This is so informative! Thanks for writing your experience.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.
View attachment 15632
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.
View attachment 15633
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.
We're putting out a post-conference survey, this question is definitely going in.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.
Disruptive Innovations in Tinnitus
Back in 2016 we had a presence at the TRI conference in Nottingham, UK.
Read our conference report.
In 2017 there won't be a TRI conference, but the one in 2018 has now been announced - and we'll be attending and reporting.
"We are witnessing a time period in tinnitus research with rapid developments of basic research, new clinical strategies for tinnitus treatment and enormous growth in technical innovations. Both public funding and industrial investments for tinnitus research have largely increased during the last few years. This development is also accompanied by raising awareness for tinnitus in society and increased attention of public and social media.
The conference entitled "Disruptive Innovations in Tinnitus" will give you a great opportunity to learn about the details of major breakthroughs in tinnitus. It will be a platform for knowledge-sharing, high-level scientific exchange, and inter-disciplinary networking for scientists, clinicians and technicians."
Time:
14-16 March 2018
Location:
Regensburg, Germany
Website:
http://2018.tri-conf.org/
@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.
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.
View attachment 15632
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.
View attachment 15633
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.
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.
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.Hi Steve,
I always check this thread first!! Write your blog when you have the time.
You think you could fire a friendly spitball for me?Pawel Jastreboff in the front row....
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.You think you could fire a friendly spitball for me?
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
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.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.
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.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
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.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.
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.We need a cure. No patches.
I feel privileged in having been able to go.
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?
At the moment I have several things swimming around my brain. I need to write everything down and make sense of itHi @Steve,
Did you come back with any awareness projects / campaigns the advocate team might be of help with?
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.
.
We will ask this in a post conference survey so I'll post the results when we get that written and sent out.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?
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.We are pushing the boundaries further than they have ever been pushed and this is going to bear fruit.
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.