MuteButton

[SignalExec]

camp out at the bunny ranch or something.

Is that a euphemism for something?

 

[Bndsmheowqhe]

It does all boil down to money, doesn't it?

Like camp out at the bunny ranch or something.

You'd probably be haunted by the ghost of Eric the Actor.

 

[Don Tinny]

I am not sure it's the thread in general. I think it's a few individuals that are all over the place. I know a bunch of us never stopped having hope in the product.

I am less hopeful but I know that it's everything we have now. FX-322 and other neuromodulation devices are still years away.

 

[Bam]

I am less hopeful but I know that it's everything we have now. FX-322 and other neuromodulation devices are still years away.

Worth remembering we have nothing 'now'........I would guess even Neuromod is another year away.

 

[El BUZZ]

It does all boil down to money, doesn't it?

I know I'm already thinking about how to put aside $5K in a lockbox for Neuromod. There are things I would do with the money otherwise so I have to plan accordingly. If I knew I had to go through upwards of $20K instead of $5K I'd have to really plan ahead. I mean, I'm already on the hook for college tuition for my daughter and my car is literally falling apart at the seams.

This is where transparency is key with these companies. I really want to know what the odds are before I plunk down my money. I don't want to blindly drop $15-20K down the toilet for the equivalent of a low-odds roll at the roulette wheel. There's a lot of short-term gratification I could buy for that kind of money that would at least be guaranteed to temporarily take the edge off my tinnitus, like camp out at the bunny ranch or something.

What's your personal estimation about the price this MuteButton device could reach?

 

[Bam]

What's your personal estimation about the price this MuteButton device could reach?

Personally I think it will be £4000 but it could be half that.

Interestingly the price is going to be a huge tell on how confident they are to sell large numbers. A lower price point would be a great sign of confidence in its efficacy, and ability to yield results that help it sell several million units and create massive profits from a relatively low cost unit.

A high price would be reason to be very wary. It would indicate they are just looking at a smash and grab on desperate sufferers before the next device rocks up in two or three years.

 

[grate_biff]

Guess there is not going to be a "money back guarantee" with this device .

Although, if it works, nobody in their right mind would ever think of returning it.

 

[dayma]

What's your personal estimation about the price this MuteButton device could reach?

Who knows. My wild prediction would be $2,500 and around $500 in servicing charges/appointments.

 

[DaveFromChicago]

BAM's point is very germane and insightful. My total cost when I underwent the Desyncra "therapy" (including the hearing test) was $5,504.00. I recalled that reports regarding the cost of the LEVO System approached $6,000.00. In the US, these are regarded by Health Insurance Carriers as "investigative and experimental" and therefore not covered. The reasonableness in price will be a major factor regarding the probability that we can have at least a modicum of confidence in its effectiveness.

 

[dayma]

BAM's point is very germane and insightful. My total cost when I underwent the Desyncra "therapy" (including the hearing test) was $5,504.00. I recalled that reports regarding the cost of the LEVO System approached $6,000.00. In the US, these are regarded by Health Insurance Carriers as "investigative and experimental" and therefore not covered. The reasonableness in price will be a major factor regarding the probability that we can have at least a modicum of confidence in its effectiveness.

LEVO in the States is running $4K "all in". At least in my area.

 

[Bam]

BAM's point is very germane and insightful. My total cost when I underwent the Desyncra "therapy" (including the hearing test) was $5,504.00. I recalled that reports regarding the cost of the LEVO System approached $6,000.00. In the US, these are regarded by Health Insurance Carriers as "investigative and experimental" and therefore not covered. The reasonableness in price will be a major factor regarding the probability that we can have at least a modicum of confidence in its effectiveness.

Thanks.

These previous sound therapy devices were purely aimed at the suicidal and desperate. Companies knew they would never take off and so priced them accordingly. They wanted to turn a quick and easy buck before anyone came up with something that actually works.

A device that really reduces volume could literally sell hundreds of millions so even priced at £100 would make billions.

If it's cheaper than expected it's a very good sign. If it's anywhere near 4 grand it's a scam and won't do shit........You might as well repeatedly flush cash down the loo to mask your tinnitus.

 

[El BUZZ]

If they sell it for under 2000€, it will definitely be a good sign for us, for them and for the Guinness factory which is just around the corner of their premises. It will be filled with people from everywhere sucking both a cable connected to a phone-like device and a straw connected to a foamy pint of the black stuff.

 

[GlennS]

A device that really reduces volume could literally sell hundreds of millions so even priced at £100 would make billions.

We don't really know Neuromod's financials. What did it cost them in R&D and initial tooling/manufacturing? Economy of scale, even for something commodity-level like this, takes a while to kick in. I don't think it's unreasonable to ding early adopters to recoup those costs if they are substantial. Doesn't mean they are Martin Shkreli types.

 

[annV]

I will post my boobs here if the device costs less than €3000 EUR.

 

[Drone Draper]

I'm expecting it to cost about £4k.

 

[GlennS]

I will post my boobs here if the device costs less than €3000 EUR.

Now I have a real reason to check this site daily.

 

[grate_biff]

I will post my boobs here if the device costs less than €3000 EUR.

Now I have a real reason to check this site daily.

I'm scared now.

 

[Bam]

I'm expecting it to cost about £4k.

I agree. But if it is that amount we have to seriously open our eyes.

Let's take a look at the facts...

The name change from 'MuteButton' to Lenire or whatever it is now that is careful to promise nothing in the title and sounds horribly like Levo.

4 grand for what is ostensibly a cheap Walkman... Bit weird huh that it's the same price as its two useless predecessors ACRN and Levo. Especially if this is the 'cure' we've been waiting for and is going to take the world by storm and sell millions of units. Do Amazon sell Alexa for 4 grand or 80 quid?!! Think about it. They have confidence she's gonna tell you what the weather will be like and nail it every time. And your friends and granny will buy one too. They can keep that girl cheap cos she's popular as hell and does what she's says she'll do.

The total radio silence on here. Why aren't they engaging with us beyond a heavily censored and edited interview which avoided a lot of the searching questions we wanted answered?

Why aren't they hyping this in mainstream media that are obsessed with tinnitus suicides and would be very interested in a cure?

The fact that Susan Shore is unfazed. I emailed her for thoughts on tongue stimulation and she only told me if I was struggling to contact Action on Hearing Loss. I could almost hear her smirking at how little she is troubled by Neuromod's approach.

The sketchy release date and the fact that they're planning on hiding behind the 'industry' and audiologists just like Levo and ACRN. Why can't we just deal direct with them?!? Send our hearing test results and they post us the calibrated device ready to go. Why the middle man?!? Hell why not just flog it through Amazon?!? Why overcomplicate it unless you are looking to inflate the price.

I challenge their main guy whatever his name is to answer these questions and even though we know he reads this thread, he won't.

I call bullshit on this device at this point in time. There is way too much fishy shit around it all.

 

[dayma]

Do Amazon sell Alexa for 4 grand or 80 quid?!! Think about it. They have confidence she's gonna tell you what the weather will be like and nail it every time. And your friends and granny will buy one too. They can keep that girl cheap cos she's popular as hell and does what she's says she'll do.

Kinda different approaches. Amazon sells their devices to enable the month over month sub costs not to make money off the device itself. If you get people locked into the eco-system it's a constant revenue stream.

 

[GSC]

I agree a lot with Bam. If a device actually works and does what it is said to do then they would want everyone who has this condition to be able to get their hands on it.

They would want it be covered by health insurance too possibly. Able to be in the hands of all classes, low income, working and the rich. If the price is inflated, then there won't be that much of a break through and there won't be a media storm on it.

HIV treatments cost $2,000-5,000K a month. Insulin for diabetics $300-600 here in America. I never got the idea of having shit be so expensive when, if it was accessible, it'll sell out more and reach the masses.

I mean you can even get gene therapy to supposedly reverse blindness, but I never heard any of that take the world on by storm, because of the COST of it.

All in all, I honestly think it will cost $5K when it shouldn't since this is considered a treatment, not hailed as a CURE. And it doesn't tackle the premise of hearing damage that can still trigger tinnitus in a later period of life, or after another acoustic trauma or a noise exposure. And its results, judging by the testimonials, vary too vastly from person to person. It should not cost this much, but it most likely will.

 

[Markku]

Why aren't they engaging with us beyond a heavily censored and edited interview which avoided a lot of the searching questions we wanted answered?

Are you aware of something I'm not? Because as far I know, having seen the full interview, and having been responsible for editing the raw footage, there was not any censoring or editing that would have changed the narrative or content that took place. Since it was mostly done in one take, there were bits and pieces that needed to be removed because they referenced the ongoing TENT-A2 trial or were simply mistakes, such as stating someone's name wrong.

4 grand for what is ostensibly a cheap Walkman...

To even compare Neuromod with a cheap Walkman is absolutely ridiculous, completely incomprehensible, utterly laughable. You have to appreciate the element of bimodal stimulation and the fact that several groups are investigating it. The amount of R&D and money Neuromod's investors have put into this and the extensive trials, that alone is something extraordinary what you don't usually see in the tinnitus research field. We could argue about the trials of course, there not having been a true placebo arm. That is disappointing for sure.

But damnit, at least they are trying to put their treatment through extensive testing, and they shall be judged for the results, AFTER we have the results, AFTER the peer review is published, AFTER there are more testimonials. Totally shooting them down without any regard for their efforts and recognizing their willingness to put their money where their mouth is, in my opinion, nonsense.

At the end of the day though, I'm not one to blindly defend Neuromod or any single company for that matter. I try to remain as objective as possible. I think they could have tried to handle the PR side of things better, and have better coordination. I also feel slightly disappointed I've not yet heard back from them after sending my and the community's concerns to them, but I'm more than willing to give them the benefit of the doubt, especially knowing that they've got limited work force, and I can imagine they have their hands full with the conferences and meetings - on top of all the other presumed preparations to make sure the device can launch ASAP. And if their set policy is to not share more information until they have something concrete to state, i.e. a formal launch date, then I think we should respect that.

If I had been part of Neuromod, I would have hired a person to deal with the patient community (not just Tinnitus Talk but others as well, including the Facebook ones), try to answer to concerns, keep people updated, share some of behind-the-scenes on-goings at the company, etc. There surely would be restrictions on what such a person could share and talk about though.

That said, I give Neuromod a lot of credit for agreeing to do the Q&A video. Not all companies would have done even that. We have tried approaching some well-known companies working on tinnitus treatments and never heard back, or have been shrugged off.

Maybe this quietness now, and a sort of a feeling of disconnect between the patient community and Neuromod, comes as a bit of a disappointment to some members after the very positive Q&A and the openness Dr. Ross O'Neill showed to us.

 

[GlennS]

The total radio silence on here.

Give it a rest. They've been as transparent as a company like this should be expected to be.

The fact that Susan Shore is unfazed.

The same Susan Shore who seems to be doing little besides visit the water cooler each day and mark Xs on the calendar? Now you're going to put her on a pedestal? She's unfazed alright...because tenure. If you're putting all your hopes on her device, get ready to hurry up and wait.

Why can't we just deal direct with them?!?

Because dealing at the level you're expecting is tantamount to harassment--especially when it's accompanied by these accusations. When they're ready, they're ready. Give them some space.

Why the middle man?!?

Have you ever run a startup company? Do you know all the variables involved? The backseat driving here is getting out of control.

I call bullshit on this device at this point in time.

Call bullshit all you like. Don't expect everyone else to pile on because you're feeling a little paranoid.

 

[Bam]

Kinda different approaches. Amazon sells their devices to enable the month over month sub costs not to make money off the device itself. If you get people locked into the eco-system it's a constant revenue stream.

Dayma from what I can see you would argue black is white on everything particularly if it comes from me. I don't know if it's because you so want to believe that what these people are peddling is the real deal or if you're scared or angry or I don't know......whatever. The bottom line is I'm not your enemy. I'm trying to convey what is staring is all in the face and we're all in denial over.

When someone creates an actual cure or something close the WHOLE WORLD will read about it. Headlines such as, 'that annoying ringing in your ears is now a thing of the past!' will pop up in the daily mail. Your friends will what's app you and Facebook you about it. It won't be confined to inane chatter on an obscure web forum. And the company that create it won't be hiding from the world after leaking some pathetic testimonials from a bunch of people who are not sure if it's helped or not..... Jesus LEVO came up with more convincing videos!!

We're all desperate, holding on to this weird belief that this is it, it's all over! That we're not seeing the heap of bullshit that's staring us in the face and grows bigger and smellier by the day.

 

[ee9892]

I will post my boobs here if the device costs less than €3000 EUR.

Neuromod on Twitter: "After careful deliberation we have decided to price the device at €3000.01"

 

[dayma]

Dayma from what I can see you would argue black is white on everything particularly if it comes from me. I don't know if it's because you so want to believe that what these people are peddling is the real deal or if you're scared or angry or I don't know......whatever. The bottom line is I'm not your enemy.

I don't see you as an enemy or anything like that man. I may not agree with what you say and that's OK. I will always do it in a respectful way or at least try to. You are a passionate person and I respect that.

 

[spedgas]

I agree. But if it is that amount we have to seriously open our eyes.

Let's take a look at the facts...

The name change from 'MuteButton' to Lenire or whatever it is now that is careful to promise nothing in the title and sounds horribly like Levo.

4 grand for what is ostensibly a cheap Walkman... Bit weird huh that it's the same price as its two useless predecessors ACRN and Levo. Especially if this is the 'cure' we've been waiting for and is going to take the world by storm and sell millions of units. Do Amazon sell Alexa for 4 grand or 80 quid?!! Think about it. They have confidence she's gonna tell you what the weather will be like and nail it every time. And your friends and granny will buy one too. They can keep that girl cheap cos she's popular as hell and does what she's says she'll do.

The total radio silence on here. Why aren't they engaging with us beyond a heavily censored and edited interview which avoided a lot of the searching questions we wanted answered?

Why aren't they hyping this in mainstream media that are obsessed with tinnitus suicides and would be very interested in a cure?

The fact that Susan Shore is unfazed. I emailed her for thoughts on tongue stimulation and she only told me if I was struggling to contact Action on Hearing Loss. I could almost hear her smirking at how little she is troubled by Neuromod's approach.

The sketchy release date and the fact that they're planning on hiding behind the 'industry' and audiologists just like Levo and ACRN. Why can't we just deal direct with them?!? Send our hearing test results and they post us the calibrated device ready to go. Why the middle man?!? Hell why not just flog it through Amazon?!? Why overcomplicate it unless you are looking to inflate the price.

I challenge their main guy whatever his name is to answer these questions and even though we know he reads this thread, he won't.

I call bullshit on this device at this point in time. There is way too much fishy shit around it all.

I think it's healthy to be a little skeptical at this point. My level doesn't match yours though. I think what's going to hurt Neuromod after release is that they won't get reductions to that 80 percent of people they claim. They achieved that 80 percent by hand selecting trial participants. I'll have to re-examine the trial parameters and who they excluded. Once people start using it in the wild there will be much more variability in the people that use it. I'm guessing there will be more variability in results too.

We agree on one thing though. I've also emailed Susan Shore a few times. She is absolutely unfazed and not losing any sleep over not being the first to market.

 

[dayma]

Neuromod on Twitter: "After careful deliberation we have decided to price the device at €3000.01"

I just literally LOL'ed. I bow before you.

 

[Bam]

If a device actually works and does what it is said to do then they would want everyone who has this condition to be able to get their hands on it.

This. This is the crux of it. And you would pave the way for it to be done as simply and cheaply as possible. Successful products are ones that do the job they're built for, are easily available and priced to sell.

 

[Bam]

I don't see you as an enemy or anything like that man. I may not agree with what you say and that's OK. I will always do it in a respectful way or at least try to. You are a passionate person and I respect that.

Thanks dude. I just want to see us all get treated fairly and honestly. We deserve a company that wants to truly help us. We need a champion....no more bullshit. We've suffered enough scams and con artists. I would love it if Neuromod make billions, but only if we get silence in return.

 

[Bam]

We agree on one thing though. I've also emailed Susan Shore a few times. She is absolutely unfazed and not losing any sleep over not being the first to market.

I have a real strong feeling she's going to nail it and change the game. She seems very confident and Michigan have massive funding. I don't like the woman much if I'm honest. I find her clinical and cold. But I do think she's going to achieve what Neuromod couldn't and basically cure tinnitus and win a Nobel prize. But it's going to be 3 years away and I'll be long sunk.