Tinnitus Research Initiative (TRI) 2018 Conference

What are their thought's about finding a cure, can we expect one anytime soon? How far can they be to have an actual cure for all those like me are suffering badly.

 

This is so informative! Thanks for writing your experience.

 

@Starthrower I can ask what they have available for people to look at right now on CBTi, the study was presented by Elizabeth Marks, from the University of Bath.

We're putting out a post-conference survey, this question is definitely going in.

 

If the Prime Minister or Boris Johnson had tinnitus, heck even Jeremy Corbyn you can bet your ass they'd be a substantial funding towards a cure.....

 

Really? Because most GPs in Bath have no clue how to deal or are not educated in tinnitus, maybe she should get them all together and do a lecture.

 

Cheers Steve for doing all this legwork for us, truly a legend. Admire all the work you do for us <3

 

Quick note to say I won't be able to write an update until tomorrow probably. There's a conference dinner tonight so I'm getting ready for that.

Lots of talking to people today, getting the message out there about what we want to do, how we think we can help research. I'm meeting with some people tomorrow to look at translating some of the survey work into Dutch, so we can gather data from not only English speakers.

There was also a researcher interested in the data from the significant other survey we recently ran. I've sent that over and hopefully we will get a pro analysis on that sometime in the future.

Also people interested in the data sets from our other 2 large surveys, so it's all good so far

 

Thank you for sharing your experience with us, and thank you for all the work you do!

 

Thank you for the update and hope your talk went well .
Have a lovely evening.
Love glynis

 

Hi Steve,

I always check this thread first!! Write your blog when you have the time.

 

No pressure in the panel talk today, Rich Tyler and Pawel Jastreboff in the front row.... The room was a bit more filled than I was expecting. All went good though. I talked about patient frustration on how long trials and research take to surface, the need for more data collection from patients and ideas on innovating future conferences.

I’m going to try and get it done as soon as I can. Just in the airport now, Munich airport do a really good Thai.

 

You think you could fire a friendly spitball for me?

 

Ps. I never take food pictures and post them. I feel it’s important to point that out

I should also add. Highlight of the day for me was Will Sedley’s keynote.

He really lived up to the title of disruptive innovation. The presentation was on his own framework, based on looking at many discoveries in tinnitus research. It was excellent to see him roll through a lot of topics and show studies that contradicted each other. Highlighting that when you think you have something pinned down in tinnitus it can prove elusive.

I really like the way he looks at the problem. Anyway, more on that when I type up the information.

 

Oh, and also, without spamming messages into this thread..

The prize for:

• the poster most likely to influence current practice

Went to Jorge Simoes. His poster was an analysis of the data from our first large survey.

How cool is that?

The analysis of data provided by the people of this forum and the wider tinnitus community was judged likely to have the most influence on current practice.

This isn't a small thing. There were 3 poster sessions, with a reasonably full selection in each. Jorge was above many, many others, and there were some really innovative things on display when I walked the room each day.

 

It was interesting because he did make comment in the discussions and he acknowledged that TRT isn't for everybody. That was a general theme from everyone I talked to, they knew that even where they felt they had good results with their own particular therapy, that there were going to be those that do not benefit.

Getting on the plane now so no more posting until tomorrow.

 

I also think it would be worth gathering data for members here about tinnitus frequency among other things. Everyone here has tinnitus, but rarely do they state the frequency(s), age at onset, age at disappearance.

Just make it part of the deal of being a member here.

It would be good for researchers to understand how tinnitus interacts with the processes of just age related hearing loss and develop better hypothesis' to be tested on why age related hearing loss doesn't always cause tinnitus.

Is it possible age related loss can reduce tinnitus? Especially for those with very high frequencies >8kHz for example. I think then we could understand better how the brain compensates for these loses.

 

Safe travels home Steve. I am amazed at the time and effort you and Markku put forward for tinnitus research, awareness and support.

 

I think now CBT is taking over TRT and used more to cover the emotions, confidence, low mood and whìte noise generators and hearing aids where needed.
Looking forward to reading more of your TRI conference posts @Steve.
Love glynis

 

But isn't CBT what was used during TRT anyway? Also CBT sadly has a high rate of relapse after the therapy is concluded. I study psych and several of my lecturers say that it's not great for chronic illness, it's much better for adjustment disorder, such as a breakup. ACT is pretty good, but even then has some serious limitations. Therapy and WNGs just aren't enough for a lot of people.

 

We need a cure. No patches.

 

If you had a TRT and CBT therapist in front of you right after making that statement I can guarantee that an argument would erupt I know where you are coming from with the thoughts and I almost feel the same way sometimes, but they are different.

The thing that struck me again and again throughout the conference is that sometimes the intervention just isn't right for the person. It's funny to sit back as a non-professional and have the thought that everyone is really heading along the same path.

The primary aims seem to be to stop the brain from focusing on tinnitus. We have psych therapies, we have. audio therapies, we have pipeline drug therapies. Everything feels connected to me, it's almost like the field of physics, waiting for the Grand Unifying Theory. The majority of the work is focused in a similar direction, at least in my perception.

The problem is that people respond differently to different techniques. I believe that a combination of therapies could actually work for some people. You have to also tackle the root causes of the tinnitus so it has to be incredibly joined up, I don't think it's acceptable to say "you have tinnitus, now lets learn how to get used to it". We have to say "you have tinnitus, lets address the causes, ;learn how to approach it mentally, kill the stress response and interrupt the signal creation in the brain".

We as a community also need to learn that it's silly to say that therapy x is useless and pointless, but to appreciate that it is a step along the way and will work for some, it's just not right for us.

I am kind of hating myself for what I'm about to say as I do not count myself as a supporter of TRT (and I don't want to incur the wrath of TT members, I'm looking at you @threefirefour ), but here goes.... Pawel Jastreboff said in discussions on Friday that the patient needs to let go of the cure in order to progress with treatment. He is sort of right.

However, this is my own interpretation:

You need to understand that there isn't a cure right now, then find the current treatments that work best for you and allow you to get on with your life again. It will be a patch of sorts unless you have a direct cause that once tackled will ameliorate tinnitus. You have tinnitus, you need to do the best that you can with the available tools.

You should never stop lobbying for a cure. You should add your support and your voice and make sure that those who are searching for a cure have our full backing as a community. A cure is the number one priority, but you shouldn't just dismiss everything else in the mean time.

I say the above as a person with loud and intrusive tinnitus, and one who is quite frankly useless at treating myself. I have reached a point of habituation by just bumbling along, zero special techniques or approaches apart from some of my own audio experiments when I get time.

 

@Steve -
when can we read your reports from day 2 and day 3? Thank you and @Markku for everything you do for us.

 

I feel privileged in having been able to go.

I have docs open now. You wouldn't think it but they take hours to write. It's probably because I want to check out each thing as I go and make sure that I don't misrepresent any part. When you're taking notes during a presentation it's sometimes easy to misunderstand.

 

Congratulations!
I am convinced that surveys can increase knowledge.

 

Hi @Steve,
Did you come back with any awareness projects / campaigns the advocate team might be of help with?

 

At the moment I have several things swimming around my brain. I need to write everything down and make sense of it

I did talk to a guy from Action on Hearing Loss for a while, I think that we can develop some closer working ties on projects with them as well as BTA. If we can pick out some key points in the year (like you did with the mental health awareness one) we can all work together to maximise the attention that tinnitus gets. We probably need to get together a calendar in the advocate team and plan out the year ahead.

 

What else to expect from him? He's the father of TRT, that's his business.

In the conference did anything came up as how far are we away from a cure? Are they expecting to keep on using psychiatrist developments for tinnitus, but what about reducing or eliminating the sounds?

You were there, how you see it? Like are we still in diapers?

Sure, I won't stop lobbying for a cure.

 

We will ask this in a post conference survey so I'll post the results when we get that written and sent out.

From the people I talked to I would say there is a mixed response, depending on the field they work in. Of course the psychological ones are focused on the management of tinnitus. The others, or at least those I spoke to, I felt were very interested in innovations. They want to see reduction of tinnitus and they are experimenting with different things to try and do that.

In the panel discussion the figure of 10 years was brought up. I said that we didn't want to wait 10 years, we wanted things to be much faster. In reality though, it is all guesswork. We could have an ingenious development around the corner, or we could be waiting a lot longer.

One thing I can say is that the sheer degree of research happening at the moment is going to have an effect. We are pushing the boundaries further than they have ever been pushed and this is going to bear fruit.

 

And this is just the beginning of what you guys started a few years back!! I don't think people understand how much time and effort goes into creating something that isn't just a support board. Wow. I have such high hopes now. And it feels good to be back in the game.

Pretty soon I will be able to take more active steps here. I just needed to start back slow.

Jen

 

What about companies like Frequency Therapeutics and movements like the Hearing Restoration Project? Were there representatives from these groups at the conference or were they discussed at the conference at all? Frequency seems to be making pretty rapid progress in finding a way to literally restore hearing and get rid of tinnitus. And the Hearing Restoration Project gave a 10 year figure for a cure in 2014. What are your opinions on these?