dangerous suicidal ideation) to Real Research would somehow deprive sufferers of the wider availability of CBT?

I believe that is indeed what they were suggesting, though I still fail to see the link myself!

Hello @Hazel,

What did you think of this 2023 conference compared with previous years?

Compared with previous years, do you feel that doctors/researchers are close to finding effective solutions?

Do you feel that doctors have a better understanding of tinnitus and especially pain hyperacusis?

If we compare 2023 with 2019 (Taipei), has there been a great deal of progress?

It's a hard question. Indeed the last major TRI conference was in 2o19 in Taipei. I can't really say that we've progressed very much since then, in the sense of any major breakthroughs. There's definitely a lot of new work in many areas like neuromodulation, electrical and magnetic stimulation, animal models, and much more. But so far, it's all just pieces of the puzzle. I will say that hyperacusis is definitely getting a whole lot more attention now than a few years ago.

 

[gameover]

Just shows how medieval the science is when it comes to brain disorders. Maybe in 50-100 years they'll figure out something.

 

[EDDTEKK]

It's very disappointing indeed. No breakthrough seems to be coming in the next decade. Research is still in the early stages.

Think about cancer. They still can't beat most forms of it. Brain issues are much more complex... so sad.

There are too few tinnitus researchers and they don't have the funding to move forward.

 

[Nick47]

It's very disappointing indeed. No breakthrough seems to be coming in the next decade. R

@EDDTEKK, have we not recently had a breakthrough (Dr. Shore's device)? Plus, there are ongoing trials (TNF-a, Pimozide, SAGE-547) taking place.

 

[EDDTEKK]

@EDDTEKK, have we not recently had a breakthrough (Dr. Shore's device)? Plus, there are ongoing trials (TNF-a, Pimozide, SAGE-547) taking place.

Oh, sorry. Yes, you are right. Dr. Shore's treatment might be a breakthrough! We need to see it in the real world.

I was referring to the attendees at the TRI 2023 conference.

 

[Joeseph Stope]

My take on the Tinnitus Research Initiative 2023 Conference's closing lectures

Where to begin? Well, short story long, I recall nearly twenty years back, at the University of Galway, they used to invite someone from out there in the world at large -- away from academia -- to give a talk in the evenings ca. 21:00.

My interest was awakened when I heard that Colm O'Gorman, quite a charismatic speaker and a survivor of child abuse, was going to speak on the panel about child-abuse, institutions, clergy etc. Big disappointment then when, pretty tired after the day's stint, waiting and waiting -- and he never showed up. The second speaker went on and on about the awful time he had and the abuse he received from clergymen and although he had all our sympathy, he just couldn't raise the spirit of either me or most of the audience. I was tired, I was cold, I was hungry and was waiting for him to wind up I could slip out unnoticed and go home. (The next speaker was a black lady). So when the speaker finished up I was 4th or 5th out the door (leading the stampede).

Well, once I was out the door, I realized... I just couldn't do this. Noblesse Oblige etc., and I went back in to the 3/4 empty auditorium to hear the black lady's speech dealing with her time growing up as a black child in an orphanage run by nuns. The moral of all this: Well if I ever get to heaven, it will be because I went back in those double-doors and took my place so that she would be talking to an audience of twenty one instead of twenty.
And the lady was good. She kept it short, she went straight to the point and she connected to the audience.

It was somewhat similar at the Tinnitus Research Initiative conference. The organizers chose an auditorium which had sound-proofing on three sides, so although I could physically hear the sound of the lectures, the to and from of the questions at question-time was audible but muffled and hard to follow. The speakers dealt with an amazing range of topics -- kind of distant from the subject of tinnitus... such as the power of dance and the El Camino pilgrimage in Spain, the benefits of participating in a choir, the value of involving the tinnitus sufferers in with the community to make themselves visible and heard, CBT... and while I was sitting at the back like those members of the Muppet show... Waldorf & Stadler? I can see the value of it all and I got a good view of how the machinery of the Tinnitus Industry and how it's components actually work.

The dance, choir, and other lectures in this vein are so as to lift your spirits and help you get on with things (well, as we all know, there is no cure), and these are good for loadza things like obesity, depressions and such-like. Getting involved with the public, getting visible so as to put pressure on politicians to increase funding was also a valuable lecture.

This lady who gave a talk about Dementia raised the somewhat scary topic of the connection between dementia and hearing loss and perhaps it would be an idea to consider hearing aids. Whether there was a connection between dementia and tinnitus, she left open to the audience.

One big avalanche of diverse topics.

The first speaker, Berthold Langguth, a German speaker, gave a run-down on neural pathways and such-like, which was a bit above my head. But I consider that the researchers are the nuts and bolts of the matter. If they can locate "the loose screw" in the works that causes tinnitus and tighten it, then all of us can up sticks and get on with things.

Well, @Hazel, wittingly or unwittingly, adopted the same strategy as that black lady. It was late on a Friday afternoon, people were tired and wanted to get home, I noticed the Spanish dancer, Dr. Langguth, and many others were discreetly leaving the Auditorium and @Hazel was the last speaker on the bill. She got straight to the point, introduced the website, gave her experiences and took questions and that was that.

It was good to attend. I really hope that @Hazel didn't have to pay the (what was it, €400, €500?) for the entry to the main research lectures. I paid out €10.00 for the afternoon lectures and tea.

So yes, I would say that it was worthwhile. It's good that we show our presence somehow. If we were all to stay quiet, stay at home and suffer in silence, the men who write the checks for the research would ignore us completely.

 

[Hazel]

Thanks for sharing your thoughts @Joeseph Stope! And it was such a pleasure meeting you!

A bit of context for the rest of you, the event Joeseph attended was the public event separate from and after the main conference. It was indeed a mix of experiences from other patient advocacy groups. The only pure research talk was by Prof. Langguth, summarising key points from the research conference. I recorded his talk and we'll publish it shortly.

 

[Nick47]

Kelly Assouly was however at the conference and she remains interested in this; she is trying to put together a business case for Cochlear to invest more (or more directly rather) in tinnitus treatments.

I like this. If a big company like Cochlear get involved in extracochlear implants, then that would really speed things up!

 

[Cernuto]

I was immediately accosted by two fairly senior psychologists. They were angry. The suggestion to put less money into psychological research was like blasphemy to them. Their reasoning was a bit odd, in my opinion, because they saw a direct connection between less research and less psychological support for tinnitus patients — whereas to me, research and clinical practice are two different things, and I never suggested that psychological support should not be offered in clinical practice. They also gave me a hard time about our survey results being a "biased sample" — indeed, our sample represents those who are struggling more than average, which are precisely those whose voices need to be heard the most. The discussion was fruitless and after some time I extracted myself.

Thank you, Hazel! So glad you stood up to these gaslighters for us. The Jastreboff model is a crock, and CBT for tinnitus is another one that needs to die.

 

[Nick47]

With regard to HCN2 and other potential drug candidates — e.g., the TNF alpha blocker discussed at the conference — these are just animal studies so far, which is basically the case for nearly all new drug candidates for tinnitus. We know that 90% of drug candidates do not survive the transition from animal to human models, and I wouldn't be surprised if the odds are even worse for tinnitus; not to mention that the process can take decades. None of this is meant to discount your comments about the need for pharmacology, which I agree with. I just mean to provide some context for those who tend to get their hopes up when hearing about animal studies.

Thanks for you detailed replies @Hazel.

Yes, I am aware of translational science issues, however, with a caveat. Many of the animal studies have been done on rats. More recent work focuses on guinea pigs (GPs) as their hearing systems are very similar to humans. Susan Shore's team used GPs and the animal trial from Peter Naughton's team on HCN2 blockers also used the same animal model. They have or had a partnership with Merck, possibly for HCN2 blockers as a treatment for neuropathic pain originally.

Oh, slightly off topic, and regarding the tDCS trial run by Bas Labree, did they reveal any results? I know it was concluded over a year ago, but nothing has been published. It would have been overseen by Magdalena Sereda, who supervised Bas as a PhD student.

 

[Watasha]

Thank you, Hazel! So glad you stood up to these gaslighters for us. The Jastreboff model is a crock, and CBT for tinnitus is another one that needs to die.

CBT for tinnitus is one of the few proven treatments for tinnitus distress. That said, I don't think we need to allocate anymore research dollars there, consistent with how most on Tinnitus Talk feels.

 

[Hazel]

Oh, slightly off topic, and regarding the tDCS trial run by Bas Labree, did they reveal any results? I know it was concluded over a year ago, but nothing has been published. It would have been overseen by Magdalena Sereda, who supervised Bas as a PhD student.

I did attend that presentation and remember being underwhelmed -- not with the quality of the review per se, but the outcomes. I just don't remember any details, so I emailed Magdalena just now to ask if there's anything she can share.

On a related note, when I spoke to Magdalena at the conference she mentioned the possibility that all these transcranial treatments, magnetic or electrical, could have such varying outcomes across people simply due to the fact that people have differently shaped craniums! In other words, they might in some subjects just not be stimulating the exact brain regions they are targeting. A fascinating thought. She is trying to get funding for another systematic review to test this idea.

 

[KoolKat]

Hey @Hazel, good work! You are a pioneer in the making.

With that said, what do you think about biomarkers? Isn't that something to be super excited for? I mean after all we, in the first time in mankind history, might finally be able to see our tinnitus Or does it even matter

And, if Dr. Shore's device works really well, are you guys going to continue to go to these events? Or would you fall back until some other major breakthrough happens?

 

[DaveFromChicago]

CBT for tinnitus is one of the few proven treatments for tinnitus distress. That said, I don't think we need to allocate anymore research dollars there, consistent with how most on Tinnitus Talk feels.

When I have a tinnitus spike, CBT in its effectiveness is equivalent to expecting to put out a forest fire with a garden hose.

It's incredible how recent neurological / genetic studies have rendered Jastreboff's theories (which have not changed in 22 years) as obsolete as a B/W TV Set.

Did you know that overwhelming PTSD (which long term tinnitus can surely produce) can actually change the sufferer's genetic configuration such that a propensity for PTSD will be transferred to that person's children (this has been observed in the progeny of Holocaust survivors)?

Finally, Neuroscience has acknowledged that trauma will result in psychic scarring that is as permanent and irremediable as, for example, the lack of flexion in a knee from an accident resulting in crushed cartilage.

Trotting out all this "It's-your-fault-if-you-are not-suffused-with-positivity" rhetoric from Mr. Leigh so woefully ignores the huge research indicating that (like our bodies) what can happen to our minds so unfortunately limits its capacity for transformation.

 

[Hazel]

With that said, what do you think about biomarkers? Isn't that something to be super excited for? I mean after all we, in the first time in mankind history, might finally be able to see our tinnitus Or does it even matter

It's definitely interesting work! Having a reliable biomarker would also encourage the pharma industry to invest in tinnitus; one of the reasons they don't is because it's hard to reliably measure tinnitus at the moment. That said, we're not at the place yet where a single test could with any degree of accuracy assess whether someone has tinnitus or not and how bad it is.

And, if Dr. Shore's device works really well, are you guys going to continue to go to these events? Or would you fall back until some other major breakthrough happens?

Good question. Well, first we would celebrate of course. Then we'd need to assess whether there is still need for services like ours. My guess is that even if it would work really well, it probably won't work for everyone. So in that case, we'll continue to follow the research