Tinnitus Research Initiative (TRI) 2023 Conference

[Hazel]

TRI Conference Background

While we're still processing and editing all the footage and notes from the ARO (Association for Research in Otolaryngology) conference that I attended in February in Florida — more about that here — we're already getting ready for the next one. The Tinnitus Research Initiative conference is back, and this time it's in Dublin, Ireland, next week from 6-9 June.

As some of you will know, TRI is the biggest tinnitus research conference. The last real one took place in 2019 in Taipei. This resulted in a series of 18 videos — a massive project that we are still very proud of!

What's New This Time?

The conference in Dublin for the first time also includes an event for the general public/patients. You can read more about that in the brochure. And for those of you in the Dublin area (or willing to travel), you can buy tickets for the public event here. Let me know if you're going, it would be fun to meet up!

The really exciting thing is that, for the first time ever, Tinnitus Hub has a speaking slot! We submitted an abstract and were accepted. Initially, I was only invited to speak at the separate event for the general public (see above), but at our urging — and I must say Tinnitus UK also played a role here — the conference organisers incorporated a session on "public and patient involvement" into the main conference. We're very happy about this, because it means we get a chance to present and pitch our ideas directly to an audience of tinnitus researchers (assuming they come to the session, haha — it is after all the very last session of the conference!).

What Will Tinnitus Hub Be Doing There?

You can check out my presentation for the "public and patient involvement" session. You will notice that I've incorporated a lot of data from surveys that we conducted among this community. I hope you will all agree with our messaging, the aim after all is to represent the voices of this community. Let me know what you think!

I am still working on my presentation for the general public, ideas are welcome.

What Can You Do?

Provide Your Input

You can find the full information about the TRI 2023 conference, including the program, here. As usual, we will be seeking to attend the most interesting sessions, take notes and report back to this community. Well, I say we, but this time it's just me so it will be a challenge, as I will have to pick between many parallel sessions. In addition of course, if the opportunity presents itself, me and my GoPro will catch some interviews as well. So take a look at the program and speakers and let us know what YOU think I should focus my attention on

Support Our Cause



As usual, these things cost money. When I went to ARO, we were able to cover at least some of the costs from your kind donations, and we're hoping for the same kindness this time. Rough cost breakdown is:

• EUR 500 for the conference ticket
• EUR 600 for hotel (4 nights)
• EUR 600 for flights
• EUR 350 for incidentals (taxis, meals)

Total costs thus will be around EUR 2050 (~$2200 USD).

NEW! We are now a registered 501(c)(3) nonprofit in the US, allowing tax deductible donations.

My time is provided for free, I'm taking four days off from my day job for this event. Please wish me luck, and let's get the conversation here going; looking forward to hearing from you!

 

[2noist]

I gave $25!

 

[Joshua Macleod]

Just donated a lil bit, hope it helps. I was in Dublin for a microbiology conference last week - if only it were timed better I'd have popped over and said hello!

Thank you for attending these events and best of luck with your presentation. Slides and data look fab.

 

[Jupiterman]

I gave £12.

 

[Leila]

I chipped in, too. Thank you very much for your time and effort, you are doing an incredible job here!

 

[Hazel]

Thanks for the generous donations so far, you guys rock!!!



The door is still open for input on my 'mission' next week

 

[InNeedOfHelp]

The door is still open for input on my 'mission' next week

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

 

[Ngo13]

Thank you for doing this. The presentation looks great! I looked at the program and I don't think the sessions on CBT or psychology will be that informative. 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.

 

[Josh59]

Hello @Hazel, I have just contributed.

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.

 

[Tom Okay]

Great news, @Hazel! I sent a little too and I hope you'll get the expenses covered. Have a good time and thanks for going to the conference on our behalf — and even giving a talk!

 

[Damocles]

and if I don't see that bar full before next Tuesday, I'll just assume the majority of us like living with the permanent, ever worsening screech of a creature from the darkest depths of an unnamed realm, inside our heads.

 

[Utdmad89]

View attachment 54958

and if I don't see that bar full before next Tuesday, I'll just assume the majority of us like living with the permanent, ever worsening screech of a creature from the darkest depths of an unnamed realm, inside our heads.

Some of us don't have an income because of this condition. No need to shame people.

 

[UKBloke]

Done.

 

[Toby1972]

Do good and talk about it.

 

[Damocles]

Some of us don't have an income because of this condition. No need to shame people.

I've been unemployed 12 of the last 14 years. Currently a student with a 4 figure debt, soon to become a 5 figure debt. The 2 years of those 14 I worked, were part-time minimum wage that wouldn't have paid my journey into the office each week, only for the fact I worked from home.

If I'm the only unemployed tinnitus sufferer who can pull together a couple of quid to donate to a future where we can all work and study as much as we like again, then do please consider us all royally f*cked - because in case you didn't get the memo: no one who doesn't have permanent severe tinnitus, gives a sh*t.

 

[ErikaS]

Thank you, @Hazel, for being the voice and presence of this community! I donated but will keep my eye on the bar if more is needed.

 

[ZFire]

If we get to $1100, I'll throw in another $100.

Make it happen.

 

[Jakob]

Donated 25€. Thanks for all your hard work, it's really impressive and I'm deeply grateful.

 

[Nick47]

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?

 

[JPGL]

I just donated $60. I hope I arrived on time. Thank you for your extraordinary work. I really appreciate it.

 

[ZFire]

Good work everyone. I'm a man of my word. Another one

 

[tpj]

Done! Good luck @Hazel.

 

[dipp]

I donated a bit. Thanks for your work.

 

[DeanD]

Just added a donation of $100 - looks like you're getting close to the target.

Tinnitus Talk is the only place providing a true voice and hope, which is incredibly important to any sufferer out there.

Hope the event goes well.

 

[Damocles]

If we get to $1100, I'll throw in another $100.

Make it happen.

Good work everyone. I'm a man of my word. Another one

View attachment 55027

▲ This is why we call him "ZDaddy".

 

[brixenbrixen]

I donated

But just out of interest: why did they want you to pay the conference fee? @Hazel is a speaker, plus she is on the scientific committee of the conference. I have also organized events and speakers normally get their ticket for free, of course.

Please don't misunderstand it: I think the amount of travel cost is justified, it is a really sharp amount regarding hotel costs etc, you are clearly trying to keep it at a reasonable level. I appreciate it and your voluntary work!

So have a good conference! We are curious about your reporting!

P.S. Another idea for the next time: maybe you can talk to someone about this, but it would be nice if there was a livestream or videos from the keynotes.

 

[Hazel]

But just out of interest: why did they want you to pay the conference fee? @Hazel is a speaker, plus she is on the scientific committee of the conference. I have also organized events and speakers normally get their ticket for free, of course.

Please don't misunderstand it: I think the amount of travel cost is justified, it is a really sharp amount regarding hotel costs etc, you are clearly trying to keep it at a reasonable level. I appreciate it and your voluntary work!

It's a fair question! We were ourselves also disappointed to learn we would have to buy a ticket. I specifically asked whether we could not get it for free, considering those points you mentioned, but they declined. In fairness, it's not such a big conference and if they would give all the speakers free tickets, there would not be many paying participants left. But still... maybe we should be stricter next year and just not attend if they won't cover the fee.

The hotel room was booked through the conference organisers and it's actually — fun fact — student rooms. I guess all the students are away for the summer so they can rent out the rooms

P.S. Another idea for the next time: maybe you can talk to someone about this, but it would be nice if there was a livestream or videos from the keynotes.

That would be wonderful and I can certainly ask, but I somehow doubt they will go for it. Academic conferences tend to be pretty restrictive about this kind of thing because some presentations include unpublished data, and I guess in general they're just not so used to being in the public eye.

 

[obnoxious]

why did they want you to pay the conference fee? @Hazel is a speaker, plus she is on the scientific committee of the conference.

That does not seem to be the case, or at least not any longer. I'd say after the pandemic? I once gave a pre-recorded talk to a (top tier) workshop and I had to pay the fee to see my own pre-recorded video lol. But usually the university of affiliation covers such fees.

EDIT: I threw in some 150 worthless Swedish Kronor (the slump is real), but I kept "anonymously" donating during the past 2+, on a monthly basis.

 

[Nick47]

Session 2: Cognitive Behavioral Therapy

Two presentations on CBT: one on internet-based CBT and another on group vs. single CBT. God almighty, this smacks of retrograde nonsense and government-driven CBT on the cheap. I let them know my thoughts as have a few others. A complete waste of a time slot.

Do the researchers actually consult the tinnitus community? Many on here with sound sensitivity and hyperacusis have the worst imaginable tinnitus that is exasperated by artificial sound. Makes me want to put a baseball bat round these imbecile heads. Let's survey mild sufferers with stable tinnitus - oh look, positive results.

 

[obnoxious]

Session 2: Cognitive Behavioral Therapy

Two presentations on CBT: one on internet-based CBT and another on group vs. single CBT. God almighty, this smacks of retrograde nonsense and government driven CBT on the cheap. I let them know my thoughts as have a few others. A complete waste of a time slot.

Do the researchers actually consult the tinnitus community? Many on here with sound sensitivity and hyperacusis have the worst imaginable tinnitus that is exasperated by artificial sound. Makes me want to put a baseball bat round these imbecile heads. Let's survey mild sufferers with stable tinnitus - oh look, positive results.

I mean, in some sense it is not even surprising. Every academic / scientific field has a gang of nostalgics that keeps playing with (and further raping) ideas that are dead and have been for the past 10-40 years, just because that is the only thing these people are capable of. They had a minuscule half original idea, maybe stolen from Freud or similar charlatans, when they were young "researchers" and that's all - now they keep vomiting the same shit over and over by changing a bit the flavour to give a better camouflage impression.