Tinnitus Research Initiative (TRI) 2024 Conference

I really love the topic you’ll be discussing in your seminar. It's such a pivotal question that needs to be addressed.

 

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.

 

It looks like there is an earlier topic at 0800 that ties into Tinnitus Hub's. I wonder if you could get advance information on what will be presented.

 

Kind of depressing. I expect these conferences to get more exciting and not regress back into the 1980s.

What is Pawel Jastreboff doing in attendance?

 

How is Susan Shore not the keynote speaker this year?

I am losing what little hope I have left that her device will actually be approved and, even if it is, will not be as successful as we have been led to believe.

 

Good luck with the conference this year, @Hazel! Thanks for working so hard on our behalf.

It is slightly odd. Even if there wasn't anything new to announce or discuss as such, she could still go over the latest trial results, recap the science, and create more awareness around the device.

 

We appreciate everything you guys do. Thanks for continuing to work so hard.

 

Yep! It will be nice to know what they're doing to help tailor Tinnitus Hub's presentation; hopefully, there will be room for some synergy or at least something to build on to make Tinnitus Hub's follow-up presentation stand out, and who knows, it could be a good contact to have if they're thinking the same way!

Cheers and good luck. Vancouver is a beautiful place.

 

@Hazel, congratulations on your commitment and presence at the Tinnitus Research Initiative conference in Canada.

Time passes, and for years now, it has often been said that the genesis of tinnitus lies in the brain stem and the cochlear nuclei. Is this really the case?

If so, at what point will a pharmaceutical company commit in this direction? Or is it still difficult for researchers to find a solution to reduce this hyperactivity?

Are we to believe that, in 2024, discussions between health professionals at tinnitus conferences will still focus on psychology and CBT?

 

I feel like we've reached the limit with sound therapy and counseling at this point. What more is there to discuss?

I would rather see fresh new approaches, ones that can hopefully advance or innovate tinnitus research further.

Jastreboff giving a keynote lecture this year:

 

I would like to see Jastreboff put in a care home and tagged.

 

I'm hoping 2025 will be the year of bimodal stimulation. If Dr. Shore's device succeeds, then I expect to see a lot more research centered around it. I don't think her device will be a silver bullet, but it may start a fire.

 

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.

 

I couldn’t agree more it’s time to look beyond that paradigm now, and rightly so; Pawel Jastreboff had had his day. I lost complete respect for the guy when he referred to severe sufferers as ‘flag wavers’ and ‘claim makers.’ His whole house of cards was proved as BS by a study anyway; he has no place on that stage.

I hope Dr. Shore’s device and pipeline drugs, like Prof. McNaughton’s and potassium channel blockers, start moving into the realms of tangible treatment that gets better over the decades and put Pawel Jastreboff, along with CBT practitioners, into the history books forever.

 

I´ve made a small donation since I don´t know how much longer I will be able to keep working

By the way, it´s a shame that Pawel Jastreboff is going to be there.

 

First Sounds of the Cavalry Coming?

Well, curb your enthusiasm. We've all had our hopes raised and dashed oh so often in the past.

Nevertheless, something caught my eye today in the town library. On the cover of the glossy mag "Science Today" -- or was it "Science Direct"? Sorry. It's my Alzheimer's or my poor vision. It was on the cover of New Scientist on 20th April 2024. The article is by Clare Wilson. She reports that there is an aura of optimism among the researchers because they are now looking at tinnitus in a different way than before. In the case of those who have tinnitus but no hearing loss, they have tended towards the assumption that it's more likely to be damage to the nerve and/or synapses rather than damage to the inner hair cells. Using neurotrophins (what's that? ) they can repair the broken nerve fibers even decades after the damage. Hey! Mice don't live decades long! Mention is made of Dr. Charles Liberman, who wrote the trailblazer on hidden hearing loss, and she also mentions Dr. Susan Shore, who is tackling things from the brain side of things (Dorsal Cochlear Nucleus).

In short, it's an interesting summary of what the scientific front runners here on Tinnitus Talk have been discussing, but all in one article. At the very least, it will set your ears ringing again for a few days as it puts tinnitus at the center of your psyche and maybe cheer you up for a few days, too.

I hope this helps.

 

I love reading some of your posts. One you made about tinnitus disappearing to the background when other issues arise. How true! My mental health has plunged since my condition worsened, and the thoughts it has caused have, at times, indeed, pushed it out of "focus." However, this is not the way I, or others, would wish to live.

What's disappointing about the Tinnitus Research Initiative conference is it does not seem to be preparing any advancement in our knowledge. What are we to expect from this? More psychological findings and pupil size correlations, mixed with the usual "tinnitus is only partially understood" claptrap.

What we all want is for researchers to present preprints of studies their teams have carried out, findings, and how these can be used to develop treatments. Following this, a general discussion on the next steps and some delegation would be good.

There is a danger that some of these groups are far too comfortable. The UNITI project is a combination of shambles and tired old methods. What the hell is that?

 

Welcome, dear cellmate. I can see that you come from the land of Shakespeare, and you expressed it so aptly.

But to the nuts and bolts of this article I alluded to, I think there is much more to be gleaned from it than my rusty non-medical experience can bring. In my humble opinion, it's likely that we all may be able to profit in some way from this new angle:

They say the synapses go first in any loud noise damage, then the nerve, and maybe the hair cells.

Well, mending the synapses—I'm sure we are all a mix of broken hair cells, broken synapses, and frayed nerves.

So, mending the synapses might bring the tinnitus down a decibel or two to a more comfortable, less intrusive level.

 

There is a symposium on 12 June, "Tinnitus and Physical Links."

Of particular interest would be Robin Guillard's discussion of his study regarding REM sleep impairment and tinnitus modulation. It's widely reported that sleep seems to play a profound role in tinnitus in a lot of people (e.g., the 'always louder after a nap' phenomenon). I hope more research is on the horizon in this space; at the moment, there only seem to be two papers that have investigated the connection, and their conclusions seem to be the opposite of one another. Guillard's study seems to imply more REM sleep might be needed, but the 2022 Brain Communications study suggests sleep restriction might be a viable therapy.

(Also, how much would need to be donated to stage a mass protest of Jastreboff's keynote address? How about just for some loud "boos"? )

 

Yes. Anyone working on anything to fix the synapses? Is the answer a "no"?

 

I'm not for booing, jeering, or animosity of that kind.

I am for people from the community expressing their disapproval of Pawel Jastreboff's attendance directly to the TRI. This can be done through Facebook, Twitter, or any other means of contact. Simply saying you disapprove, are disappointed, or whatnot should send the message to the organization that it cannot operate as a closed bubble.

 

@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.

 

Obviously, I was kidding, but I entirely agree. The community should let the TRI know that we (or at least a sizeable portion of tinnitus sufferers) very much disapprove of Jastreboff's involvement. I don't know if some kind of petition would be appropriate, but anything to ram home the point. I'm not sure many people in the tinnitus research community are aware of just how odious many of us find Jastreboff to be.

 

@Hazel, the above is a good point. The lead researcher of the Bionics Institute has said they now want to test this with treatments. They are currently working with an audiologist. I guess the response will be it's not sensitive enough; however, as @UKBloke has said, it could be a tertiary outcome measure, so not derailing the trial.

And what about the objective measure used at the University of Michigan or even MML (Minimum Masking Level)? The subjective measure of TFI -13 points is dead. It is useless beyond belief and, in some cases, allows a placebo effect to push a scam to market.

 

I’d second this message from the tinnitus community. Obviously, any method of measurement has shortcomings, but it would seem like a good best practice to at least attempt an objective measurement in addition to THI/TFI in all tinnitus studies.

It might even lead to a change in researchers’ perspectives and priorities if they have to publish time and time again that there is no change in tinnitus volume.

 

I’ve been saying this too. If we want to see rapid and meaningful progress, it starts with every tinnitus researcher recognizing the major limitations of relying on subjective self-reports.

At some point, THI/TFI should eventually become a supplementary tool for objective measurements once they’re available. Measurements that can quantify the severity and loudness of tinnitus would be perfect. The other pieces will fall into place from there.

 

Just saw this:

Tinnitus classification based on resting-state functional connectivity using a convolutional neural network architecture

 

Great.

Visual Snow Syndrome is also a functional connectivity issue. fMRI imaging suggested it was due to dysfunctional serotonin and glutamate networks.

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