Tinnitus Research Initiative (TRI) 2023 Conference

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

 

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.

 

@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.

 

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.

 

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

 

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.

 

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.

 

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.

 

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?

 

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.