ESIT — Landmark Partnership Between the Patient and Research Community

[Tinnitus Talk]

Hi all,

As associated partners of ESIT (European School on Interdisciplinary Tinnitus Research), we recently had the opportunity to take part in its kick-off meeting in the beautiful Herrsching am Ammersee, near Munich. Steve took a flight out and met with a large selection of the participants.

​

Each member of the group introduced themselves in a brief 3 minute spot and gave a little information on their role within the project. This was an excellent opportunity for the group to get to know one another. We also got a rundown of the 15 PhD's, the recruitment processes and had time to talk to one another, and of course have some fine German beer by the lake.

The academic, professional and partner organisations selected are from a broad cross section, so the discussions and future collaborations were exciting. It was a big achievement for the organisers to get so many people to attend this first meet, much kudos is due.

We discussed the aim to understand the individual differences in tinnitus. It is acknowledged that a uniformly effective treatment for all types of tinnitus is unlikely.

At the moment there is low comparability between research so it's difficult to know how effective different treatments are when compared to each other. As part of the TINNET project and continuing the theme to ESIT this is being addressed. The results of the COMIT'ID study will play a part in future research and the development of a new standard.

What is ESIT?

• 15 PhD students working on cutting edge tinnitus research at several training institutions
  
• Collaboration from universities, partner organisations and companies across the EU
• Tinnitus Hub (Tinnitus Talk) is one of the groups representing the patient
• More information on ESIT's website

What is our part in ESIT?

We are part of ESIT as a partner organisation, principally to help disseminate the information and bring the research conducted and the end users (those of us with tinnitus) closer together.

As the largest online forum for tinnitus, we have 20,000+ members and over 2 million yearly visitors. While it's good to see something you feel passionate about growing it's also hard to see so many people in the world searching for help. With our role in ESIT we are able to showcase emerging research and the flow of new minds into the field of tinnitus.

We hope that this project, along with the greater understanding we can bring between researchers and those with tinnitus, will give more hope to those that are desperate to see tinnitus taken more seriously.

 

[ofaisalo]

You have all my support and prayers

 

[Steve]

I probably have a tendency to look more positively at things like this than most, which is probably due to getting to talk to a lot of the researchers involved and getting a first-hand description of the research topics. I came away feeling really good about the whole project.

I know that there will be various opinions of the topics, with some appealing more than others to each individual. What can't be played down is the scale of this project and the impact it has for tinnitus research in general.

Funding for 15 PhD's in tinnitus research is unprecedented. The achievement of just getting the funding is a huge step forward for tinnitus research. The extra attention it brings to tinnitus is for me exciting and groundbreaking. As someone who believes we will never get a single cure, rather a selection of treatments that work for individuals and their types of tinnitus (and give a cure), having 15 areas scrutinised at once like this is an amazing result.

Our role as people with tinnitus and patients looking for a cure is to support these students and do what we can to highlight their work. We're developing a new section here at the moment so that we can showcase the projects and keep the community up to date.

By giving our support and showing academics, industry and founders how important research is, we will advance the work into a cure.

 

[NinPhan]

Godspeed you 15 PhDs! You are my heroes.

 

[TheeSeer]

I sincerely hope that the word "interdisciplinary" is the axis around which research will focus.

There is no "Silver Bullet" and this has been the flaw up until now.

Tinnitus is merely a description of symptoms not a target-able disease or pathogen.

Each person must go through a thorough staging phase including but not limited too a physical exam for obstructions, tests for bacterial, viral, fungal and parasitic issues a hearing test and a vascular exam for blood flow.

The Doctors must be retrained to actually listen to the patient as too the origin of the problem.

Only after this is completed can "sound therapy" of any type be truly effective.

Finally a rebuilding of brain chemical imbalances may need to be undertaken with as few strong "Opioids" as possible, keeping in mind that any strong drug that crosses the blood brain barrier is likely to cause dependence and eventually "Bounce Back" if discontinued.

 

[Gareth Gravell]

Although I welcome the hard work being done by the clever medics and respect the effort they put towards research, I feel that any kind of cure will be in the far distant future and not within my lifetime.

Tinnitus is such a complex phenomenon that I really believe that more research on coping mechanisms would bear more fruit than actual research into the condition itself.

 

[Andrew Beaven]

As a scientist I disagree with you Gareth. In my many years of research I have found that after a lot of hard work (deductive and inductive) and then an intuitive leap we find answers to things. ... and then lots of time trying to figure out why the answer works.

Knowledge is exponential, all research into the human body will feed through.

 

[Markku]

I feel that any kind of cure will be in the far distant future and not within my lifetime.

I personally think research is very much welcomed even if it didn't produce ways to completely ameliorate tinnitus in my lifetime. The future generations and researchers of that time could greatly benefit from the increasing number of studies and findings occurring now and in the near future.

Furthermore, I don't personally dare to wish for a complete cure. It's a strong word, expecting a lot, wanting a lot. It happens if it happens. No doubt I am grateful for every single researcher working toward that goal, and will support them till my last breath.

I'd be very happy with a 50% reduction in my tinnitus loudness, heck, even a 30% reduction would be noticeable at least for me.

 

[Paulmanlike]

The most common cause of tinnitus is through noise exposure - and there are several threads on companies working to restore hair cells and damaged synapses.

We still don't know if this will fix the most common cause of tinnitus but they are not far away from clinical trials?

Was this discussed at the ESIT meeting?

 

[Steve]

Was this discussed at the ESIT meeting?

We would have needed an awful lot longer to get into that - this initial meeting was to introduce all of the partners and discuss the process so far.

Unfortunately research into regeneration isn't a part of this project. It is probably beyond the scope here, a single PhD may not be something that can get close to the large scale research currently going on into hair cell regeneration and the like.

I am pretty sure it will be on the agenda at the TRI conference in Regensburg, March 14-16 next year.

 

[Steve]

As a scientist I disagree with you Gareth. In my many years of research I have found that after a lot of hard work (deductive and inductive) and then an intuitive leap we find answers to things. ... and then lots of time trying to figure out why the answer works.

Knowledge is exponential, all research into the human body will feed through.

Very well put.

People expect things to happen fast, we're all going through this disorder and we want answers. What is often missed is that it takes a whole load of hard work and dedication to get to the eureka moments.

 

[rllavane]

Hello there.

I would like to be informed about the ESIT. You already have my email and other data.

So please, feel free to keep me informed.

I have been having Tinnitus since 2006 in both ears.

Yours truly,
Rafael E. Llavaneras
Caracas - Venezuela

 

[Steve]

Hello there.

I would like to be informed about the ESIT. You already have my email and other data.

So please, feel free to keep me informed.

I have been having Tinnitus since 2006 in both ears.

Yours truly,
Rafael E. Llavaneras
Caracas - Venezuela

We are working on a new section here to showcase this project so everyone can be kept up to date. This section is also going to be designed so that we can better highlight the science and research around tinnitus.

We will send a newsletter out when it's ready, so you can keep up to date.

 

[Scott Ross]

I'm excited at the possibility of something good coming out of the research as any reduction in the ringing would be welcomed.

I've been a graphic designer for over 30 years and I'd like to offer my services free of charge to both Tinnitus Talk and to ESIT.

This is my first post and I've had chronic tinnitus since 2005. The only time I don't hear it is when I'm sleeping. I had it off and on for a number of years before that.

I've gone through everything you can imagine to rid myself of this horrible condition. I get two and sometimes three different tones going at the same time.

One is a very high pitched tone that reminds me of a digital fire alarm.

The other one that's always present is a slightly lower tone. Both are extremely loud and even though I wear hearing aids, I have trouble hearing above the noise.

When the third sound shows up, it's a much lower tone and sometimes sounds like a whoosh.

I know you've probably heard every symptom from the other members but I'd like to share mine so I know I'm not alone.

The severity goes up and down and I've developed my own scale from 1 to 100 (worst).

Most days are around 50-60 but lately it's been 80-90. I'm so happy when it's only 30-40 but it doesn't happen often.

When the ringing is really bad, I have trouble concentrating or focusing on a project. I'm usually a pretty happy, friendly person and not prone to mood swings but when the ringing is loud, I get very irritable and I'd rather be alone.

I also get episodes of anxiety and have a hard time breathing.

Other times, I get nauseous. Does anyone else experience these?

 

[Paulmanlike]

I'm excited at the possibility of something good coming out of the research as any reduction in the ringing would be welcomed.

I've been a graphic designer for over 30 years and I'd like to offer my services free of charge to both Tinnitus Talk and to ESIT.

This is my first post and I've had chronic tinnitus since 2005. The only time I don't hear it is when I'm sleeping. I had it off and on for a number of years before that.

I've gone through everything you can imagine to rid myself of this horrible condition. I get two and sometimes three different tones going at the same time.

One is a very high pitched tone that reminds me of a digital fire alarm.

The other one that's always present is a slightly lower tone. Both are extremely loud and even though I wear hearing aids, I have trouble hearing above the noise.

When the third sound shows up, it's a much lower tone and sometimes sounds like a whoosh.

I know you've probably heard every symptom from the other members but I'd like to share mine so I know I'm not alone.

The severity goes up and down and I've developed my own scale from 1 to 100 (worst).

Most days are around 50-60 but lately it's been 80-90. I'm so happy when it's only 30-40 but it doesn't happen often.

When the ringing is really bad, I have trouble concentrating or focusing on a project. I'm usually a pretty happy, friendly person and not prone to mood swings but when the ringing is loud, I get very irritable and I'd rather be alone.

I also get episodes of anxiety and have a hard time breathing.

Other times, I get nauseous. Does anyone else experience these?

Yes.

 

[Denise.lucerne]

Hi Scott,

I understand exactly what you are going through, one suggestion I have which is a life saver for me, is to listen to white noise to match your tinnitus.

For me that is usually the sound of the shower or heavy rain falling.

I have many apps on my iPhone (just google tinnitus white noise) and I use a wireless ear bud that I pair to my iPhone (make sure it has the ability to to receive music) and I can listen all day long to different white noises dependent on the severity/pitch at that time.

I have just one ear piece and use it in my worst ear it is enough distraction even if the other one is firing off. It wasn't cheap, close to $100 but it's worth every cent. Its charge lasts for 11 hours. It has the added benefit of receiving calls at the same time.

Hope you find this helps.

 

[Niklas]

I personally think research is very much welcomed even if it didn't produce ways to completely ameliorate tinnitus in my lifetime. The future generations and researchers of that time could greatly benefit from the increasing number of studies and findings occurring now and in the near future.

Furthermore, I don't personally dare to wish for a complete cure. It's a strong word, expecting a lot, wanting a lot. It happens if it happens. No doubt I am grateful for every single researcher working toward that goal, and will support them till my last breath.

I'd be very happy with a 50% reduction in my tinnitus loudness, heck, even a 30% reduction would be noticeable at least for me.

I agree. I would be happy if I could get a medicine which prevents tinnitus from getting worse. That would be so nice to be able to enjoy concerts and cinemas again without all the worrying.

 

[Roundhouse]

I feel lucky that my brain tunes out my tinnitus most of the time. That is until I read something like this and then it screams for a while.

Mine started out of the blue four years ago, took most of a year to get used to and seems so deep in my brain I can't imagine taking a pill and it stopping. But I hope I'm wrong!

Amazing strides are being made in the medical sciences. Best of luck to all.

 

[Christophe_85]

I agree. I would be happy if I could get a medicine which prevents tinnitus from getting worse. That would be so nice to be able to enjoy concerts and cinemas again without all the worrying.

I would say just to hear silence again...

And to stop being really afraid about any worsening of our tinnitus...

 

[Vivienne]

I don't understand the point of white noise and would love to have someone explain it to me. Whether the noise is internal in my brain or external coming through my ears, the sound is the same.

If I make it loud enough to mask the tinnitus, it's equally annoying? I've tried listening to one of those little gadgets that people (without tinnitus but who can't sleep without noise) use. I've cranked it up to the level of my inner noise which is ridiculously high and found it equally painful.

Please explains. I've had Tinnitus for over 25 years and it's getting louder. Thanks.

 

[Phendran]

Hell yeah. Heaven Yeah.

May it lead to great things.
Our hopes are with you, seekers of silence.

 

[Candy]

@Roundhouse I know what you mean it's almost like it's part of you, another sense and almost built in, you can't imagine it ever stopping.

It would be like taking a pill to stop you talking, it just feels unlikely that a medicine would help...in the beginning it was in the ear but now it's in the head and it is different to tinnitus in the ear...

Hopefully those clever chaps will shed some light and begin to answer the myriads of questions we all have...

 

[Odell]

The most common cause of tinnitus is through noise exposure - and there are several threads on companies working to restore hair cells and damaged synapses.

We still don't know if this will fix the most common cause of tinnitus but they are not far away from clinical trials?

I would welcome the opportunity to become part of such research. My tinnitus is becoming unbearable, it never stops.

 

[Starthrower]

Despite the shaky beginning with establishing Tinnitus Hub/Tinnitus Talk Support - your continued devotion and time are both incredible. It is not easy behind the "scene" working for the betterment of our problems with tinnitus.

Thank you. I am looking forward to reading more about this endeavor.

 

[japongus]

Overheard at the tinnitus conference in Madrid this year: ''we've come to realize tinnitus isn't an ear thing, it's a brain thing''.

No you haven't. Jastreboff ignored Pulec's work, made conference tours to fellow bureaucrats at 1000 bucks a pop, and took advantage of tort law and how otologists don't poke into your ear if you don't have hearing loss because they're all afraid of getting sued.

This group will spend the next 30 years trying to prove sound therapy rubbish works for tinnitus and hyperacusis. It's made by bureaucrats and it's directed at bureaucrats.

 

[Steve]

Overheard at the tinnitus conference in Madrid this year: ''we've come to realize tinnitus isn't an ear thing, it's a brain thing''.

No you haven't. Jastreboff ignored Pulec's work, made conference tours to fellow bureaucrats at 1000 bucks a pop, and took advantage of tort law and how otologists don't poke into your ear if you don't have hearing loss because they're all afraid of getting sued.

This group will spend the next 30 years trying to prove sound therapy rubbish works for tinnitus and hyperacusis. It's made by bureaucrats and it's directed at bureaucrats.

I'm not quite following you. I don't recall ever talking to any researcher who has just discovered tinnitus isn't in the ear. The big focus of the 2016 TRI conference was heterogeneity, looking at the various types and causes, nobody suggested that tinnitus was not in the brain. Maybe you heard someone who is just learning about tinnitus and was talking about their own clinic?

Sound therapy does work for some people. The focus is the brain, not the ear, trying to train the brain to stop listening to the sound. The problem is that it doesn't work for everyone, the same as with all tinnitus treatments.

 

[Alberte]

Thanks to the team of experts! It's full of hope.

 

[japongus]

I'm not quite following you. I don't recall ever talking to any researcher who has just discovered tinnitus isn't in the ear. The big focus of the 2016 TRI conference was heterogeneity, looking at the various types and causes, nobody suggested that tinnitus was not in the brain. Maybe you heard someone who is just learning about tinnitus and was talking about their own clinic?

Sound therapy does work for some people. The focus is the brain, not the ear, trying to train the brain to stop listening to the sound. The problem is that it doesn't work for everyone, the same as with all tinnitus treatments.

No, sound therapy doesn't work. It's nonsense. And you have no proof that it works. The only people that say it works are otological nihilists who say there isn't an injury at the ear, which they have to say because sound therapy is addressing the loony concept of brain plasticity and cognitive doublespeak. It's either/or. Subjecting patients to visits to the shrinks like sound therapists have always done in their sloppy af research to fakeify their success, will only delay research for another 3 or 4 decades.

A middle aged researcher in the audience was chatting about how tinnitus was in the brain, not in the ear, before the speeches started in the morning or lunchtime. And I think De Kleine went and said it in his intervention too, not sure.

 

[Steve]

No, sound therapy doesn't work. It's nonsense. And you have no proof that it works. The only people that say it works are otological nihilists who say there isn't an injury at the ear, which they have to say because sound therapy is addressing the loony concept of brain plasticity and cognitive doublespeak. It's either/or. Subjecting patients to visits to the shrinks like sound therapists have always done in their sloppy af research to fakeify their success, will only delay research for another 3 or 4 decades.

A middle aged researcher in the audience was chatting about how tinnitus was in the brain, not in the ear, before the speeches started in the morning or lunchtime. And I think De Kleine went and said it in his intervention too, not sure.

I was in Madrid and didn't hear anything like this.

I'm afraid I just don't have any idea what you're arguing about sound therapy. If you are trying to say that brain plasticity is false then I don't agree with you, the brain constantly evolves to external stimulus. I think you will struggle to find any neuroscientist that thinks otherwise.

 

[japongus]

I was in Madrid and didn't hear anything like this.

I'm afraid I just don't have any idea what you're arguing about sound therapy. If you are trying to say that brain plasticity is false then I don't agree with you, the brain constantly evolves to external stimulus. I think you will struggle to find any neuroscientist that thinks otherwise.

Well you're denying it was said in Madrid that hyperacusis and tinnitus are a brain thing not an ear thing, and then you're going onto say that very same thing you're denying. The guy in the audience who was chatting in the seats literally said they used to believe it was an ear thing and have gone on to believe it's a brain thing, maybe he was thinking Pulec's studies were wrong?

The consensus on sound therapy isn't that it can work, but that nobody knows if it can and most probably all the studies we have are deeply biased and faulty, so if I may I'll join you in not understanding what you're saying. Plus are you seriously saying that visits to psychologists in CBT - which is an essential component of TRT - help with things like middle ear ossicle and eardrum deformations? It seems like there's a whole lot of things that can go wrong with the ear most of which are highly debateable and unknown and yet the fathers of TRT have always used very simple tests to ''counsel patients about their inappropriate beliefs about middle ear pathology''.