1st World Tinnitus Congress and the XII International Tinnitus Seminar (May 2017, Warsaw, Poland)

Well, I guess having a look to that is enough to know where things will be in a year (and a month). Still no cure/help for the next 13 months.

 

Uh, thank you Markku! But so there isn't a conference like TRI in 2017? It was the first time that a lot of great researchers "united" to put together so much data about our pain. I hope that in 2017 there is something similar...

 

@Kyxwz That's correct. There is no TRI conference in 2017 because of the International Tinnitus Seminar. It should be a very similar thing though, a meeting of the prominent researchers in the field.

2018 TRI conference will be in Germany.

 

Ah TRI is every two years so. Your Tinnitus Hub team intends to participate in Poland? Or you will wait for German TRI?

 

Thank you guys for the information. This is encouraging yet it is also very depressing to know that they just intended to do something worldwide this late. This seminar should have been done 10 years ago.

Let's hope we won't need to see a 10th of it.

 

TRI is usually annual but I think they decided that this conference was too similar.

I want to go to the International Tinnitus Seminar, will plan for it later in the year. I want to be well prepared for it, take along some good quality research that has been analysed and really shows what you can do when you bring together the skills of a group of patients.

 

@Steve

Is there any way to be of a help with the seminar as a sufferer? I think I can not attend it but I do want to do something but I do not know what and how to.

 

I think there is.

We gather some important data that can make a difference to research and we make everyone there aware of it.

For TRI this year we had our survey, with over 5,000 people. We are analysing it soon with a Professor who also has tinnitus and we will design a follow up based on the results - taking on board ideas from the whole community here. It could lead to new insights that could influence research. To me that's a huge way for us patients to make an impact, collectively sourcing important data.

 

Great.

My hope is that this conference moves something from the therapeutic point of view. My fear is that they will talking about cure for "acute tinnitus" and give up the problem in the rest of the people... with this brutal philosophy: one day the last chronic tinnitus sufferers die so if we can stop tinnitus in acute phase we have reach the right goal for money and for future generations.

It's bad to say, but I fear that this could be happen.
Once someone solved the problem in acute phase... nobody any more considers the chronic patients.

What do you think about my fear?

 

I always thought that the real "customers" of tinnitus drugs would be the chronic sufferers. They are the ones fed up with the problem and tired of dealing with such a horrendous condition. In acute phase, people still got hope it may go by its own. You know the success stories we mostly hear starting like "I have a friend whose T is gone"... But ironically the writers of them are still here as an active member.

The companies have no idea how much money they are missing. Or they were not aware of this fact till now.

 

With regards to treating acute vs chronic the reason a lot of research is being done for the acute phase is that a treatment is much more likely to succeed. Chronic tinnitus is a complex problem and very difficult to treat. A successful drug for the treatment of acute tinnitus would be a positive thing for all tinnitus sufferers because it could provide funding for more research into more complex cases. It would also open up the market for tinnitus treatments.

 

We are the hardest group to treat but there is research looking at us and also why it becomes chronic and what mechanisms are at play. It is likely that any treatment will only be effective for a proportion of people, acute phase will be best done by treating the underlying cause as well as some sort of pharma solution.

Agree. We're kind of a forgotten condition. They are waking up to it now though and realising just how many people there are as potential patients.

 

Thank you for your answer Steve.

So you think that we will not be abandoned even if they found a solution for the acute phase? Or probably there will always be someone that don't respond to an acute treatment so my hope is that one day (5/10 years max I hope!) there will be something similar to the pill for high blood pressure.

RL-81, it's a very good hope but for now it's several years away from trial and distribution (as I showed you on Tinnitus Hub, the screenshot of Peter Wipf's answer).

I will give a try with Perampanel (work on glutamate receptors) until I am "new" (tinnitus seems to be chronic from 3 to 6 months).

 

Yes I do believe that. There will likely not be a single cure or effective treatment, unless we find something that will completely work on a section of the brain for everyone (unlikely in my mind). Even then if there are underlying problems, once you stop taking the medication the tinnitus may come back. So chronic tinnitus will stay a problem that needs treatment.

So I feel that we are never going to be able to say that medication X is the cure. It will be maybe medication X along with treatment Y and Treatment Z, which could be different combinations for many people.

 

If you look at the faculty (I think those will be the people that attend), I definitely miss some people like Tzounopoulos etc.

 

I plan to participate as I'm from Poland living 300 km far from Warsaw. Please note in case anyone wants to participate there's an early registration fee of 460 EUR till 01.11.2016. Later it becomes more expensive.

 

Hello everybody,

At 22 May 2017 - 24 May 2017 is the Tinnitus World Seminar in Warsaw.

An Austrian ENT (and tinnitus) specialist will be there.
He has a medical office just 50 kilometers away from where I live.
When the Tinnitus World Seminar is over, I will drive to his medical office and ask him what's the news about tinnitus and write it here.

Good idea?

 

Thanks for the literature, skimmed through it, lots of studies, some reporting moderate success.
Has anything stood out for anyone, particularly those with no HL?