Tinnitus Research Initiative (TRI) 2019 Conference

[Markku]

Last year's conference took place in Regensburg, Germany.
Read the TRI 2018 conference report by @Steve.

Now it's time for the TRI 2019 conference in Taipei, Taiwan.

This year some notable keynote speakers include Dr. Susan Shore.

• Tentative Program
• Invited Speakers

We (Tinnitus Hub) will have representation at the conference, and are planning to report as much as possible.

Time:
17-19 May 2019

Location:
Taipei, Taiwan

Website:
http://2019.tri-conf.org/

Update May 2020:

You can find the complete overview of all our TRI 2019 reporting under the tab "Updates & Videos" at the top of this thread. You can also watch all 17 of the videos here.

Unfortunately, the May 2020 TRI conference in Vancouver was cancelled, but we'll keep gathering the newest research insights for you!

 

[Hazel]

Yes, I will be going to Taipei for the TRI conference soon!

Very excited, but also slightly nervous about the responsibility to adequately represent you guys there. In fact, it seems we might be the ONLY patient organisation present, which makes it all the more important to get the most out of it.

Our plan is threefold:

1. Attend as many interesting talks as possible, take notes, and report back to you guys;
2. Network, network, network - Are there researchers looking for patient input or involvement? Other collaboration opportunities? I'll be on the look-out;
3. We are arranging a professional cameraman to follow me around while I conduct interviews with as many interesting researchers as I can. This could result in a great video series, if all goes well (but if there's one thing I've learned about video projects by now is how many things can go wrong!).

Of course, I'm trying to do the job of three people by myself. Quite stressful, and inevitable that I'll not be able to cover all three aspects in the depth I would like. But I promise to do my best!

Read more about the conference here, and the tentative programme here.

Any input is much appreciated, but must be in by 13th of April, or I won't have time to prepare.

 

[Clint Azzopardi]

Looking forward to what you have to report

 

[Autumnly]

Any input is much appreciated, but must be in by 13th of April, or I won't have time to prepare.

Would be awesome if you were able to see these presentations:

• Pathophysiology - Josef Rauschecker (Reg. S054), USA
• Prof. Susan E. Shore: Brainstem mechanisms in tinnitus
• Specific Forms of Tinnitus - Sarah Michiels (Reg. S004), Belgium

And I'd be interested in these presentations but, to be completely honest, only to find out whether it's just another "it's all just a matter of perception" talk:

• Psychological View of Tinnitus - Nicolas Dauman (Reg. S014), France
• Behavioral therapy - Rilana Cima

Thank you so much for all the hard work and effort you're putting into helping us all!

 

[Hazel]

• Pathophysiology - Josef Rauschecker (Reg. S054), USA

• Prof. Susan E. Shore: Brainstem mechanisms in tinnitus

• Specific Forms of Tinnitus - Sarah Michiels (Reg. S004), Belgium

Yep, I had those on my list as most interesting as well! Might not be able to attend all three though, since I'll be conducting interviews at the same time ... Which is probably why I'll skip the other two you mentioned, unless I can find a way to clone myself

Thank you so much for all the hard work and effort you're putting into helping us all!

THANKS!!!

 

[Hayls32]

Thank you so much for your incredible efforts!

 

[Starthrower]

@Hazel one of my best friends will be a speaker there! He is the head of the University of Singapore. Please try to speak to him and let him know that Bob and Jen in California requested he speak with you personally.

I am trying hard to get him to take part in Tinnitus Hub. Once he realizes exactly what you do for the organization and for us he will give you time and you will LOVE him. He is so down to earth and has been to our home on several occasions before he and his wife moved from OHSU (when the university closed the tinnitus clinic). We worked with him on several fund raisers for the clinic.

He did ask us to go. But we cannot make that trip. I am so excited Hazel. This is a great opportunity!!!
Thank you so much for spending the time and money (do we need a little fund raiser for this) to help your costs?

Keynote Speakers
Ana Belén Elgoyhen (Argentina)

Antonio Lopez-Escamez (Spain)

Willian Martin (Singapore)

Susan E. Shore (USA)

Nathan Weisz (Austria)

 

[Contrast]

I can't find Pawel Jastreboff's name on the list, but you guys could do the right thing and address concerns about the CBT/TRT monopoly going on in the field.

It's exciting Dr. Susan Shore will be attending.

 

[Frédéric]

In my humble opinion: the most important is to attend to the talks*, you will have the time to feature interviews with the interesting researchers later via webcam (you at home, the researcher in his/her lab), with a Q&A list from the members of Tinnitus Talk. I said that because researchers will be rushed and perhaps won't have time for you.

* unless all talks are recorded, in that case it would be interesting and possible for Tinnitus Talk (as a strong patient community) to get access to the records. It would be very nice of them.

I am personally interested in:
K02: Tinnitus: Pharmacological Intervention, what should we target?
S18: pharmacotherapy

Thank you so much @Hazel for your work.

 

[Hazel]

Thanks @Frédéric!

you will have the time to feature interviews with the interesting researchers later via webcam (you at home, the researcher in his/her lab), with a Q&A list from the members of Tinnitus Talk. I said that because researchers will be rushed and perhaps won't have time for you.

This wouldn't be the same at all, it would lead to very poor quality and we would miss the personal interaction and sense of location. We're striving to make a high quality video series and the long distance set-up just doesn't work for that; nobody will want to watch that (well, maybe a few hard core folks here on the forum, but definitely a small group).

We've been in touch with the conference organisers and a few others about this, and they assured us it should be possible, and some participants have in fact already agreed; after all, it will only cost them 10 minutes or so (they will be quick interviews). In a way it's easier to grab people on the spot than to get them to set a date and time in their normal daily schedule - we have experience with this when trying to set dates with our podcast guests, it can take months! So we're quite set on this approach

unless all talks are recorded, in that case it would be interesting and possible for Tinnitus Talk (as a strong patient community) to get access to the records. It would be very nice of them.

I don't think this is the case unfortunately, but if it is I will surely ask them to share with us!

We're very much aware that this is not an ideal situation, with me not being able to attend all the talks and having to split my attention so much. In fact, even if I were not doing anything else, I could still only attend 50% of the talks since they are all in parallel!

The ideal situation would be to go there with a delegation of 3 people, then you can really cover all the bases. But we'd have to get funding for that; we were very lucky to even get funding for this though!

 

[Hazel]

@Hazel one of my best friends will be a speaker there! He is the head of the University of Singapore. Please try to speak to him and let him know that Bob and Jen in California requested he speak with you personally.

I am trying hard to get him to take part in Tinnitus Hub. Once he realizes exactly what you do for the organization and for us he will give you time and you will LOVE him. He is so down to earth and has been to our home on several occasions before he and his wife moved from OHSU (when the university closed the tinnitus clinic). We worked with him on several fund raisers for the clinic.

He did ask us to go. But we cannot make that trip. I am so excited Hazel. This is a great opportunity!!!
Thank you so much for spending the time and money (do we need a little fund raiser for this) to help your costs?

Oh, thanks for the tip! I will make sure to get an interview with him. What should I ask him to talk about?

 

[Hazel]

I can't find Pawel Jastreboff's name on the list, but you guys could do the right thing and address concerns about the CBT/TRT monopoly going on in the field.

It's exciting Dr. Susan Shore will be attending.

His name is not on the list, because (as I've learned from my interactions with tinnitus researchers so far), no one in the tinnitus research field takes him seriously anymore. He's simply not considered relevant to modern day tinnitus research.

As far as the CBT monopoly goes, that's debatable. Recent tinnitus research initiatives like TIN-ACT and ESIT (both of which we're a partner of) are heavily focussed on etiology, animal studies, neurology, etc. In ESIT for instance, only one of the 15 PhD students takes a psychological approach, so that's less than 7% of the funding. Their reasoning is that these studies still have value as long as they also tie in with the other approaches, i.e. it should all be interdisciplinary, and the different fields can inform each other.

If you look at the TRI conference programme, I think there's only two talks or so explicitly from a psychological angle, out of dozens of time slots, so I don't see a monopoly there either.

I think the monopoly you speak of is mostly present in the clinical world (for obvious reasons, i.e. it's the only tool they can really offer their patients), but not so much anymore in the research world. I'm happy to be corrected though.

 

[ageoflove]

It would be nice to ask Dr. Rauschecker if there has been noteworthy progress in his work since your podcast interview. Probably not enough time has passed for it to have progressed.

It would also be interesting to find out if ongoing research remains, which tries to locate and/or fix chronic tinnitus in the inner ear, or if nowadays everything turns out to aim and fix the brain.

I have read some literature where the author claims that tinnitus is caused by structural damage/weakness/overbending of the tectorial membrane (maybe also other inner ear membranes). I can't imagine this since I think membrane damages would heal or, if damage is huge, would lead to severe deafness. Guess they would also have seen this in animal experiments.

Good luck to both of you!

 

[Contrast]

His name is not on the list, because (as I've learned from my interactions with tinnitus researchers so far), no one in the tinnitus research field takes him seriously anymore. He's simply not considered relevant to modern day tinnitus research.

As far as the CBT monopoly goes, that's debatable. Recent tinnitus research initiatives like TIN-ACT and ESIT (both of which we're a partner of) are heavily focussed on etiology, animal studies, neurology, etc. In ESIT for instance, only one of the 15 PhD students takes a psychological approach, so that's less than 7% of the funding. Their reasoning is that these studies still have value as long as they also tie in with the other approaches, i.e. it should all be interdisciplinary, and the different fields can inform each other.

If you look at the TRI conference programme, I think there's only two talks or so explicitly from a psychological angle, out of dozens of time slots, so I don't see a monopoly there either.

I think the monopoly you speak of is mostly present in the clinical world (for obvious reasons, i.e. it's the only tool they can really offer their patients), but not so much anymore in the research world. I'm happy to be corrected though.

True, I meant the monopoly in the clinical world, not the research world.

Thank you for pointing that out.

 

[Starthrower]

Oh, thanks for the tip! I will make sure to get an interview with him. What should I ask him to talk about?

Dr. Billy Martin works a lot with brain surgery techniques. He was often asked to be present during surgeries.
He and his wife were going or planning on opening the first tinnitus clinic on that side of the world.

 

[Manny]

His name is not on the list, because (as I've learned from my interactions with tinnitus researchers so far), no one in the tinnitus research field takes him seriously anymore. He's simply not considered relevant to modern day tinnitus research.

As far as the CBT monopoly goes, that's debatable. Recent tinnitus research initiatives like TIN-ACT and ESIT (both of which we're a partner of) are heavily focussed on etiology, animal studies, neurology, etc. In ESIT for instance, only one of the 15 PhD students takes a psychological approach, so that's less than 7% of the funding. Their reasoning is that these studies still have value as long as they also tie in with the other approaches, i.e. it should all be interdisciplinary, and the different fields can inform each other.

If you look at the TRI conference programme, I think there's only two talks or so explicitly from a psychological angle, out of dozens of time slots, so I don't see a monopoly there either.

I think the monopoly you speak of is mostly present in the clinical world (for obvious reasons, i.e. it's the only tool they can really offer their patients), but not so much anymore in the research world. I'm happy to be corrected though.

Wow! That's great!

 

[erik]

2020 Vancouver B.C. is not that far from me.

 

[Hazel]

2020 Vancouver B.C. is not that far from me.

You should represent us there, Erik! Would you be willing to do that?

 

[erik]

You should represent us there, Erik! Would you be willing to do that?

It is hard for me to plan out that far ahead with my current employment situation, but I would be willing to revisit this as we get closer to the 2020 date.

 

[TimmyC]

2020 Vancouver B.C. is not that far from me.

Hey I also live in Washington! I live in Vancouver (SW WA).

 

[Hazel]

Hey I also live in Washington! I live in Vancouver (SW WA).

Yay! We should be able to get an awesome delegation together then. Much easier than Taipei

Can't wait for 2020!!!

 

[TimmyC]

Yay! We should be able to get an awesome delegation together then. Much easier than Taipei

Can't wait for 2020!!!

Yeah! And I actually visit VBC often (it's about a 6 hour drive from me), so I mean in 2020 I would also most likely be interested since I am usually there anyway for vacation. I'll keep in touch about this in the future!

 

[erik]

Hey I also live in Washington! I live in Vancouver (SW WA).

I am in Spokane, yes, keep in touch!

 

[Starthrower]

@Hazel in case people missed this in the Behind the Scenes - Weekly Updates thread have a safe trip tomorrow and thank you for the personal time and money you give to all of us.

@Hazel wrote:

Conferences & Events

Tomorrow, I'll be taking the train to Berlin for the next TIN-ACT meeting. Read more about it here, including the presentation I worked on today and will be delivering there.

We secured a cameraman for the TRI Conference in Taipei! He seems very professional, so fingers crossed. Winny Schlee, the scientific coordinator of the TRI, and a few of his colleagues at Regensburg University, have been extremely supportive in helping us to put together a list of people to interview and reaching out to them. I will also try to record a podcast episode with Winny, and even bought some good sound equipment for that (well, not just for that, we'll definitely be needing it for future podcasts and videos too).

Read more about the TRI conference and give your input in this thread.

 

[Markku]

Tomorrow @Hazel is traveling to Taipei for the Tinnitus Research Initiative conference! She's going in spite of the fact that her mom suffered a stroke and is currently in the hospital. She didn't want to disappoint any of you by cancelling the trip; that is how much our cause means to her - while obviously she also loves her mom dearly and is deeply concerned (evidence: this week she had to cut short the TIN-ACT meeting in Berlin because of her mom's sudden sickness; she immediately flew to Bath, UK to see her in the hospital, and stayed there for a couple of days taking care of her).

The flight is a whopping 13 hours! The plane is a KLM Boeing 777-300ER with a 3-4-3 configuration. We were able to book her an aisle seat, thankfully.

Good thing is that it's a direct flight, unlike on the way back, which has a layover in Paris - overall that one will be 17 hours.

The conference itself starts on Friday, but we have booked some interviews to take place before that.

Hazel will be interviewing, for example, Winfried Schlee, the scientific coordinator of Tinnitus Research Initiative, and many other interesting tinnitus researchers and clinicians!

We'll keep you posted!

Everyone please wish @Hazel good luck! It has been my utmost pleasure to get to know her and have her involved in our work! I greatly respect her and everything she does.

 

[reggie green]

What researchers are leading the search for causes, treatments, and cures? Why can't companies work together on finding solutions?

 

[Rinz]

Dear Hazel,

My name is Rinz (I'm also Dutch) and have had tinnitus for a long time!

Thank you for joining the conference on our behalf! I hope you can learn a lot from it, and really appreciate the effort you take to go all the way to Taipei.

Kind regards,

Rinz

 

[Manny]

Wow. Thank you Hazel for all that you do. I'm sorry to hear about your mom's stroke and I hope that she has a speedy recovery.

 

[Bobbette]

I look forward to reading everything you bring back to us! I love listening to your podcast.

Thank you for your commitment @Hazel and @Markku!!!!

 

[rtlewis88]

Sending peace and good vibes your way, @Hazel; thank you tremendously for giving so much of yourself to our cause!