What Is Your Impression of Tinnitus Research?

[TuxedoCat]

Hello everyone,

Having worked in midsize and large pharmaceutical companies for 27 years, I have spent most, if not all, of my career around research.

I've had tinnitus now for about 3 years and have recently been asked about my impressions of tinnitus research. Of course I have them, but I'd also like to know about your impressions as well.

I'm opening this thread to gather your opinion about the following as well as any other kernels of wisdom you might wish to share. So here goes.

What is your impression of tinnitus research?

• Is it taken seriously by government funding agencies? Do you detect differences in the level of seriousness among the US, UK and Europe? What about other parts of the world?
• Are there misperceptions about tinnitus and how it should be treated? Are there misperceptions about tinnitus patients?
• What about the interface between tinnitus researchers and tinnitus patients. Is it working? What should we keep doing and what should we stop doing? Do you think government agencies and researchers have a favorable view of the tinnitus community? Why or why not?
  
• Does the current mix of basic science, psychological, pharmacological and device research seem satisfactory? What should there be more of? Less of?
• What do you consider a treatment success for a tinnitus patient -- lessening of distress or a decrease in loudness or silencing the tinnitus sounds? Do you think governments, tinnitus organizations like the BTA and ATA have the same view as you on what constitutes a successful outcome?

Thanks in advance for participating in this conversation. -TuxedoCat

 

[Autumnly]

Thank you for asking all these great questions!

Is it taken seriously by government funding agencies?

No.

Are there misperceptions about tinnitus and how it should be treated? Are there misperceptions about tinnitus patients?

There's an overwhelming focus on tinnitus distress which is understandable since we can't reduce it yet but this has lead to misconceptions such as loudness not being important. This is in part due to the Cognitive Model of Tinnitus. There's not enough awareness for how debilitating it can be, how many people are suffering and that there aren't really any treatments. Many sites make it seem like we already have well-established and effective treatments and use phrases such as tinnitus can be "managed successfully". Severe patients are usually not believed. Typical misconceptions are: no real need for medical treatments, severe sufferers are just neurotic and negative, tinnitus can't be debilitating in itself, it's just the patient's attitude, and so on.

What about the interface between tinnitus researchers and tinnitus patients. Is it working?

I think tinnitus patients are being more involved in research but severe long-term sufferers seem to get left out. Oftentimes Tinnitus Hub gets invited after all plans are already set in stone and can't affect research much.

Do you think government agencies and researchers have a favorable view of the tinnitus community? Why or why not?

Researchers overall seem interested in working closely with tinnitus patients and understand that they're essential to their work. Many ENTs, audiologists and therapists, however, seem to look down on severe sufferers and don't believe them. I worry that government agencies don't understand how debilitating this condition can be and don't see the need for medical treatments.

Does the current mix of basic science, psychological, pharmacological and device research seem satisfactory? What should there be more of? less of?

No. We need more basic science and pharmacological and device research, though I don't think to focus on subtypes will help and I'm worried that it will hold back research.

What do you consider a treatment success for a tinnitus patient --lessening of distress or a decrease in loudness or silencing the tinnitus sounds?

Definitely decreased loudness or silencing tinnitus. We shouldn't view treatments that reduce tinnitus distress as real treatments and I don't know any other condition that has such a heavy focus on distress reduction. Imagine CBT for visual snow or visual snow habituation therapy, those are management strategies that can help certain individuals but aren't enough. The promotion of those management tools has created the misconception that we already have effective treatments.

Do you think governments, tinnitus organizations like the BTA and ATA have the same view as you on what constitutes a successful outcome?

No, especially the ATA has made it clear that they base their views on the Cognitive Model of Tinnitus and thus don't adequately represent severe sufferers. During this year's Tinnitus Week (the topic was research) their only contribution was a video by a woman saying it gets betters. The BTA says on their website that people can learn to live with tinnitus without being distressed by it and their article on stress explains that the type of tinnitus is basically irrelevant and it's your reaction that makes it debilitating. In a podcast episode, they argue what a cure for tinnitus would even mean. David Stockdale says there's an active debate whether a cure means silencing tinnitus or learning to cope well with it. The BTA seems to understand the need for medical treatments but they, like the ATA, spread the message that everyone can learn to cope well with tinnitus and undermine the need for treatments that can reduce tinnitus. The German Tinnitus League says on their website people can learn to ignore their tinnitus. Several people working for the GTA have stated that loudness isn't relevant, that the patient's attitude decides whether someone suffers or not or said that the emotional reaction is what causes the pain in people with pain-hyperacusis.

 

[TuxedoCat]

No. We need more basic science and pharmacological and device research, though I don't think focussing on subtypes will help and am worried that it will hold back research.

Hi Autumnly, I'm glad you brought up the issue of heterogeneity and subtypes. I meant to include that among the questions because I find my view on this is evolving. Understanding subtypes and heterogeneity is important, but the research community may be getting ahead of themselves. If and when there are real treatments that work to reduce or silence the tinnitus precept and they work for some but not all, then the question of subtyping and heterogeneity will become very important. Until then I fear that subtyping to the current set of European researchers has to do with identifying non responders to psychological therapies, a classification which may have only some or little to do with responses to pharmacologic treatments which can be measured with an objective measure of the tinnitus precept.

I'm currently giving the Five Big Personality paper a critical read. So far I'm not liking what I'm reading but I haven't really gotten to the punch line yet, I hope to get there later tonight. Don't know if you are familiar with the paper but the intro talks about work that shows that personality "traits such as high neuroticism and low extraversion are common hallmarks of tinnitus patients." So far I haven't come across any attempt by the authors to measure tinnitus loudness and intrusiveness, only distress. In addition I wonder... did it ever occur to them that maybe we are neurotic because we have tinnitus, no one knows what is causing it, no one can help us with a real treatment, AND no one knows the true natural history of the condition and if it can be expected to worsen with time. LOL that's enough to make anyone neurotic! -TC

 

[Autumnly]

Until then I fear that subtyping to the current set of European researchers has to do with identifying non responders to psychological therapies, a classification which may have only some or little to do with responses to pharmacologic treatments which can be measured with an objective measure of the tinnitus precept.

Completely agree. Tinnitus subtypes research also seems based on the idea that we already have effective treatments and just have to find out who they work for so that we can sort people into groups.

I'm currently giving the Five Big Personality paper a critical read. So far I'm not liking what I'm reading but I haven't really gotten to the punch line yet, I hope to get there later tonight.

I remember reaching out to the authors saying that I'm worried this paper might harm severe sufferers. If I remember correctly, one of the authors replied saying that severe tinnitus could be a cause for higher neuroticism levels but they didn't mention that in the paper (but please let me know if I'm wrong). I'm worried the paper will do more harm than good and perpetuate the idea that tinnitus sufferers, especially long-term sufferers, are just neurotic and therefore can't cope. The BTA will discuss the paper during their next journal club session and we can only guess how they are going to interpret it, they already discussed McKenna's recent mindfulness for tinnitus study.

 

[Greg Sacramento]

Some research groups are doing their best and some have treatment for physical problems that also can cause tinnitus. One problem is that doctors are uneducated and medical treatment takes time, effect and expense.

Do you think government agencies and researchers have a favorable view of the tinnitus community? Why or why not?

Many don't because of fee paid management consultant companies controlling the tinnitus space.

the idea that tinnitus sufferers, especially long-term sufferers, are just neurotic

It's not believed by most that long-term sufferers are neurotic, but some believe that many who have tinnitus don't have severe tinnitus. It's understandable that those with long term tinnitus might develop hypertension where that can cause physical problems with relation to tinnitus.

What places many with tinnitus into a box is that any exam or treatment could make tinnitus worse.

 

[gerhei]

Hey, here are my impressions:

Is it taken seriously by government funding agencies? Do you detect differences in the level of seriousness among the US, UK and Europe? What about other parts of the world?

Definitely not. I have no overview over the guideline developments in other parts of the world, although I have the impression that recently, some more things are going on in Europe. But maybe I am mistaken.

Are there misperceptions about tinnitus and how it should be treated? Are there misperceptions about tinnitus patients?

There are huge misperceptions and I am not getting tired to mention the elephant in the room: Tinnitus subtypes. It is really amazing to see the ignorance in research which always seems to suggest that there is one solution for all tinnitus sufferers. This is a waste of money and patients life time. As I have written elsewhere, there are already various treatments for specific subtypes, but it seems that noone is willing or able to differentiate the treatments according to the underlying cause of the tinnitus. Tinnitus caused by neck muscles needs a different treatment than tinnitus caused by hearing loss or something else. To my last knowledge, there are something like 800 different causes of tinnitus. It is childish to belive that there is one treatment for tinnitus as if it would be something trivial such as a broken finger.

Regarding patients: I think it is underestimated how debilitating tinnitus can be.

What about the interface between tinnitus researchers and tinnitus patients. Is it working? What should we keep doing and what should we stop doing? Do you think government agencies and researchers have a favorable view of the tinnitus community? Why or why not?

I've got no experience regarding this question. What I know is that - at least in Germany - each specialized doctor is "cooking his own soup" as we use to say here. I have not the impression that patients have easy access to interdisciplinary research centers or institutes. Maybe the internet contributes to improve the communication between patients and researchers. This could definitely be improved because I cannot imagine any tinnitus sufferer not being ready to go for every study.

Does the current mix of basic science, psychological, pharmacological and device research seem satisfactory? What should there be more of? Less of?

In principle, I would say that the basic direction of the mixing is improving. I am not against talking about psychology for tinnitus sufferers because I believe that it can really help to prevent people from falling "off the cliff" with the diagnosis and not proper treatment in sight for their specific tinnitus. However, to declare the whole issue to be purely psychological, is an oversimplification and I have the impression that there are some actors in Germany that are pushing the idea that suffering from tinnitus is nothing more than a psychological disorder that can be corrected with 15 sessions of counseling or so. This is idiotic and counter productive. It would be better for the psychology of the patients to recognize their suffering and to search together for solutions.

The question of devices and pharmacology: As I said before, it all depends on your tinnitus subtype. For some cases of tinnitus, medication may be the right path. For someone suffering from tinnitus caused by the neck, this is useless.

However, I could imagine that mixing in more methods could lead potentially to more treatments that than could be applied for different patient groups. This is something positive, although I still don't see that something like this is done deliberately.

What do you consider a treatment success for a tinnitus patient -- lessening of distress or a decrease in loudness or silencing the tinnitus sounds? Do you think governments, tinnitus organizations like the BTA and ATA have the same view as you on what constitutes a successful outcome?

I have two different kinds of tinnitus. One tinnitus doesn't bother me at all. I'd be happy to live with it until the end of my life. Another kind of tinnitus is very high in its tone (not in loudness) and extremely annoying (thank God not always) and I would be ready to do anything in order to get rid of it. If I suppose that there are tinnitus sounds that someone can live with in terms of loudness and frequency, I think that success can be defined in a spectrum of "doesn't bother me" until "disappeared".

As for the last question I cannot say anything.

 

[Frédéric]

This is not Research News per se, it is an up to date summary of the situation about tinnitus research:

Tinnitus, which is the perception of sound in the absence of a corresponding external acoustic stimulus, including change of hearing and neural plasticity, has become an increasingly important ailment affecting the daily life of a considerable proportion of the population and causing significant burdens for both the affected individuals and society as a whole.

Here, we briefly review the epidemiology and classification of tinnitus, and the currently available treatments are discussed in terms of the available evidence for their mechanisms and efficacy.

The conclusion drawn from the available evidence is that there is no specific medication for tinnitus treatment at present, and tinnitus management might provide better solutions. Therapeutic interventions for tinnitus should be based on a comprehensive understanding of the etiology and features of individual cases of tinnitus, and more high quality and large-scale research studies are urgently needed to develop more efficacious medications.

Full article: https://www.hindawi.com/journals/np/2020/7438461/​

 

[Poseidon65]

Hello everyone,

• What do you consider a treatment success for a tinnitus patient -- lessening of distress or a decrease in loudness or silencing the tinnitus sounds?

I consider a decrease in loudness to be a treatment success. On the other hand, lessening of distress on its own is *not* a success. To draw an analogy: if a patient has chronic pain, then talk therapy might make that patient feel a little better. However, it would be misleading to say that we've "treated" the patient's pain. The same goes for tinnitus.

Using this definition of success, I would say tinnitus research has clearly not been unsuccessful. There is no treatment which reduces loudness. In addition, the current state of the art therapies (CBT and masking) have both been around for many decades. The lack of progress reflects very poorly on the tinnitus research done over this period.

My feeling is that whatever tinnitus researchers have been doing, it "hasn't worked," and that more of the same is essentially a bridge to nowhere. In order to find success, I think we'll need approaches which are different from what's been done previously.

 

[david c]

I consider a decrease in loudness to be a treatment success. On the other hand, lessening of distress on its own is *not* a success. To draw an analogy: if a patient has chronic pain, then talk therapy might make that patient feel a little better. However, it would be misleading to say that we've "treated" the patient's pain. The same goes for tinnitus.

Using this definition of success, I would say tinnitus research has clearly not been unsuccessful. There is no treatment which reduces loudness. In addition, the current state of the art therapies (CBT and masking) have both been around for many decades. The lack of progress reflects very poorly on the tinnitus research done over this period.

My feeling is that whatever tinnitus researchers have been doing, it "hasn't worked," and that more of the same is essentially a bridge to nowhere. In order to find success, I think we'll need approaches which are different from what's been done previously.

I agree with a lot of what you say. The key thing to realise is that the focus on "tinnitus distress" instead of loudness or curative research hasn't come about by accident. It's happened because both the CBT and "tinnitus masking" industries have very influential lobbyists at the heart of the major tinnitus charities such as the ATA and BTA. They've helped ensure that scarce research money has been spent on duplicating research in the CBT and masking areas - the areas they profit from - rather than on more innovative biomedical research.

What can we do about that? Our options are limited but certainly high on the list would be not to donate to those charities which have been responsible for past failures.

 

[Poseidon65]

The key thing to realise is that the focus on "tinnitus distress" instead of loudness or curative research hasn't come about by accident. It's happened because both the CBT and "tinnitus masking" industries have very influential lobbyists at the heart of the major tinnitus charities such as the ATA and BTA. They've helped ensure that scarce research money has been spent on duplicating research in the CBT and masking areas - the areas they profit from - rather than on more innovative biomedical research.

After reading your comment, I looked at the list of past studies which have been funded by the ATA:

https://www.ata.org/research-toward-cure/research-program/past-ata-funded-research

Truthfully there do not seem to be a preponderance of studies about CBT or masking. That said, they also indicate for each study, which part of "a roadmap for a cure" the study is targeting:

https://www.ata.org/research-toward-cure/research-program/roadmap-cure

And I can see that since 2007, only one ATA-funded study has focused on category E, which is "Develop and Optimize Therapies for Tinnitus." To me that doesn't seem very good at all.

Also notable is that their research funding budget is very small, only $100K/year. By contrast the American Cancer Society funded $145M of research in 2019.

If one wanted to find (and donate to) higher impact research than what the ATA is funding, how would one go about this?

 

[ajc]

Also notable is that their research funding budget is very small, only $100K/year. By contrast the American Cancer Society funded $145M of research in 2019.

ATA just received a $2.7M legacy gift, hopefully they use it well.

American Tinnitus Association Receives $2.7 Million Legacy Gift

 

[david c]

After reading your comment, I looked at the list of past studies which have been funded by the ATA:

https://www.ata.org/research-toward-cure/research-program/past-ata-funded-research

Truthfully there do not seem to be a preponderance of studies about CBT or masking. That said, they also indicate for each study, which part of "a roadmap for a cure" the study is targeting:

https://www.ata.org/research-toward-cure/research-program/roadmap-cure

And I can see that since 2007, only one ATA-funded study has focused on category E, which is "Develop and Optimize Therapies for Tinnitus." To me that doesn't seem very good at all.

Also notable is that their research funding budget is very small, only $100K/year. By contrast the American Cancer Society funded $145M of research in 2019.

If one wanted to find (and donate to) higher impact research than what the ATA is funding, how would one go about this?

Being British I am certainly more aware of what tinnitus research the BTA has been funding or failing to fund over the past decade. These include many CBT or MCBT (mindfulness CBT) studies - most duplicating previous research - and several studies on aspects of white noise maskers and other audiology products. In contrast the BTA has failed to fund any biomedical tinnitus research.

The ATA's research program certainly hasn't impressed most American members of Tinnitus Talk. It's true as you say that their overall budget is certainly smaller than most cancer charities. However, they do seem to have been recipients of some quite significant gifts over the years, as @ajc has pointed out, which does make one wonder where all the money has gone.

 

[Cernuto]

My impression is that we are in the dark ages. The medical industry is slow and resistant to change, therefore holding us back. We should be much further along in awareness and understanding. I imagine once we are at a point where we can figure out how to cure things like tinnitus we will see tremendous developments in other areas of medicine as well, relative to where we are at now.

 

[BrStan@]

The truth is that tinnitus sufferers are waiting for someone to magically come and solve their problem.

Tinnitus patients should be more proactive. They should advocate and donate. But you won't see them do that. They come here to complain, cry, and if they get better disappear and don't want to hear about tinnitus anymore.

Taking this into account there is no way we have successful treatment even after 1000 years.

Every tinnitus sufferer should know that it's all in their hands. If they don't do anything, no one will.

 

[Poseidon65]

@BrStan@, do you know of any other diseases which were cured due to grassroots action from patients themselves? I must admit I don't know of any.

 

[Snake]

The truth is that tinnitus sufferers are waiting for someone to magically come and solve their problem.

Tinnitus patients should be more proactive. They should advocate and donate. But you won't see them do that. They come here to complain, cry, and if they get better disappear and don't want to hear about tinnitus anymore.

Taking this into account there is no way we have successful treatment even after 1000 years.

Every tinnitus sufferer should know that it's all in their hands. If they don't do anything, no one will.

Remember that severe sufferers often can barely leave their bed. There's not so much strength to be proactive.

 

[BrStan@]

Remember that severe sufferers often can barely leave their bed. There's not so much strength to be proactive.

Yes, I know as I am one of them. But how about not that severe cases?

 

[Snake]

Yes, I know as I am one of them. But how about not that severe cases?

Their tinnitus is so low that they can somehow manage and live their life.

That's a tinnitus vicious cycle.

 

[BrStan@]

do you know of any other diseases which were cured due to grassroots action from patients themselves? I must admit I don't know of any.

Yes, there is, giving you an example of HIV/AIDS. It was all awareness and advocating in the beginning mostly by the HIV positives. If these people had not been that united at the start of the epidemic, I don't think we would today see AIDS as a chronic disease instead of a death sentence.

But tinnitus, who cares. It does get better after all. It is just me and a couple of people here on this forum who are getting worse instead of better.

Here is the bitter truth:

Someone gets tinnitus. They google it. They find Tinnitus Talk. They start crying and complaining. Their tinnitus gets better after some time. They leave the forum and they don't care anymore. They welcome life back again.

 

[BrStan@]

Their tinnitus is so low that they can somehow manage and live their life.

That's a tinnitus vicious cycle.

Shouldn't these people advocate and fight for a cure then? They don't spend all day in bed. They can function. Why don't they do anything? Can you imagine if each person with tinnitus said "enough is enough, I need to do something about it, I need to change something. I don't want to learn to live with it." I can bet you if that was the case, our situation today would be very different.

By the way, let me ask you something direct. Did you notice here on Tinnitus Talk there is a section "Become an Advocate"? Did you wonder what is it for?