"That Buzzing That Never Goes Away" — Article in The Times

[Bam]

Steve the way I see this can be put in two steps:

1. Continue tiptoeing and balancing between harm and benefits and reap the "results" that we have had to this day! (read: an absolute zilch for tinnitus sufferers but not so bad for all the others involved).

2. Change the rotten and outdated strategy and tell the world what it can be like! No one is immune to severe tinnitus, neither those who have never had it nor those with mild form!

Do you think that a newly diagnosed MS or Parkinson's patient doesn't do research or isn't aware of how bad things can get?

How many cancer patients aren't familiar what's the end result if diagnosed with an aggressive form?

Why aren't tinnitus patients informed how bad things can get? Why do we continue sweeping the harsh reality under the carpet?!

And if you tell me that severe cases represent only 1% then this unfortunate percentage needs a more serious representative than the BTA and ATA.

BTA and ATA should clearly state they are not interested in the bad and ugly but only mild cases that can benefit from treatments endorsed on their websites and continue with what they have been doing for over 4 decades now!

So it all comes down to what those representing us truly see as an important target!
It's either to help us or to continue supporting "milking" businesses involved!

It's that simple! It's black and white with no need for 50 shades of grey in between!

God do I wish I had more power

Valeri my heart goes out to you. I know you suffer hugely but to carry this enormous weight for so long without relief, shows an incredible survival instinct.

I can only glimpse your frustration at nothing changing in a decade of intense suffering.

 

[Ed209]

I'm not sure if we'll ever understand why some suffer more than others. The brain is so complex that answering this question in simple terms is not really possible. I suppose an analogy I could use, is why are some people claustrophobic when in tight spaces whilst others aren't? The stimuli is the same but the individual reactions are anything but. I could use other examples like how we all perceive heights differently, or even real sounds differently. There are some people who literally cannot bear to hear people chew, and it can induce a physiological reaction in them.

Our individual psychological responses to physical stimuli are so varied, that it's not possible to claim that person A will react to stimulus Y the same way as person B will. We are uniquely wired. Our reaction cannot be changed, and/or be expected to alter, any more than we can expect a depressed person to become happy because we tell them to cheer up. This is why CBT and other strategies can help some (for various problems), but not others. It's about neuroplasticity. However, our brain is possibly the most complex thing in the known universe, so our understanding of these phenomena's is obviously limited.

With all that said there are two interesting studies which may interest some of you. I'll paste a couple of excerpts below, but I recommend you read them in full if you are interested in this kind of stuff:

This is the first report that finds a significant correlation between psychophysically determined tinnitus loudness and brain activity. In line with previous reports the tinnitus percept loudness correlates with gamma and delta oscillatory activity, but only when tinnitus loudness is estimated with a novel type of sound derived by tinnitus reconstruction. We report an easy to apply synthesization paradigm to generate this sound, which comprehensively reflects the spectral complexity of the tinnitus percept and for which patients report extraordinary similarity to their tinnitus. Because this novel tinnitus reconstruction achieves better results than other types of sounds, it is suggested to use it for determining tinnitus loudness in future studies.

The results of the present study also support the clinically motivated distinction between tinnitus loudness and tinnitus-related distress which were shown to associate with distinct patterns of gamma and delta oscillatory brain activity. Additionally, tinnitus-related distress correlates with theta oscillatory activity which is known to be associated with depressivity and anxiety. The increase of delta oscillatory power together with increasing minimum masking level should be investigated in more detail in the future because of its high clinical importance as a tool to control the tinnitus percept.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3542397/​

Tinnitus research sometimes ignores that there may be large intersubject variability with regard to the clinical picture presented by this group of patients. Approximately a dozen or more major characteristics can be listed that should be taken into account when patients' conditions are diagnosed and treated. Various aspects of tinnitus severity seem to be important. Many patients consider the intensity of their tinnitus signal as responsible for the extent of distress and impairment. Although it has been shown that personal distress due to tinnitus is to some degree dependent on primarily psychological factors such as cognitive appraisal or differences in coping behavior,28 the role of physical, audiologic, and medical properties of tinnitus should not be underestimated. There has been little research until now addressing these issues. We need studies that investigate the determinants of tinnitus loudness and annoyance to understand more deeply how patients react to their tinnitus and which factors contribute to the long-term maintenance of distress.

The present investigation was supported by the DTL, one of the largest charities worldwide providing advice, support, and information for people with tinnitus. Its interest was to obtain more detailed information about the tinnitus characteristics of its members, especially concerning the different forms and courses of the tinnitus, underlying etiologies, and types and levels of tinnitus-related psychological distress. A screening questionnaire was developed especially for the purpose of this study, adopting items from existing instruments that have proved reliable and valid. Almost 5000 questionnaires with complete or nearly complete data were returned. One advantage of this large sample size is that even rare attributes and subgroups can be analyzed with sufficient numbers of cases. It can also be assumed that statistical measures such as proportions, means, and correlations are considerably more stable than in typical clinical samples with case numbers usually between 50 and 200.

Despite differences in the sampling procedures, the base rates of many tinnitus characteristics found in our study were similar to those reported by other researchers. The prevailing proportion of men and the more frequent occurrence of tinnitus in the left ear are common findings.4,33,34 The high rate of subjective hearing loss in our sample (80%) is comparable to results reported by Andersson et al33 (almost 90%) and Stouffer and Tyler4 (only 18% with hearing levels ≤25 dB). The proportion of subjects who experienced an increase in tinnitus loudness since onset was 35% in our study and 28% in a study by Stouffer et al.35 As in the present data, these authors observed no clear linear increase in tinnitus annoyance as a function of years since onset. An increase in loudness, however, was found by both Stouffer et al35 and Scott et al.32 In the latter study, 24% of the subjects had experienced strong tinnitus when their tinnitus had begun compared with 40% at the time of investigation. Subjects with binaural tinnitus had higher degrees of both loudness and annoyance in our study. Erlandsson et al36 reported a related finding, with binaural patients having significantly more sleeping disturbances than those with tinnitus in only 1 ear.

One major finding of the present study is that tinnitus loudness and annoyance are associated but not identical. We consider both variables to constitute tinnitus severity. Almost 10% of our subjects rated their tinnitus loudness as weak in the Klockhoff and Lindblom system, whereas approximately one third were assigned to grade III, with tinnitus perceived louder than all external noise. Tinnitus annoyance was generally somewhat less severe than loudness. Approximately one third of the subjects were categorized as mildly distressed, and only 16% belonged to the subgroup with the highest distress level. The correlation between loudness and annoyance was 0.45 and thus moderate. The obvious overlap between both variables corresponds to our finding that several tinnitus parameters had comparable influence on both loudness and annoyance. In particular, higher levels of severity were found for men, older adults, binaural and centrally perceived tinnitus, increase in tinnitus intensity since onset, sensitivity to loud external noise, continuous tinnitus (as opposed to intermittent tinnitus), and the coexistence of hearing loss, vertigo, and hyperacusis. These attributes can therefore be considered risk factors for the development of loud and annoying tinnitus.

Despite these similarities, other variables had inconsistent influence on loudness and annoyance. The most striking result was found for time since onset of the tinnitus. Tinnitus duration of less than 12 months was associated with higher annoyance but lower loudness, whereas the reverse was the case for duration of more than 5 years. This means that annoyance tends to be more crucial during the first year of the tinnitus and is less predictable in the long term. From a theoretical perspective, it is assumed that habituation and acceptance tend to increase over time, which is likely to lead to reduced annoyance.37

Distinguishable effects on loudness and annoyance were also found for permanent (interval-free) tinnitus and coexisting hyperacusis. Both variables, whenever present, were associated with increased severity. The effect of continuous tinnitus was greater on loudness (OR, 7.16) than on annoyance (OR, 4.56), whereas hyperacusis influenced annoyance (OR, 21.91) more than loudness (OR, 9.47). The extraordinary high OR for the relationship between hyperacusis and annoyance emphasizes the high relevance of hyperacusis to tinnitus perception. An increasing number of studies have described more distress, a higher loss of quality of life, and more complicated treatments in patients with tinnitus who have coexisting hyperacusis.38 Recent work by Sindhusake et al39 has additionally suggested that hearing loss and dizziness are further risk factors for severe tinnitus. Since tinnitus, hearing loss, and hyperacusis are considered as a triad with common pathophysiologic mechanisms,40 the consequences of these conditions on tinnitus perception are likely to be interrelated.

This study has also provided evidence that some of the various etiologies of tinnitus seem to be related to tinnitus severity. We found substantially higher rates of loudness and annoyance in subjects whose tinnitus was due to conductive hearing loss, severe head injury, or neurologic disease. Our results, however, are based on self-reported data and not on direct medical examination. On the other hand, many subjects are well informed about the diagnoses made by their physicians, and the DTL provides broad information for their members to enhance understanding of medical procedures and diagnostic findings. There has been little research until now about how specific etiologies influence the ways patients interpret and react to their tinnitus. Stouffer and Tyler4 observed increased levels of loudness and annoyance in patients with Ménière disease. In a previous study, we identified sudden hearing loss and associated craniomandibular disorder to be of some relevance for tinnitus distress.5 However, the etiologic pathways related to tinnitus severity are less well studied than for hearing loss, and more systematic research is needed in this field.

This study has some limitations that should be mentioned. First, our sample was not representative. Participation was voluntary, and it can be assumed that the questionnaires were returned primarily by cooperative individuals interested in some form of active discussion about their tinnitus. Exact judgement of possible bias due to these selections is difficult. To our surprise, the sex and age distributions were highly similar to those of the population of all DTL members, in which the female-male ratio is 42% to 58% and the mean age is 56 years. We know, however, that our sample had a larger male proportion and was somewhat older compared with the average German population, in which approximately 48% are male and the mean population age is approximately 47 years. Several years ago, Pilgramm et al2 conducted a tinnitus survey in a representative German sample and published data derived from 3049 respondents. A total of 37% of their sample had grade I on the Klockhoff and Lindblom system, 44% had grade II, and 17% had grade III. On a scale similar to the Mini-TQ, 24% were classified as quartile IV and 20% as quartile III. It can therefore be concluded that the sample presented herein is characterized by a higher proportion of subjects with loud and annoying tinnitus. However, this does not necessarily imply that results will be biased when the relationship among different variables is analyzed.

A second limitation is that the loudness data in our study are based on self-report and not psychoacoustic measurement. Although it is equivocal which method yields data of higher validity, it would be desirable to investigate whether the loudness-related findings presented herein could be replicated using psychoacoustic methods. Some evidence in the literature indicates that the minimal masking level may be linked to psychological distress.32,33 Independent of such associations, the question of whether self-reported loudness or audiometrically measured match intensity is more valid seems to be misleading when both approaches are considered as basically different.

The strengths of the present study are its large sample size, making it possible to analyze even rare conditions, and the use of items with established psychometric validity. In addition, all levels of loudness and annoyance are represented in our sample, with a sufficiently large number of subjects in each category. This is usually not the case in samples recruited in audiologic clinics, where loudness grades II or III are overrepresented.33 Grade I of the Klockhoff and Lindblom system is relatively frequent in the population, with rates of approximately one third among all individuals who reported tinnitus.2

In conclusion, the results of our study highlight the importance of tinnitus loudness and annoyance as major components of tinnitus severity. As a matter of course, both components are to be considered thoroughly in the clinical examination of patients with tinnitus. Adequate treatment decisions cannot be made without taking tinnitus severity into account. Moreover, loudness and annoyance represent outcome variables that should be considered central for treatment studies.

https://jamanetwork.com/journals/jamaotolaryngology/fullarticle/484595​

 

[Markku]

Minding our very modest production capabilities, I did like this little awareness piece we did:



Then there's this one where Tinnitus Talk members sent us footage to include in a video:



And Emma, a talented tinnitus sufferer, drew these for us, she's done other tinnitus related drawings as well:




Personally I do love @Bam's above idea for a video, as do I @valeri's idea - @attheedgeofscience is right about the Sounds of Tinnitus having done well.

I know @Makrohn has been working on a tinnitus documentary for some time now, but as often happens, other life matters have made the progress slower than initially hoped.

I'm thinking of contacting our local film school, where they do various kinds of student projects, short films and such, as part of their curriculum and many of those students' hobbies also revolve around film.

It won't hurt to try and pitch an idea. That way we could possibly get a high quality short film done, with actors and such. I've seen some of those short films they've done and they can be really good.

Similarly, if anyone here has contacts with folk in the film/media industry, or if anyone happens to be an aspiring film maker themselves, feel most welcome to send me a private message.

 

[Ed209]

How about this Jazzer.....

Fade in: Guy leaving a rock concert with his mates laughing.

Guy: Great night!......My ears are ringing!

Cut to his house. Black and white. He's pacing up and down, he looks exhausted, his eyes sunken and his face ashen.

He stares out of the window tears in his eyes. His crying wife is ushering the kids in to the car with their suitcases. She looks heartbroken as she looks back at him.

Angle on: Him from behind at the window, shoulders slumped. He's wearing a t-shirt with 'Tinnitus' written like a band name on the back with 'ringing ears' tour dates printed below.

27/o7 Panic bowl
03/08 Insomnia theatre
03/09 Depression and anxiety arena
5/10 Unemployment dome
8/11 Nervous breakdown stadium
06/10 Relationship loss field
28/11 Alcohol addiction colosseum
08/12 Homelessness sports field
15/02 Suicide ballroom

He turns and stares at the camera with dead eyes. We hear a piercing tinnitus sound....eeeeeeeeeeee

Super: Make sure one night out doesn't turn in to a death sentence.

BOOM!......The BTA and NHS will f***ing hate it but hey ho.

Bam, with your descriptions, I can play this post in my head like a movie. If I saw this on the TV I'd be all for it. Let's just say I'm all for any action by the community, that can help. If you all want to see change then we need to see more action from everybody who wants that change.

I said this before but I'll say it again:

A pebble is tiny and insignificant, but drop a load of them into a torrent of water and they have the power to stop it. Suddenly, they become significant.

We are the pebbles.

 

[JohnAdams]

I think we are all naive as crap to think anyone is going to really care. Our only hope right now is big pharma and a big profit margin. People are just mostly stupid and uncaring. It's a fact.

 

[TuxedoCat]

I see now there is a post asking for contributions to support Josef Rauschecker's research. I hope we can get more information. He comes across as someone interested in researching tinnitus with the aim of finding an effective treatment. -TC

 

[Ed209]

I think we are all naive as crap to think anyone is going to really care. Our only hope right now is big pharma and a big profit margin. People are just mostly stupid and uncaring. It's a fact.

Unfortunately John, the world is driven by capatilism and that's how we generate productivity. Without it, most things would stagnate.

When it comes to medical products you have to realise that you are paying for the research that has gone into them as well, not just the parts and labour. Without a healthy profit margin, companies can't thrive and move forwards with new ideas. And remember, nobody works for free. Industries are driven by money and that's just a fact of life. Conversely, communism has never worked in any country that I know of. Humans need incentives to get up and do things.

Just out of interest, have you ever read the classroom analogy? There are many examples, here's one:

An economics professor at a local college made a statement that he had never failed a single student before, but had recently failed an entire class. That class had insisted that communism/socialism worked, and that no one would be poor and no one would be rich; a great equalizer.

The professor then said, "OK, we will have an experiment in this class". All grades will be averaged and everyone will receive the same grade so no one will fail and no one will receive an A (substituting grades for dollars – something closer to home and more readily understood by all).

After the first test, the grades were averaged and everyone got a B. The students who studied hard were upset and the students who studied little were happy.

As the second test rolled around, the students who studied little had studied even less and the ones who studied hard decided they wanted a free ride too so they studied little.

The second test average was a D! No one was happy.

When the third test rolled around, the average was an F.

As the tests proceeded, the scores never increased as bickering, blame and name-calling all resulted in hard feelings and no one would study for the benefit of anyone else.

To their great surprise, all failed and the professor told them that socialism would also ultimately fail because when the reward is great, the effort to succeed is great, but when government takes all the reward away, no one will try or want to succeed.

It could not be any simpler than that.​

 

[Jazzer]

Then there's this one where Tinnitus Talk members sent us footage to include in a video:

The Unrelenting Noise is right on target.
I wish it were longer - more people.

@Bam's idea is such a strong narrative.
I so hope somebody can help him make it a reality.
It is the very message which we need to get across.

 

[Steve]

I think we are all naive as crap to think anyone is going to really care. Our only hope right now is big pharma and a big profit margin. People are just mostly stupid and uncaring. It's a fact.

In slightly less offensive language I agree with you.

Put the video that @Bam posted up (a good idea, in my opinion without the "death sentence" part) and it may shock. But follow on a video of a puppy or a cancer charity or a donkey or something with children and the reality is we are long forgotten about.

When the famous people with tinnitus don't want to talk about it you know you're in trouble. If it was something that people understood or empathised with I think they would be more open and activist.

Tinnitus just does not feature for people who don't have it, and I don't see that changing unfortunately. Most of what we do, be it shocking or nice, is preaching to the converted. If we could find a way through to the wider world I would be very happy.

That's why I often say that what we really need to do is galvanise the community to make a difference.

Sadly it is also an apathetic community, which we have plenty of evidence of...

 

[Steve]

Do you think that a newly diagnosed MS or Parkinson's patient doesn't do research or isn't aware of how bad things can get?

How many cancer patients aren't familiar what's the end result if diagnosed with an aggressive form?

Why aren't tinnitus patients informed how bad things can get? Why do we continue sweeping the harsh reality under the carpet?!

I think that the distinction is that with tinnitus it is completely subjective, I tell you that my tinnitus is severe but it's just my word to tell you that. In the conditions you mention you can see and measure the deterioration. If we had an objective measure then maybe this could change.

2. Change the rotten and outdated strategy and tell the world what it can be like! No one is immune to severe tinnitus, neither those who have never had it nor those with mild form!

I do stand by what I've said before. Put out that information and it is always going to be indiscriminate.

Research presented at the recent conference showed a rate of around 10% of children have tinnitus. Not far from the adult estimations.

How do you control that message when it could enter the ears of a child? It's difficult to try and ask them about tinnitus as it is because you don't want to suggest to them that it's an issue because we'll know how kids can worry and obsess.

I think we can find a way of presenting things that doesn't ignore the 1-2% but if we go for pure shock we could cause a lot of harm, particularly to people in a vulnerable state and to children. I don't want to sweep it under the carpet but I also want to see the message balanced and with forethought.

 

[JohnAdams]

Unfortunately John, the world is driven by capatilism and that's how we generate productivity. Without it, most things would stagnate.

When it comes to medical products you have to realise that you are paying for the research that has gone into them as well, not just the parts and labour. Without a healthy profit margin, companies can't thrive and move forwards with new ideas. And remember, nobody works for free. Industries are driven by money and that's just a fact of life. Conversely, communism has never worked in any country that I know of. Humans need incentives to get up and do things.

Just out of interest, have you ever read the classroom analogy? There are many examples, here's one:

An economics professor at a local college made a statement that he had never failed a single student before, but had recently failed an entire class. That class had insisted that communism/socialism worked, and that no one would be poor and no one would be rich; a great equalizer.

The professor then said, "OK, we will have an experiment in this class". All grades will be averaged and everyone will receive the same grade so no one will fail and no one will receive an A (substituting grades for dollars – something closer to home and more readily understood by all).

After the first test, the grades were averaged and everyone got a B. The students who studied hard were upset and the students who studied little were happy.

As the second test rolled around, the students who studied little had studied even less and the ones who studied hard decided they wanted a free ride too so they studied little.

The second test average was a D! No one was happy.

When the third test rolled around, the average was an F.

As the tests proceeded, the scores never increased as bickering, blame and name-calling all resulted in hard feelings and no one would study for the benefit of anyone else.

To their great surprise, all failed and the professor told them that socialism would also ultimately fail because when the reward is great, the effort to succeed is great, but when government takes all the reward away, no one will try or want to succeed.

It could not be any simpler than that.​

Well they sure as heck fund the development of military technology socilialistically by direct government funding. I guess killing people and sending soldiers to get tinnitus is far more important than healing people. I bet they could cure MOST diseases with a DoD level budget in like 3 years.

 

[Ed209]

Well they sure as heck fund the development of military technology socilialistically by direct government funding. I guess killing people and sending soldiers to get tinnitus is far more important than healing people. I bet they could cure MOST diseases with a DoD level budget in like 3 years.

That's a different issue, and I agree with you. I believe that certain ideas within socialism are good, and help many people, such as the NHS in the UK.

The only thing you can do is lobby your government about it. However, they do not decide how much tinnitus treatments cost, but I do agree that prices sometimes go too far on some treatments.

 

[JohnAdams]

That's a different issue, and I agree with you. I believe that certain ideas within socialism are good, and help many people, such as the NHS in the UK.

The only thing you can do is lobby your government about it. However, they do not decide how much tinnitus treatments cost, but I do agree that prices sometimes go too far on some treatments.

I'm talking about funding development of new technology, which they actually do with the NIH, but just imagine if Frequency Therapeutics had a billion dollars.

 

[Jazzer]

I'm talking about funding development of new technology, which they actually do with the NIH, but just imagine if Frequency Therapeutics had a billion dollars.

On a personal level it feels important to tell people just how bad this thing can get.
But realistically what will that achieve?

People may be more understanding and considerate in dealing with us.
People may take more care themselves, and around us, with their noise.

People may desist from telling us inanely to 'just choose happiness and enjoy the sunshine.'

But as John Adams says, we need organisations to be researching this hateful thing for treatments and cures, with severe sufferers in mind.

 

[Bam]

I think that the distinction is that with tinnitus it is completely subjective, I tell you that my tinnitus is severe but it's just my word to tell you that. In the conditions you mention you can see and measure the deterioration. If we had an objective measure then maybe this could change.


I do stand by what I've said before. Put out that information and it is always going to be indiscriminate.

Research presented at the recent conference showed a rate of around 10% of children have tinnitus. Not far from the adult estimations.

How do you control that message when it could enter the ears of a child? It's difficult to try and ask them about tinnitus as it is because you don't want to suggest to them that it's an issue because we'll know how kids can worry and obsess.

I think we can find a way of presenting things that doesn't ignore the 1-2% but if we go for pure shock we could cause a lot of harm, particularly to people in a vulnerable state and to children. I don't want to sweep it under the carpet but I also want to see the message balanced and with forethought.

Steve is spot on.

The reason we're left floundering is there's no real measurement of this bullshit.

If people could be in some of our heads for a few days I'm pretty sure we could convince a kind friend to accidentally on purpose run us over at high speed.

But without them hearing it we're back to, 'Hey mate how's it going. Come for a drink you'll feel better.' Agghhhh!

 

[Jack Straw]

Steve is spot on.

The reason we're left floundering is there's no real measurement of this bullshit.

If people could be in some of our heads for a few days I'm pretty sure we could convince a kind friend to accidentally on purpose run us over at high speed.

But without them hearing it we're back to, 'Hey mate how's it going. Come for a drink you'll feel better.' Agghhhh!

I hope you're feeling better Bam. I went on my first bike trip yesterday and it was very fun and refreshing. It was nice to be outside in nature!

 

[david c]

I see now there is a post asking for contributions to support Josef Rauschecker's research. I hope we can get more information. He comes across as someone interested in researching tinnitus with the aim of finding an effective treatment. -TC

Yes this research looks really encouraging.

It's dismal on the other hand to see more of the free publicity for MuteButton on here - yet another expensive audiology device which had been shown to be ineffective in the past - being given a platform at the Talking Tinnitus conference to sell to desperate tinnitus sufferers.

 

[Bam]

I hope you're feeling better Bam. I went on my first bike trip yesterday and it was very fun and refreshing. It was nice to be outside in nature!

Good job Jack! Did you wear your furry ear pieces?

 

[TuxedoCat]

Yes this research looks really encouraging.

For me its encouraging to see that Rauschecker is moving forward. Personally, I would like to support as much research as I can among investigators looking at how the tinnitus is being generated in the brain. If Sedley is moving forward with his hypotheses and Rauschecker is moving forward with his and if what I've seen happen in other areas holds true in tinnitus research, at some point there will be a meeting of the minds and those researching at the brain level will have a healthy but civilized debate and come up with ideas for ways forward that can be tested and proved or disproved in their labs. Its an iterative process that will have to be repeated many times until the final answer is worked out. And it may not happen in our lifetime but for the sake of all the upcoming generations it has to be done.

It's dismal on the other hand to see more of the free publicity for MuteButton on here - yet another expensive audiology device which had been shown to be ineffective in the past - being given a platform at the Talking Tinnitus conference to sell to desperate tinnitus sufferers.

Hopefully in years to come the vendor floor at the Talking Tinnitus conference will look radically different than it did at the first EXPO.

People will vote for products with their dollars or pounds or whatever currency - some will be early adopters and others will wait to see how it works based on reviews from others. The early adopters may pay the price of an education but if the product doesn't work it will fade away. Maybe we'll see a plethora of MuteButtons cheap on eBay! Seems like right now the market is experiencing incremental changes which may or may not be successful. The people developing those products may not yet have arrived at a full understanding of tinnitus. This indeed could be somewhat of a dismal time. I'm not an early adopter so instead I'll use the time and those dollars to support what I think is the right research for a step or radical change. Besides it's not all bad here, I would never have known about Thanos Tzounopoulos or Will Sedley had it not been for Tinnitus Talk.

In terms of trying to help those with tinnitus avoid wasting their money, what would be really helpful is a users advisory panel that would try out products and post objective reviews. For example in the US we have Consumer Reports; they review everything from cars to hearing aids, but I've never looked to see if they review products for tinnitus. I'll have to look into that. I don't know if its feasible for Tinnitus Talk to form such a panel, it would take money, a lot of work because the rating criteria would have to be worked out for every product tested and it might be a minefield in terms of legalities. -TC

PS - Was MuteButton actually for sale at the EXPO or was it an information stand?

 

[Jack Straw]

Good job Jack! Did you wear your furry ear pieces?

Ha Ha! No, I did not as I am waiting for them in the mail. Will take around two weeks.

I stayed under 15 MPH so the wind noise wasn't incredibly loud, but I will be wearing a headband next time over my ears till I get them.

 

[Jazzer]

Speaking as a person with severe tinnitus I do not want to be shouted at and told that it is torture and a virtual death sentence.

I also have severe tinnitus, and I take your point very well.
I do not necessarily want to be reminded about just how bad it is.
But I do not lie to myself because it doesn't work.

We have the full spectrum on this site, from:
"I simply trained my brain not to listen to it,"
to
"I don't know how to carry on with my life!"

If we do not admit to the full range of severity there will be hardly any notice taken of the warning anyway.

It isn't some cozy little complaint, like cillblains, that can be cured with a few 'old wives tales.'

The lung cancer campaign didn't just say,
"now look - if you smoke, you could get a nasty cough!"
Lung Cancer Kills!!
It told the truth.

Someone, somewhere along the line, should be telling the truth.
Just my views.

 

[david c]

Hopefully in years to come the vendor floor at the Talking Tinnitus conference will look radically different than it did at the first EXPO.

People will vote for products with their dollars or pounds or whatever currency - some will be early adopters and others will wait to see how it works based on reviews from others. The early adopters may pay the price of an education but if the product doesn't work it will fade away. Maybe we'll see a plethora of MuteButtons cheap on eBay!
PS - Was MuteButton actually for sale at the EXPO or was it an information stand?

Yes you make some interesting points there. In terms of MuteButton I quote from one of the people from Tinnitus Talk who were at the Talking Tinnitus event:

"I had a good chat with the lady who was hosting the Neuromod stand and she explained she was very keen approaching NICE which would be the first step in eventually making the device available through the NHS (UK). Am not sure what her role in the organisation was hence with what authority she was talking but her words were encouraging."​

No way in the world is NICE going to approve MuteButton (by way of comparison they are turning down plenty of drugs/treatments with proved efficacy) but talking about this by the saleswoman of course gives their device some legitimacy and will doubtless be taken at face value by those of a more credulous nature.

Equally of course they are sponsoring some clinical trial - again this gives their expensive device some apparent credibility and what we have found out from the example of Acoustic Neuromodulation is that clinical trials can be binned halfway through if they are not delivering the results their commercial sponsors like.

 

[Greg Sacramento]

Just a thought with little research, but maybe the use of a highly professional investment or a wealthy lifestyle site or publication could help us. A site where the super rich, money, fund, asset and hedge managers use. If just a couple of money managers or wealthy investors pulled out a checkbook it could be worth it.

Barron's, Quintessentially, Pure Entertainment Group, Traveler Made, DG Amazing Experiences, Forbes Group.

 

[TuxedoCat]

"I had a good chat with the lady who was hosting the Neuromod stand and she explained she was very keen approaching NICE which would be the first step in eventually making the device available through the NHS (UK). Am not sure what her role in the organisation was hence with what authority she was talking but her words were encouraging."

Well, if the person at the information stand is the same person who will be approaching NICE, I would guess Neuromod is a very small organization.

Also, I'm not familiar with NICE, but in the US it's sometimes possible to meet with FDA to get their comment on a study protocol or a clinical development plan. That doesn't mean FDA approval of the product or drug is guaranteed.

And while you or I would rather that the Neuromod person not say such things, it's pretty difficult to control what is said in an environment like an Expo.

I don't know what criteria BTA used for selecting or approaching vendors, but if MuteButton is not yet for sale, having them there was for information only, if it never comes to pass, no one will have paid any money for a yet unproven device.

I was over at the MuteButton thread, I notice Neuromod are making some claims about the device with no obvious substantiation in what looks to be a trade publication. All I can tell you is that sort of thing is not unheard of, especially in trade journals. It's sort of like a peacock displaying its feathers to attract a mate. Neuromod wants the target audience of the publication to be on the lookout for the device and are building expectations.

The question is have they overbuilt or overpromised? No one will know the answer until the clinical studies are published and there is some user feedback if it comes to market.

I'm curious to see what happens because if you read the article in the trade journal it talks about how "the tinnitus industry is plagued with a credibility issue stemming from the misuse of words like "cure" when "management" was more apt, and the history of the field is one of false hope followed by skepticism."

It then goes on to talk about some rather high powered names, if such a thing exists in tinnitus, being on their scientific advisory board, as if that will overcome any credibility issues. Again, it could be more peacock feathers.

Wait for the full study write-ups so you can evaluate. The Tinnitus Functional Index and the Tinnitus Handicap Inventory both have multiple questions. It's likely the results will be reported based on total scores, but if you are interested in its effect on loudness for example you want to see the subscale scores and the individual question scores. And keep in mind clinical significance is as important as statistical significance.

Equally of course they are sponsoring some clinical trial - again this gives their expensive device some apparent credibility and what we have found out from the example of Acoustic Neuromodulation is that clinical trials can be binned halfway through if they are not delivering the results their commercial sponsors like.

Sometimes an interim analysis of the data is planned and the trial can be binned as a result. Good statistical advice is needed because there can be adjustments to the p-value needed to declare significance. Sometimes an interim analysis is done to monitor safety outcomes and a trial can be stopped if the test product is unsafe.

Personally I believe if it's too good to be true it probably is. But I'm always happy to be proven wrong.

 

[TracyJS]

 

[Steve]

Just a thought with little research, but maybe the use of a highly professional investment or a wealthy lifestyle site or publication could help us. A site where the super rich, money, fund, asset and hedge managers use. If just a couple of money managers or wealthy investors pulled out a checkbook it could be worth it.

Barron's, Quintessentially, Pure Entertainment Group, Traveler Made, DG Amazing Experiences, Forbes Group.

One person, Matteo De Nora, did just that. He had tinnitus and decided to open his wallet - so began Tinnitus Research Initiative.

Without that we would be significantly further behind in tinnitus research. There has got to be someone else out there who can see the opportunity that funding could bring at this point.

 

[Jazzer]

Steve the way I see this can be put in two steps:

1. Continue tiptoeing and balancing between harm and benefits and reap the "results" that we have had to this day! (read: an absolute zilch for tinnitus sufferers but not so bad for all the others involved).

2. Change the rotten and outdated strategy and tell the world what it can be like! No one is immune to severe tinnitus, neither those who have never had it nor those with mild form!

Do you think that a newly diagnosed MS or Parkinson's patient doesn't do research or isn't aware of how bad things can get?

How many cancer patients aren't familiar what's the end result if diagnosed with an aggressive form?

Why aren't tinnitus patients informed how bad things can get? Why do we continue sweeping the harsh reality under the carpet?!

And if you tell me that severe cases represent only 1% then this unfortunate percentage needs a more serious representative than the BTA and ATA.

BTA and ATA should clearly state they are not interested in the bad and ugly but only mild cases that can benefit from treatments endorsed on their websites and continue with what they have been doing for over 4 decades now!

So it all comes down to what those representing us truly see as an important target!
It's either to help us or to continue supporting "milking" businesses involved!

It's that simple! It's black and white with no need for 50 shades of grey in between!

God do I wish I had more power

I agree with every word.

Sugar coating Tinnitus is a crime.

Our voice is being institutionally ignored!

 

[david c]

I agree with every word.

Sugar coating Tinnitus is a crime.

Our voice is being institutionally ignored!

Of course it is. It makes absolutely no sense at all to downplay the impact of tinnitus. No other major health charity seeks to downplay the impact of the illness/condition which they represent - they know it simply leads to apathy. Unfortunately in the UK the BTA and AoHL are compromised by their links to Corporate Tinnitus through their commercial sponsors.

One simple thing the BTA could do. In the UK certain health conditions - such as asthma - attract specific NHS funding - so that GP practices with patients suffering from these conditions will attract extra funding if the GP guarantees to offer specific support to the patient - for example annual reviews of their condition.

Tinnitus doesn't get that funding. One very straightforward objective for the BTA is to ensure that it does get that funding. It would be something that would really make a difference to sufferers for severe tinnitus.

Yet the BTA has never even bothered having this as an objective. Shows just how much they care. Not.

 

[Starthrower]

I think we can find a way of presenting things that doesn't ignore the 1-2% but if we go for pure shock we could cause a lot of harm, particularly to people in a vulnerable state and to children. I don't want to sweep it under the carpet but I also want to see the message balanced and with forethought.

@Steve I have struggled with this aspect of tinnitus myself. Shock value... lives lost. This is forgotten. Ignored. Blamed on "other" conditions or life situations.

Saying I have come this far with severe tinnitus makes the issue seem like it is not life threatening.

I am still searching for that balance.

 

[Steve]

@Steve I have struggled with this aspect of tinnitus myself. Shock value... lives lost. This is forgotten. Ignored. Blamed on "other" conditions or life situations.

Saying I have come this far with severe tinnitus makes the issue seem like it is not life threatening.

I am still searching for that balance.

I think that it can be the most powerful if it's delivered in a "matter of fact" way. If there is an element of hysteria about the message or the person delivering it you often lose the room.

The thing about the shock value is that it makes an initial impact but it doesn't stick. I think you either have to have it or have experienced tinnitus to really get it.

I would actually like to learn more about why people don't talk about their tinnitus. There are voices on here of course but on the whole people just do not share. Maybe if we could get to the bottom of the reason we could have more effective awareness campaigns that people would stand behind.

It could be a really good awareness video - I don't talk about my tinnitus because...