Tinnitus Research Initiative (TRI) 2024 Conference

[Utdmad89]

Maybe tinnitus has a similar thing going on, and maybe fixing one could alleviate the other.

What we all want to know is how, lol.

 

[ZFire]

@Hazel, you might already have included the following observations/questions in your presentation, but if not, it'd be great if you were able to put them to the wider audience at the conference for consideration:

"How should we measure the success of tinnitus trials and interventions?"

It's really simple; tinnitus trials should include, before and after, objective tinnitus measurements.

Evidently the vast majority of researchers are going to respond by saying, we don't yet have a system to measure tinnitus objectively. OK, fine, but that being the case, I think the research community as a whole should start acknowledging Einstein's definition of insanity by doing the same thing over and over again and expecting different results. Something needs to change.

I'd like to know what is stopping researchers around the world from committing to partner with organizations like the Bionics Institute to include their objective measurement technology (even as a secondary or tertiary test measurement) in any tinnitus trial going forward. We've got to start somewhere, and that would be as good a place as any, wouldn't it?

There's also another query I have that kind of feeds into how tinnitus trials are conducted and relates to the recent research paper on cochlear neural degeneration (CND) and tinnitus co-authored by Stéphane Maison.

The paper is long and complex. It explores the idea that CND is present in normal-hearing subjects with tinnitus. The conclusion states, "We found that tinnitus status was a significant predictor of cochlear neural responses."

My understanding of how this study was performed is that the tinnitus status of each patient was known prior to the battery of tests being carried out. Unless I've completely misunderstood the method here, it seems to me this was an opportunity lost. Surely, the more comprehensive way would have been to blind the researchers to patient tinnitus status and then measure and table the results accordingly before unblinding.

I understand these are nuanced points but it's the sort of thing I'm thinking about when considering the robustness of any tinnitus trial or study.

 

[JD]

I was able to attend TRI 2024 and volunteer with Tinnitus Hub alongside @Hazel. My overall impression of the conference was that many dedicated and hard-working individuals came from all around the globe to share their thoughts and ideas about tinnitus. While none of those thoughts and ideas have necessarily led us to any definitive conclusions about our subject of interest, there were some topics discussed that I found particularly interesting:

• New research and methods in objective markers of tinnitus.
• @Hazel's symposium on patient outcomes sparked much lively discussion among the conference attendees.
• Psychological perspectives on tinnitus: in particular, a presentation by Benjamin Boecking hinted at addressing the person as a whole, not the tinnitus distress itself.
• Arnaud Noreña, Dirk de Ridder, Philippe Fournier, Hamid Djalilian, Fatima Husain, and many others presented papers suggesting exciting new tinnitus research frontiers.

I was also happy to see a number of younger researchers whose careers seem to be gaining momentum in this field. A neuroscience PhD student, Shagun Ajmera, presented a paper using fMRI data and deep learning AI technology to find biomarkers of tinnitus. Neuroscientist Emilie Cardon seems to be hard at work at finding models that would facilitate objective measures. Bérangère Villatte is working on understanding the stress response in tinnitus patients; Namitha Jain on fMRI data in response to different sounds. There were also so many talks I couldn't attend because I was engaged elsewhere during the conference, so I can only imagine what other cool information I missed out on. I also met younger audiologists and other professionals in the field who seem to be keen on addressing tinnitus. At the end of the day, I found it quite inspiring!

Attending the conference from the patient's perspective, I was glad to have the opportunity to speak one-on-one with many of the researchers and clinicians during embedded social events. I learned a lot from these conversations and was definitely able to pick up on the passion of these professionals, many of whom came from much further away from Vancouver than I did. Just grappling with the jet lag was serious business! I admire the commitment of the attendees, as well as the researchers, in putting their heads together to talk about tinnitus.

I might have hoped for more collaborative or "round table"-type discussions. There apparently was one on hyperacusis, but I was mostly in another room watching talks on biomarkers of tinnitus. The few times when schedules allowed for an engaged group discussion with a majority of attendees present (as was the case during @Hazel's Outcome Measures symposium) resulted in some collective "a-ha" moments. I am inclined to think that future TRI conferences could benefit from facilitating this type of discussion.

I was wary of what seemed like some suspiciously positive (with virtually no mention of negative) results from using the Lenire device. While I do think there are potentially some very important insights to come from bimodal stimulation, most talks on this subject seemed to sugar-coat the device, and at least from some of the conversations I had with other attendees, it seemed I was not the only one who wondered if we were getting the whole story from those presenters.

From what I could tell, @Hazel seems to be a powerful presence at TRI (I could have been biased - I'll admit I was starstruck half my time at the conference) and a worthy patient representative. Many of the attendees knew or at least recognized her. I saw her ask pointed questions of presenters and fellow attendees. One or both of us were present every day from the earliest to the latest hours of the conference. I admire her dedication to driving the conversation surrounding tinnitus to points relevant to so many of us, the patients. I think there is generally a fear that conferences like these serve as show-boating or at least self-congratulatory behavior (and indeed, there may have been a little bit of that present), but having driven patient representatives like @Hazel present at these conferences pushes the discussion to something more meaningful to us. I would hope that this type of representation can only increase its presence as well as engagement in the future.

At the end of the conference, @Hazel and I sat down to record a 90-minute recap of our experience at TRI. I am excited to listen to it myself, as I greatly enjoyed our discussion - even when we found ourselves in mild disagreement! Overall, I am grateful for the opportunity to have attended the conference and, most especially, to have had the pleasure of being in @Hazel's company for so much of it. She very kindly introduced me to so many "big names" in the realm of tinnitus research. Thank you to @Hazel and Tinnitus Hub for making this fledgling tinnitus researcher's dream come true!

 

[Utdmad89]

Was there anything about loudness and pain hyperacusis at the TRI 2024 conference?

 

[Nick47]

Thanks @JD. It would be interesting to get hold of some of the papers and presentations to get an informed position on who has done/found what.

Thanks for the summary and to @Hazel for not only attending but also holding the researchers' feet to the fire a little bit.

 

[JD]

Was there anything about loudness and pain hyperacusis at the TRI 2024 conference?

There were several presentations on hyperacusis, and I certainly heard mention of pain hyperacusis within them. Looking at the agenda, it seems I was often in another room when hyperacusis talks were going on. I will look more in-depth at the program and try to follow up.

Funny thing (or not so funny, depending on your thoughts): I had always assumed a tinnitus conference would be an almost absurdly hushed, quiet affair. This one wasn't necessarily a Mötorhead concert, but I was struck by the clapping that would follow presentations on hyperacusis and noise sensitivity???

Thanks @JD. It would be interesting to get hold of some of the papers and presentations to get an informed position on who has done/found what.

Thanks for the summary and to @Hazel for not only attending but also holding the researchers' feet to the fire a little bit.

As a research nerd myself, I, too, would like to see the papers (or at least the authors, the titles, and possibly their abstracts) made public. I will see what I can do to facilitate this for this community. I appreciate your wanting to know!

 

[Utdmad89]

There were several presentations on hyperacusis, and I certainly heard mention of pain hyperacusis within them. Looking at the agenda, it seems I was often in another room when hyperacusis talks were going on. I will look more in-depth at the program and try to follow up.

Funny thing (or not so funny, depending on your thoughts): I had always assumed a tinnitus conference would be an almost absurdly hushed, quiet affair. This one wasn't necessarily a Mötorhead concert, but I was struck by the clapping that would follow presentations on hyperacusis and noise sensitivity???

As a research nerd myself, I, too, would like to see the papers (or at least the authors, the titles, and possibly their abstracts) made public. I will see what I can do to facilitate this for this community. I appreciate your wanting to know!

Yes, if I'm honest, I doubted there would be any hyperacusis sufferers there and obviously those kind of places can be uncomfortable sound wise.

 

[Joeseph Stope]

There were several presentations on hyperacusis, and I certainly heard mention of pain hyperacusis within them. Looking at the agenda, it seems I was often in another room when hyperacusis talks were going on. I will look more in-depth at the program and try to follow up.

Funny thing (or not so funny, depending on your thoughts): I had always assumed a tinnitus conference would be an almost absurdly hushed, quiet affair. This one wasn't necessarily a Mötorhead concert, but I was struck by the clapping that would follow presentations on hyperacusis and noise sensitivity???

As a research nerd myself, I, too, would like to see the papers (or at least the authors, the titles, and possibly their abstracts) made public. I will see what I can do to facilitate this for this community. I appreciate your wanting to know!

Clapping after a speech/presentation. You should have all booed. No, I'm only kidding; my strategy is to cover my ears somewhat gently -- or sometimes put on hearing protectors. That strategy is not universally accepted advice. The conventional advice is to try to get used to the loud noise -- unless it's harmfully loud. What's harmfully loud? Some say above 80 dB. Was it above 110 dB? For how long at that dB level?

My trouble at the last TRI conference I attended (in a big modern university auditorium) was catching what was said during the discussions and following the arguments.

 

[Nick47]

I saw a discussion on Twitter about TMS combined with auditory stimulation.



From my understanding of the study, it was ineffective.

After decades of research into TMS and tDCS, clinical practice still has nothing concrete. If some patients benefit as part of a treatment plan, then these methods should be available in tinnitus clinics. If not, are we simply allowing researchers to continue their work with minor adjustments, leading to more trials with mixed results to maintain their funding?

Researchers must be challenged, and the patient group plays a crucial role.

Did Hamid Djalilian discuss his middle ear implants?

Was there any discussion on Neurosoft's approach? Without a comprehensive roundtable discussion, it's just a 10-minute poster presentation followed by applause, rinse and repeat. The process is fragmented and protects individual pieces of funding and research. Are you improving our lives? Absolutely not!

 

[Hazel]

Just a quick note to promise that I will get back in this thread soon with a lot more detailed updates!

Some quick responses to questions/comments above:

Was there anything about loudness and pain hyperacusis at the TRI 2024 conference?

Yes, there were quite a few presentations, and in general, I have noticed an uptick in research on sound sensitivity topics in the past few years.

I liked Fatima Husein's work most, and interestingly, she suffers from hyperacusis herself, which she states has worsened over the years. She talked about visiting busy/crowded cities and struggling to cope, and also deliberately spoke quietly into the microphone so as to avoid causing anyone else discomfort. Some of her work focussed on auditory brainstem responses to sound, comparing tinnitus versus hyperacusis versus misophonia. I'll look at my notes in a bit more detail and report back when I can. I've also asked her if she can share her presentation with us.

There was also a roundtable discussion moderated by Philippe Fournier, which I liked because it was more accessible to a lay audience and asked questions like "is hyperacusis a normal response to an increasingly loud world?", "is it ethical to subject hyperacusis patients to a Loudness Discomfort Level test?" and more such thought-provoking questions, and it was just an open debate on bigger picture questions rather than discussing specific study results (which is what you normally get at a research conference, and can be quite boring, haha).

Hyperacusis Research presented on their work. I greatly admire what they do and encourage anyone who wants to directly sponsor hyperacusis research to look at their website.

David Eddins presented on his hyperacusis treatment. I had already seen a similar presentation from him at ARO 2023, and from what I understand, it's mainly just about exposure to 'stretch' your sound tolerance limits. It might have its use, but I think this is limited to a specific patient group and not for everyone.

Julia Campbell talked about the categorization of sound tolerance disorders, and seemed to follow Rich Tyler's framework of:

• Pain hyperacusis
• Loudness hyperacusis
• Fear hyperacusis
• Annoyance hyperacusis

She posited the theory that misophonia is really just a subset of hyperacusis (I guess annoyance hyperacusis?), which was interesting to me because I've suffered from misophonia since early childhood and have never considered this a sound tolerance disorder, but I guess it could be.

Thanks @JD. It would be interesting to get hold of some of the papers and presentations to get an informed position on who has done/found what.

Thanks for the summary and to @Hazel for not only attending but also holding the researchers' feet to the fire a little bit.

I'm doing this now, and will post at least a few presentations here soon!

Yes, if I'm honest, I doubted there would be any hyperacusis sufferers there and obviously those kind of places can be uncomfortable sound wise.

Fatima Husein talked about her own hyperacusis struggles (see above), and Patrick Neff was hesitant to attend the networking dinner because it was 150 people in quite an echoey room. But yeah, I would not recommend a severe hyperacusis patient attend a research conference.

Clapping after a speech/presentation. You should have all booed. No, I'm only kidding; my strategy is to cover my ears somewhat gently -- or sometimes put on hearing protectors. That strategy is not universally accepted advice. The conventional advice is to try to get used to the loud noise -- unless it's harmfully loud. What's harmfully loud? Some say above 80 dB. Was it above 110 dB? For how long at that dB level?

My trouble at the last TRI conference I attended (in a big modern university auditorium) was catching what was said during the discussions and following the arguments.

I personally feel like clapping is exceptionally loud, but I have never measured it. When I go to concerts -- which I still do occasionally -- the clapping often seems louder than the music itself! By the way, I still have fond memories of meeting you last year in Dublin

I saw a discussion on Twitter about TMS combined with auditory stimulation.

View attachment 56961

From my understanding of the study, it was ineffective.

After decades of research into TMS and tDCS, clinical practice still has nothing concrete. If some patients benefit as part of a treatment plan, then these methods should be available in tinnitus clinics. If not, are we simply allowing researchers to continue their work with minor adjustments, leading to more trials with mixed results to maintain their funding?

Researchers must be challenged, and the patient group plays a crucial role.

Did Hamid Djalilian discuss his middle ear implants?

Was there any discussion on Neurosoft's approach? Without a comprehensive roundtable discussion, it's just a 10-minute poster presentation followed by applause, rinse and repeat. The process is fragmented and protects individual pieces of funding and research. Are you improving our lives? Absolutely not!

So here's my take on the transcranial magnetic and/or electrical stimulation approaches. I feel like I keep seeing the same study results over and over, which are all less than promising. One might wonder why they keep bothering at all. The point here (which has only been pointed out to me in side conversations at conferences and somehow is often not made explicit in the public talks) is that there are literally thousands of possible protocols for applying the stimuli in terms of timing, frequency, locations, etc. It's literally like trying to kill a mosquito with a cannon and not knowing where to aim. Maybe they'll get it right one day; but from my point of view, you'd need to do much quicker, iterative, trial-and-error studies to find the magic approach -- if it exists at all.

Hamid Djalilian talked about migraine and tinnitus. It was interesting, and not uncontroversial. I will report in more detail later . He did mention they've already been testing the electrical implant on humans, which is quicker than I thought, so that's promising.

Neurosoft was not there. I did have a call with some company reps recently, and my impression was this is very interesting but also sounds very much 'out there' -- I don't have enough technical knowledge to assess whether they really know what part of the brain to stimulate and how. It's a bit like the TMS stuff. It could be more effective, but it is definitely also more invasive. There are no real results yet to present either way.

 

[Utdmad89]

Thank you @Hazel. I also suffered from misophonia way before I developed tinnitus/hyperacusis/noxacusis. I also don't quite see how it's the same as sensitivity.

 

[UKBloke]

Just a quick note to promise that I will get back in this thread soon with a lot more detailed updates!

Hi @Hazel, thanks again for being out there and representing us.

If I remember correctly, one of the main points discussed at the conference was the question, "How should we measure the success of tinnitus trials and interventions?" Did anyone in attendance discuss the lack of objective tinnitus measurement?

there are literally thousands of possible protocols for applying the stimuli in terms of timing, frequency, locations, etc. It's literally like trying to kill a mosquito with a cannon and not knowing where to aim.

This is the exact point I've been raising here for the last few years. It's also the fundamental reason I started researching broad-band treatments. There's a lot of science and common sense about why such treatments could be effective, but unfortunately, much of it is buried in the last century. This frequency-specific stuff makes no sense at all and is a step in the wrong direction, in my view.

 

[Nick47]

This frequency-specific stuff makes no sense at all and is a step in the wrong direction, in my view.

I think in terms of frequency, for noninvasive stimulation, they are referring to how often they stimulate. Is it daily, three times a week, over a period of a month, three months, etc.?

In terms of bimodal, I agree that the sound frequency may not be that important, and simply using a broadband-type approach may be sufficient.

 

[Hazel]

If I remember correctly, one of the main points discussed at the conference was the question, "How should we measure the success of tinnitus trials and interventions?" Did anyone in attendance discuss the lack of objective tinnitus measurement?

Indeed! This was in fact the symposium that I organized. We recorded the whole thing, but I'll post some notes here soon. And yes, objective measures were part of the discussion, mainly covered by Joel Berger from University of Iowa.

 

[UKBloke]

I think in terms of frequency, for noninvasive stimulation, they are referring to how often they stimulate.

"Classic" TMS is delivered in pulses from 1-10 Hz. This opens up the question of researchers wondering, "Could 5.375 Hz be the magic frequency?" And on, and on, and on...

I think Lakhovsky was on the right track.

 

[Hazel]

OK, I'm back as promised with a longer report on the conference.

My Key Takeaways

In no particular order, here are some interesting new things I learned during the conference. Keep in mind that there were many parallel sessions, so one had to pick and choose what to attend; hence, this does not represent the whole program per se.

Research Presentations:

Arnaud Norena's work on KCC2 – I like him generally as a researcher because he approaches the problem of tinnitus from many different angles. KCC2 is a potassium chloride transporter that influences GABA, a neurotransmitter that inhibits nerve signals, i.e., calms down brain activity. GABA inhibition has long been hypothesized to be associated with tinnitus. He did some work on animals indicating a chain reaction from noise-induced hearing loss through this KCC2 chemical, leading to less GABA and thus overexciting the auditory nerves, creating a tinnitus signal. One must always be careful to realize that this is just an animal study so far, and the theory has yet to be validated in humans. Still, it's a potential new avenue for cure-focused research.

Dirk de Ridder's "War on Tinnitus" talk – The title of his talk raised some concerns from the audience over its perceived controversial nature. But I liked it because some controversy might be precisely what these kinds of conferences need to create a sense of purpose and urgency. We recorded his talk in full, to be published later, but summarizing briefly: He talked about how tinnitus should be approached at the overall system level, using a combination of different treatments that target different brain areas to break up the 'network of tinnitus.'



Hyperacusis & misophonia – It's really good to see the increased attention on these topics. I already wrote up a summary in my previous post. See above.

Emilie Cardon – I think she is a very promising young neuroscientist. She delivered two presentations: One on a potential tinnitus biomarker and one on tinnitus's effects on cognition in cochlear implant users. I've attached both presentations here; she was kind enough to share them.

Hamid Djalilian's work on migraine and tinnitus – I only knew Dr. Djalilian from his work on electrical stimulation of the inner ear to resolve tinnitus, which I interviewed him about for the Tinnitus Talk Podcast. While that work has apparently moved into human trials, which is promising, he has also been working on the link between tinnitus and migraine. His theory is that tinnitus worsening could be caused by migraine. He stressed that migraine does not always come with a headache, but rather it's a 'central hypersensitivity disorder' that can make the ringing louder. He's had some success lowering tinnitus in his clinic through migraine treatments and reducing lifestyle triggers.

Robin Guillard's work on tinnitus and dreams – We co-authored a paper with Robin that was based on data we gathered (publication pending) that looked into the relationship between tinnitus and naps. Here, he presented on tinnitus and dreams. See the attached presentation. This might seem like a somewhat 'fluffy' topic, but as you can see in his presentation, there is a hypothesized link between lucid dreaming and a tinnitus on/off switch.

Tinnitus Hub Milestone: Organizing Our Own Symposium!

I co-organized an entire symposium, a huge landmark for Tinnitus Hub. At the last TRI in Dublin, we were on stage for the first time, and now we are organizing a symposium. We recorded the whole thing, which will soon be published, and I will also share all the slides in the next post. But I can already say that it was very well received. It really made some researchers stop and think about the patient experience when it comes to measuring treatment success.

A personal highlight for me was that at the final conference session, where Berthold Langguth summarized key learnings from the conference, he showed not just one but three of my slides – and he did not do this for any other presenter! So, here's a big thank you to Berthold for taking patient participation seriously.

Organizational/Corporate Presentations:

ATA expanding its grants program – The American Tinnitus Association had a lot more news to share than ever seen before. There's definitely a renewed sense of purpose under their fresh new CEO Patrick Lynch. Of particular interest is the fact that they're planning to expand their grants program. See picture below. However, when I asked what the research focus of their grants program would be, they didn't really have an answer.

Revitalization of the TRI? – The Tinnitus Research Initiative (TRI) used to provide funding that led to many of the earliest insights on tinnitus. These days, it's more of a network organization that, in my view, has been quite dormant. But a presentation by two TRI board members – Sven Vanneste and Berthold Langguth – announced some potentially exciting new plans, including relaunching their working groups and newsletter, and the upcoming launch of a central tinnitus database.

Neuromod/Lenire was VERY present at the conference. They had a booth, and several sessions were dedicated to clinicians/audiologists speaking about 'real world' evidence from their clinics. This evidence was all so positive that I could barely believe it. I suspect there's some self-selection mechanism going on whereby only the most motivated/receptive patients end up starting AND finishing the treatment, and those results get reported. Neuromod also organized a small pre-conference dinner to which I was invited for some unfathomable reason.

Two interesting takeaways from Hubert Lim's presentation at this dinner:

• He spoke of Lenire 2.0, which will be much more personalized. Specifically, it will include 'notched' sound therapy—hardly a novel idea, but it's good that they're looking at personalization. I was a bit confused, though, because they've spoken in the past about the treatment being customized, but I suppose that was only customization to one's hearing threshold, not to one's tinnitus.
• In response to a question about why they did not report on minimum masking levels to prove whether loudness reduction was occurring, apart from the answer that we've heard before about how difficult this is to measure, I heard a new answer this time, namely: "Lenire is just distraction for the brain." I hope I'm not misquoting here, but I recall Hubert Lim saying this.

Areas for Improvement

Academic conferences can be tedious, longwinded, overly technical, and navel-gazing affairs. The TRI conference is no different, especially when you're attending as a layperson. The relevance of certain findings for us tinnitus sufferers often remains unclear or has not been sufficiently considered. Some specific areas for improvement I would highlight are:

• There is a lack of central coordination from the TRI board. I have spoken to them about this in the past. Each conference tends to be quite different depending on the local organizing committee. I have yet to see a strong centralized research agenda. But maybe their new direction (see above) will bring this.
• Having Pawel Jastreboff opening the conference hardly speaks to a spirit of innovation and fresh energy. His presentation was nearly 60 slides long, and while I think he ended with some genuinely good recommendations (e.g., about publishing negative results and sharing data), my view remains – also from talking to many neuroscientists about this – that his neurophysiological model of tinnitus has not been validated, and TRT has rather underwhelming outcomes and can at best be considered just one of many similarly underwhelming tools in a clinician's toolbox.
• There were a lot of topics that I recall from previous conferences (TRI but particularly also ARO) that were missing here, where it would have been interesting to hear about updates or progress. For instance, regarding tinnitus potentially being caused by an inflammatory response and the role of metabolomics and genetics in causing tinnitus.
• There were many 'same old' presentations that gave me a sense of déjà vu. For instance, two sessions on the heterogeneity of tinnitus, a few sessions on sound therapy and counseling, and 'new' trial results from neuromodulation approaches like rTMS and tDCS, where it seems they still haven't found the magic bullet.
• There was also some potentially interesting stuff but with a "so what?" aspect, e.g., categorizations of hyperacusis that seem more like a semantic discussion than anything else or studies linking tinnitus to cognitive impairments or stress without any sense of the mechanism behind it, or the finding that there is a 'spatial perception' to. The added value or benefit to patients is either unclear or limited.
• As in previous years, there was very little representation from the industry, apart from the usual suspects like Neuromod and Neosensory. Of course, it's not entirely the organizers' fault, considering how little interest the industry has in tinnitus. However, it would be good to see some efforts made, even by inviting speakers from other fields, to translate academia into commercial investment.

Networking

Above all, I fear that my critique sounds very doom and gloom, as if it were all a giant waste of time. I will tell you that nothing is further from the truth, though. Inspiration is always found in new research insights, clinicians' persistence in doing their best for their patients, hearing about new research ideas, and simply connecting on a human level. I can definitely corroborate what @JD mentioned above about dedicated and hard-working individuals from all around the globe.

You will usually learn the most interesting things during the informal networking around the conference. This includes:

• Hearing an ENT doctor say that the Lenire 'real world' results were not legit because both the company and the audiologists have a vested interest in selling the device to as many people as possible, whereas it's probably only helpful for a subset of patients.
• Hearing people critique each other's work. For instance, I spoke to Will Sedley, a neuroscientist whom I greatly respect, who was somewhat skeptical Dr. Djalilian's migraine theory, and indeed, it seems much of it is (as of yet) unsubstantiated but still an interesting avenue of investigation for a specific subgroup of patients. I also discussed with Hamid the possibility of doing a large-scale survey through Tinnitus Talk to substantiate (or disprove) the association between migraine and tinnitus.
• Similarly, I discussed with Robin Guillard the idea of significantly expanding the sample size of his dreams study, as this kind of data (i.e., "do you hear tinnitus in your dreams?" and related questions) is easy to collect online. So, it might be interesting to help him collect larger survey data. What do you guys think?
• Hearing of new research ideas. Emilie Cardon, for instance, shared a new research idea with me that sounded interesting: To look at cochlear implant users whose tinnitus disappears when they turn the device on, and try to measure the difference between the 'tinnitus on' versus 'tinnitus off' state – I didn't have the chance to ask what she wanted to measure, but it seems to me such a study could yield important clues about where we should intervene to silence tinnitus.

But there's one experience in particular that I would like to highlight. They did not formally present anything at the conference, but the Rainwater Foundation was present with several people. Why is this interesting? They have been funding brain degradation conditions like Alzheimer's for years. However, since Todd Rainwater developed tinnitus himself, they are now funding a large consortium study to find a tinnitus biomarker. A fresh new player in the field; that's always good to see!

Finally, Vancouver is a gorgeous city, and I felt blessed to spend a week there representing all of you guys. Thank you to everyone who donated to make this happen! Here's a picture of the conference venue:

 

[MiaVIL]

I'm sorry, but can someone explain why Dr. Susan Shore and Auricle weren't at the conference and why Dr. Pawel Jastreboff was still headlining?

 

[Nick47]

shared a new research idea with me that sounded interesting: To look at cochlear implant users whose tinnitus disappears when they turn the device on and try to measure the difference between the 'tinnitus on' versus 'tinnitus off' state – I didn't have the chance to ask what she wanted to measure, but it seems to me such a study could yield important clues about where we should intervene to silence tinnitus.

It's possibly the biggest and most obvious open goal there is.

Recruit cochlear implant patients whose tinnitus is greatly suppressed or eliminated while the cochlear implant is switched ON. This is ideal as the patient serves as their own control.

I'm sorry, but can someone explain why Dr. Susan Shore and Auricle weren't at the conference and why Dr. Pawel Jastreboff was still headlining?

Dr. Shore is not going to attend every conference. Would you?

 

[Alberte]

Thank you @Hazel for your hard work! A lot of research and researchers, but not enough concrete results for us.

 

[MiaVIL]

Dr. Shore is not going to attend every conference. Would you?

Yes, I would.

 

[marqualler]

Yes, I would.

I believe @Hazel mentioned in another thread that Dr. Shore is on radio silence publicly out of respect for the FDA process.

 

[UKBloke]

Hearing of new research ideas. Emilie Cardon, for instance, shared a new research idea with me that sounded interesting: To look at cochlear implant users whose tinnitus disappears when they turn the device on and try to measure the difference between the 'tinnitus on' versus 'tinnitus off' state – I didn't have the chance to ask what she wanted to measure, but it seems to me such a study could yield important clues about where we should intervene to silence tinnitus.

Thanks for the report! That's a very welcome and interesting development. If Emilie Cardon can push for some collaboration with Hamid Djalilian and Heidi Olze, we'd have the dream-team for that particular area of research.

 

[Hazel]

Here is also Dr. Fatima Husein's presentation on "Electrophysiological measures of hyperacusis, misophonia and tinnitus."

And the conference group picture, if you're interested

 

[dan26]

Pawel Jastreboff should be a pariah, not a keynote speaker.

But when you think about all the useless (at best) therapies his disciples sold and keep selling, no wonder he is their hero.

Somebody there should stand up for why he is a keynote speaker when his "therapy" has been debunked.

How in the world can you train your brain not to hear crazy loud sounds? TRT? A bunch of BS!

 

[Stanley Pickle]

I could never actually go to anything like this as my tinnitus has gotten to such a debilitating level that even leaving the house is getting hard, but I made a donation and I hope it helps.

I haven't done anything with family or friends in years. It's hard to be happy and have conversations with people when all I can think about is the loud, blaring ringing in my ears. My life has been miserable, and all I do is lie in bed, trying to sleep my life away. Endless tears!