Tinnitus Research Initiative (TRI) 2018 Conference

They must be speaking of a different ailment.

 

I'm going to be at the conference in Regensburg so if anyone on TT has input or things they may want to know about some of the presentations let me know.

We'll put out a piece on the conference so if there are sessions that anyone would like me to attend than others please comment here. This is of course if the session is going to be something I am capable of understanding enough to give feedback on

I'm on a couple of sessions so if there is input to the subject (that can be shared in polite company) then please let me know. The sessions are:

Community Science: How can Participatory Research Improve our Current Research Strategies?
(10 minute talk on Hub / TT and how we can conduct surveys and projects with users / patients to give big data in small timescales that inform research)

Panel discussion: on the future of tinnitus research - Identifying gaps, bridging sectors and innovating science
(open discussion panel, any input here can be presented in the discussion)

Link to the scientific program http://2018.tri-conf.org/index.php/scientific-program/time-schedule-and-scientific-program

 

What exactly will be discussed in this conference, and have you been to one of these before?

 

It sure seems like the tinnitus support systems is much greater that what's available to us here in the colonies. I wish we had somethings like that in the US.

 

Fascinating yet unfortunate when they're having this. I hear mutebutton may begin it's second trials within a month. If it's as successful as Signal Timing has been so far, then because the Tinnitus conference is so early, they might miss an important paradigm shift...

 

Just looked at that scientific program of the TRI 2018 conference.

I see a lot of therapies mentioned for 'treating tinnitus' like:

Cognitive behavioral therapy
Sound therapies
Hearing aids

Seems to me this was the exact same thing talked about 10 years ago, this doesn't treat tinnitus, just helps manage it.

Sort of depressing seeing they are still talking about this and doesn't seem to address anything new to actually TREATING tinnitus itself.

 

Great point and this is why I complain about things like TRT competing with an actual cure.

 

This is very impressive Steve and Markku. Tinnitus Hub is an actual non-profit organization. And it seems to be growing.

What is it like actually being in the conference with all the different scientists and studies and professionals?

Do all the different representatives get along? Do they argue like some do on the board? Are some so obnoxious and not open to other ideas or aspects presented?

Hope this is an appropriate question.

Thanks!

Jen

 

They’ll have a great time, trip to Germany, all expenses paid! No need to argue, life is good!
And since there’s nothing new to say they will just dig out notes from last conference in hope nobody notice recycled information.

If it was up to me I would give each and everyone of them (except @Steve as he already has an inbuilt model ) a headphones playing tinnitus sound.

Maybe then they would understand what’s it’s like and got off their asses and do some real stuff!

@Starthrower you would be a good choice of guest to share the devastating experience tinnitus can cause that you witnessed first hand

 

In the experience I have had so far everyone does get along. I can honestly say that to date I haven't met anyone within these conferences that has been anything but nice and approachable.

I think that it helps being a researcher. People may have their own ideas of treatments but ultimately they want to understand what works. The atmosphere feels like one of cooperation (of course I may not be privy to some of the inner workings).

The difference to being on a board could be where a person has a single minded goal or attitude and will not listen to other opinions. I've had my share of business situations with individuals who won't see any opinion but their own

Actually, from my conversations I've found there is a seemingly disproportionate number of them that have tinnitus. Without naming names I know of a couple that have it quite severely too.

There is always going to be an element that this is true for. They get in work to satisfy their budget requirements.

Maybe because I gravitate towards a certain type of person (those that take action rather than just talk a good game) I don't particularly experience it. I'm sure it's out there though, it's a problem in every field. I personally don't want passengers, I want change makers.

 

Thanks for the reply Valeri. Actually, that should be a part of the conference in some way. Have the tinnitus sounds played for one minute. That is a good attorney move when talking with the jury - this is one minute of time representing the pain the victim felt.

One minute is a long time when you are sitting there.

Which could lead to the very difficult and delicate issue I experienced from start to finish.

When I would talk, the message back would be one of disbelief because of the lack of published studies or studies proving otherwise - the more insulting remarks blaming it on other health issues or depression.

That is good to know. Thank you.

 

Well it is good that you checked this idea out first. Your time is limited and needs to be precise.

I wonder why though? Why would their reaction be harsh?

 

A few reasons come to my mind:

1. It's probably not the first time that this happens to them. It's not original. I've seen it done before. They may be tired of the "listen to the T" experience.
2. It brings no value to them. They are researchers. They are already committing time to help T research. They don't need to be convinced: they already know this is a condition that needs a cure.
3. You don't need to experience the pain to feel empathy. Do people with Crohn's disease feed Milk of Magnesia to the researchers so they can feel how miserable it is to have diarrhea?

These guys are the wrong target. If the goal is to show how awful T is, then they are the ones who need to hear T the least. It's those who aren't aware of it that need to learn, and even then, learning through pain is questionable.

In addition to this, giving someone the experience of T for one minute doesn't create the same emotional response that a T sufferer has. If I knew that the sound was going to stop in 1 minute, or even 1 hour, or that I can always take out the headphones when I'm sick of it, I wouldn't have much anxiety about it. The experiment can actually backfire as they can think "well it's not that big of a deal" for that very reason.

 

I recall reading, it has been a while, that the TRI was founded by a man who had/has intrusive tinnitus and wanted to do something regarding focus on tinnitus research? And he put up his own money to start the organization?

This is all from memory and looking over their website I couldn't find that information. So I could be wrong.

Hum... why did two guys create Tinnitus Hub?

So does the fact one has experienced tinnitus and knows the true facts actually matter?

Sometimes. I guess that is why I wondered why the reaction could be harsh. Just my thought - nothing else.

But yes, giving out the sounds of tinnitus on others can be worthless in some situations.

 

Yes you are right.

I don't think that the guy who funded it is involved still. He was responsible for something that has really pushed research onwards. so massive kudos to him.

The likelihood is that he improved and didn't feel the need to continue, knowing that the TRI could be self sustaining after his initial funding.

 

Thanks Steve. Glad my memory is still intact! Sometimes certain things stay in my mind because I remember being impressed by his actions. Organizations have a way of taking shape and moving forward and it seems to me that TRI is impressive.

He made an impact that just skyrocketed. Hope he is doing well today.

I have been out of the loop for quite a while.

I am not arguing at all for the need to experience the tinnitus sound by the researchers for empathy or an emotional reaction. It is just one of those things I "wonder" about. The goal would not be to show how "awful" tinnitus can be but maybe the experience would provide possible paths to answers toward their research.

 

Thanks Markku and Steve.

And sincere thanks to Matteo De Nora. I love to know where is he now.

 

I did a little google search only to find that Matteo de Nora is such a gentle giving soul. His story interests me. I wish there was a way to contact him just to say thank you and find out how his tinnitus is today. He is evidently off sailing the ocean.

 

So a couple of weeks till the TRI conference. Is there anything else info wise through the surveys here that you need?

Hopefully on this side of the world the ATA is aware of the efforts Tinnitus Hub is putting forth being involved with research efforts.

 

How are you doing so far at the TRI conference Steve? Anything to report yet?

Had a morning run thought. Is there any international tinnitus organizations? There is the ATA. There is the BTA.
Is it possible for Tinnitus Hub to grow as an internationally recognized non-profit tinnitus organization? For example, to branch out into the USA?

 

Hi @Starthrower

I am typing up a day 1 report at the moment. So far it's been excellent. There are a few people here using our data in presentations, it helps make things worthwhile when you know that the work you do is valid beyond the bounds of TT.

We are cooperating with a few others on the Tinnitus Week initiative, bring as many organisations together as possible. I guess that in a way we are an international tinnitus organisation already, we have a very broad base of users. A little over 50% from US, over 15% UK and so on in countries that have good English speaking citizens.

We have talked a little about becoming a charity, though we haven't taken that too far right now. This is such a personal project that I think we're probably a little wary of having a board that can change over time and potentially dilute or radically change the vision of the work we do.

 

TRI Regensburg 2018 Conference Report

Day 1

I forget that my tinnitus can play up a little after long journeys. It’s not so bad after a night’s rest but still a bit louder than normal (whatever normal means, it’s hardly normal having tinnitus), what with the airplane dehydration and travel noise. I can’t really complain at 8 hours from my front door to a hotel front door in Bavaria, you have to think of our not too distant ancestors where a journey like this would be in the degree of weeks at best.



The setting of Regensburg is beautiful, such an amazing place to walk around and I got to walk through the park to the conference, the birdsong was most welcome to my tinnitus.

Introductions

Introductions came from the University and from Berthold and Winny of the TRI. Tinnitus Talk were even mentioned in the introduction by Winny! There was also a nice introduction from a representative of COST. Without the COST action we would not be at the conference, they pay the travel expenses that allow us and many of the other EU representatives to attend events like this. The COST action TINNET is a big part of bringing patient opinion and experience to the forefront of tinnitus research.

The first of these meetings was 12 years ago. At that time they say there closer to 30 people, today there are 300 attending. They thanked Matteo De Nora for beginning the whole process with his financial support. Without his substantial contributions tinnitus research would not be where it is today.

Morning Session

I can’t go into too much detail on all of the talks right now, so I’ll give general impressions of the day. This is purely for time and stomach related reasons, I’m typing before I go for dinner and I have to practise my talk ready for tomorrow.

The first keynote from Tobias Kleinjung had the slightly controversial title “Can Cochlear Implants be a Cure for Tinnitus?”. The short answer is not really, unless you have a profound hearing loss, and then temporarily. The primary complaint for a CI is hearing loss, generally over 70dB. Tinnitus is the secondary.

One interesting thing I took from this was that when you stimulate one side only with a CI, in single sided deafness, the “good” hearing ear can also experience a reduction of tinnitus. Suppression is only when using the CI, but it can sometimes last for a time after it is turned off, a kind of residual inhibition.

They aren’t certain what the reason is behind this. It certainly wouldn’t be a recommended route for those with normal hearing, but if the mechanism is identified it could give data that would really interest me and could inform future treatments not based on CI.

I sat in on the neuromodulation session next. A lot of very interesting presentations on modulating the brain. Richard Tyler presented on findings from MicroTransponder’s Serenity System, the implanted Vagus Nerve Stimulation device. I asked later about the sound stimulation they used, interestingly across the audio spectrum, rather than centred only around the tinnitus frequency. Although they have around an octave centred on the tinnitus pitch (as matched by a test) that has no sound played.

There were several sessions on rTMS. I couldn’t do them justice without first understanding more about it as I’m not 100% familiar with the intricacies. It was very interesting to see that they have come from a position that it may not be viable, to one that it needs to be designed specifically around the patient. Future projects will look at the comparison between rTMS and direct electrical stimulation.

The final session was on neurofeedback. Based on the findings that people with tinnitus have reduced alpha activity in the brain and an increase of Delta, they tried to influence the Alpha and Delta to separate.

They use visual feedback for their tests; a UFO travelling along a tunnel, alpha brainwaves control the speed and Delta controls direction. The aim is to balance things for a smooth ride. There was no placebo group for the data presented, however they did find that an increase in Alpha activity in those with tinnitus corresponded to a decreased loudness of tinnitus and decrease of tinnitus distress. When they followed up at 3 months the loudness had returned to baseline.

It’s a passive process, rather than training a person to focus on Alpha or Delta waves. They found that when the patient tried to focus on a particular brainwave pattern they struggled to control the UFO.

Lunch

At lunch I got talking to a couple of Doctors from Ireland. They don’t practice or research tinnitus, but they both have it and have a family history; they attend for the understanding of the current state of research. Really interesting to talk to them, patient to patient, about their impressions.

Straight after lunch we went into the poster sessions. Lots of excellent posters, including the ESIT students. The data from our 2015 survey features in the poster and work of Jorge Simões. Excellent to see his development of it, looking at the treatment successes and relationships between them.



In the centre of the room there was also a really cool iPad demonstration of our treatment data. An excellent student (apologies I forget the name) has created an interactive graphic showing all of the treatments we asked about. You can look at the relationships in several ways, but in essence you place your finger on a treatment name and it displays the connections to other treatments that helped or didn’t. I’m not describing too well, I got a brief video but tomorrow I will do a demo and post the video for you to see.

I also got chatting to a couple of people interested in the next survey project we have for trying to profile tinnitus, then test how certain treatments work to see if we can predict success by understanding the case history. I hope we will get to work with them on the project, they want to do the same thing as I do so I think it may happen.

Afternoon

The afternoon keynote came from Hubert Lim. He presented work in animals and non-invasive neuromodulation. The talk was around sound + body stimulation to treat tinnitus. He showed a series of brain scans from stimulation of the body, activating the inferior colliculus. The question was can you control plasticity effects in the auditory system with sound + body stimulation? The evidence certainly appears to support the theory.

It was interesting to note that they gave stimulation to Guinea Pigs via the pinna. They would have used the tongue, but it was too hard because of trying to keep the stimulation device on the animals. Made me think, this seems a positive note for the approach that the Mute Button device has taken.

I really wanted to go to the cortical networks session, but in the brochure they had a summary of each talk and I knew it was going to be too technical for me to grasp. It’s an area I want to understand more about but I’m not quite at neuroscientist level yet...

The tinnitus CBT session was good. I know that there are people that aren’t a fan of CBT in general, but you just can’t deny that it is well researched and has a good success rate. It isn't for everyone of course. The evidence presented adds to that knowledge. CBT from a recent Dutch study is now available as a treatment for tinnitus on the Dutch health care system.

One of the talks in the session revolved around CBTi (CBT for insomnia). Looking at a stat of 50-70% of people with tinnitus reporting sleep disturbance it’s definitely something that can help a lot of people. Their initial work has shown good results, they have a Randomised Controlled Trial completing next year.

In the coffee break I chatted to someone who has been data mining from the forum. Unfortunately his talk is in the opposite session to mine tomorrow, so I’m going to try and get a copy of the slides and put the information up on TT.

I went to the session for the COMIT’ID project after. We are currently helping out the discussions by hosting a private forum for participants to debate and agree certain aspects of the outcome domains. We split into groups and debated one of the definitions. It was a very useful session and one that gave me a few new perspectives. It also got quite a few people interested in taking part in the online discussions around the definitions.

Shamefully I didn’t realise that there was still a final keynote, so I headed off. I was looking forward to it too. So, if Fatima Husain reads this – I’m sorry. I will try and catch up and get some info from her at some point if I can.

End of Day 1

I haven’t been able to type up everything (even though I’ve typed a lot) but the general impression is very good. I’ve met a lot of people and have seen the data we’ve collected here through Tinnitus Talk cropping in in several areas. To know that the work we have done is contributing to research is exciting. The information provided by all of the people that have taken part in our surveys is being put to very good use. There will be more, and we will make sure that the patient voice and patient data are getting out there.

Okay, so this took longer than I thought. I ended up with a fast takeaway and pushed through writing while it was still fresh in my mind.

 

Thank you @Steve on sharing your day one TRI Conference information with us.
Hope you sleep well and good luck tomorrow...
Love glynis

 

@Markku wow the twitter feed is amazing!

Maybe one day I will lift my self-imposed ban on all internet social media sources. I am just now coming out of my cave posting here and getting a bit more confident each day.

@SteveH your blog about the conference is so informative. The setting looks very serene. Great to see this organization getting attention! All the hard work you guys put in over the years for this cause is making a difference and being noticed.

Really shows what can happen when you do not give up.

This interests me:

For some reason I would think the statistic for sleep disturbance would be higher. The study will be outcome will be interesting.

This would be cool!

Cannot wait for the next update. Thanks!!