MuteButton

[Bam]

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.

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.

I want you to be right Markku. I see what you're saying. I appreciate your hard work. Who doesn't like you? We all do. You're just the polar opposite of me. Calm, collected, measured.

Let's be honest. I'm crazy and desperate as hell for some relief from this noise and I cannot mentally withstand the disappointment of pissing away another 4 grand on a pile of scammer shit that gets confined to the same drawer that my Levo sits collecting dust.

 

[Tanni]

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.

Bam, you're awesome so hang in there! By your own admission, three years and some serious leeway at the very least!

 

[El BUZZ]

Someone from a near future will be reading this knowing what happened with all this Neuromod stuff after the dust has settled. And I'm sure that person will be laughing and drinking a Guinness. Any speculation until then is just smoke.

 

[Jack Straw]

I want you to be right Markku. I see what you're saying. I appreciate your hard work. Who doesn't like you? We all do. You're just the polar opposite of me. Calm, collected, measured.

Let's be honest. I'm crazy and desperate as hell for some relief from this noise and I cannot mentally withstand the disappointment of pissing away another 4 grand on a pile of scammer shit that gets confined to the same drawer that my Levo sits collecting dust.

I think this situation is very different. This device isn't a sound therapy or even close to it. This type of treatment has simultaneously been worked on by four different entities. One in Ireland, two creditable US universities, and one other in the works in Europe. Why would they waste their time on something that doesn't work?

We also know it works because we have had multiple forum members discuss that it works. @kelpiemsp has even stated that his tinnitus went from a 8/10 to a 3/10. He said he barely thinks about it anymore. @Clare B has even stated that hers has gone away completely.

I understand skepticism, but this is by no means a scam. They are going out of their way to get peer reviewed in order verify their results as legitimate. Seeing that no tinnitus treatment before has done anything they have done, I think we can respectfully give them the benefit of the doubt that it isn't a scam. This will obviously not cure or treat everyone, but I will guarantee that it will help some people get away from this hell. If there was a 10% chance for this to help me, I would happily throw $4,000 at it. This has a 67% statistical improvement. I sure as hell am going to give it a try.

 

[Markku]

I want you to be right Markku. I see what you're saying. I appreciate your hard work. Who doesn't like you? We all do. You're just the polar opposite of me. Calm, collected, measured.

Let's be honest. I'm crazy and desperate as hell for some relief from this noise and I cannot mentally withstand the disappointment of pissing away another 4 grand on a pile of scammer shit that gets confined to the same drawer that my Levo sits collecting dust.

I gotcha. Sorry you got burned before. The latest news of VA covering LEVO for military personnel makes my heart ache. I've unfortunately witnessed the hypes, over-promises and disappointments of various treatments and clinical trials over the past 9 years (8 years on Tinnitus Talk, the community's eighth anniversary was March 5th!) - and what comes to Neuromod, they are not going to get a free pass. They are rightly so subject to all the vigilant research and assessment that others are to as well.

I like seeing the back-and-forth here, discussing the science behind it, analyzing the robustness, strengths and weaknesses of the trials, their marketing efforts, and whatnot.

It's very good the tinnitus community starts to take everything with a grain of salt and keeps a questioning mind. I just hope none of us start calling companies - by default - scammers and ruthless bastards wanting to exploit the sufferers too early on, before evidence of such activity surfaces, if it ever does.

While I have no reason to doubt that Neuromod has all along wanted to build and sell a treatment that truly works to alleviate tinnitus instead of producing yet another box for habituation, they are still a for-profit company and, being cognizant of the poorly regulated medical device field out there (which @Agrajag364 has often talked about in depth), they are not irreproachable. Or humanitarians. They found a space that sorely lacked treatments and saw an opportunity to potentially make big bucks. Nothing wrong with that as long as it's done appropriately and scientific, medical and ethical guidelines are followed. Always look for evidence from unbiased sources. I'm happy to see more and more Tinnitus Talk members are starting to do that.

 

[GlennS]

it's going to be 3 years away and I'll be long sunk.

It would be better for you to work on your ability to persevere rather than linking your personal survival to the outcome of these two. As much as I'm sure these entities would love to feel like they're saving lives they are going to get freaked out by those who are shaking their tree because they feel like their time is running out ala Roy Batty in Blade Runner. Don't make it feel like your life or death is their personal responsibility.

 

[Agrajag364]

One possible contributory reason for the delay from the promised early 2019 might be that Neuromod get the impression from here and other forums that they'll get very intense scrutiny and analysis of not only their clinical trial data when they finally publish it but also of the early real life outcomes as so many will post online. That kind of patient scrutiny was not happening with the same intensity even five years ago. So it might be that they're just being particularly careful about the quality of the clinical trial data et cetera, or, If they've already submitted for peer review, perhaps they have decided to wait til the papers are out before releasing the device onto the market, again perhaps to reduce criticism.

Given the dearth of tinnitus treatments I'd hate for critical discussion and analysis to put them off – frankly if this thing helps even 20% percent of people it's going to be a best seller! But that doesn't change the fact that patients should critically analyse available information!


A second possibility for the delay might be Brexit. I suppose the UK is a potential significant market, and at the moment it is not entirely clear whether certification from one of Europe's "notified bodies", the organisations that approve medical devices, would be valid in the event of a no Deal Brexit.

I think the fact they did a q and a with TT speaks well of then. Whist I was a bit discouraged by those latest videos from Neuromod Clare and Kelpie's outcomes are still very exciting.

 

[david c]

I'm expecting it to cost about £4k.

That could be bad news or (if you are a close follower of this thread) a bit of a blessing.

 

[El BUZZ]

@Bam what about hearing aids? They have been being sold worldwide for a long while now at outrageous prices (6000€ + or - in here) and all they do is masking or amplifying some frequencies (and I bet they are nothing more complex than a Walkman). There's not a single day I don't meet someone wearing them.

I think a price of over the 4000€ could be justified by the fact of all the research and hard work Neuromod has put behind this.

 

[EDDTEKK]

Why do you quote @kelpiemsp? He wasn't treated with the Neuromod method.

And in Clare B's case it is not sure if the treatment helped. She also said this. Her tinnitus could have gone away naturally even if there had been no treatment.

Let's not take these anecdotes as proof of efficacy of Neuromod's treatment.

 

[GlennS]

Why do you quote @kelpiemsp? He wasn't treated with the Neuromod method.

Because we're grasping at straws. My guess is 6-12 months after this device starts to circulate openly in the EU that, statistically speaking, we really should see a slow trickle of users start popping up in this forum, perhaps including some long-time members who have decided to take the risk. That's really what it's going to take to start to clear the mystery surrounding this stuff.

 

[PDodge]

@kelpiemsp is more of a testament to the method than the device. Bimodal stimulation can work, lets hope Neuromod does too

 

[Fabrikat]

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.

Perhaps the people who should be emailed are those who pay her wages and asking the board why the university is allowing potential rivers of gold flow past their coffers, with a lethargic approach to commercialisation of a highly sought after product.

 

[Fabrikat]

As an electronic box that plays a sound through a headphone and then issues a timed mild electric zap to a part of the body and with publicly available protocols and instructions, I do not discount the possibility that the DIY whizzes of the internet will find bimodal stimulation fully hackable.

 

[annV]

As an electronic box that plays a sound through a headphone and then issues a timed mild electric zap to a part of the body and with publicly available protocols and instructions, I do not discount the possibility that the DIY whizzes of the internet will find bimodal stimulation fully hackable.

Assuming it can be hacked... Would you steal a car too? It's Neuromod's intellectual property, hacking it, sharing it, and using it would be piracy.

 

[spedgas]

Perhaps the people who should be emailed are those who pay her wages and asking the board why the university is allowing potential rivers of gold flow past their coffers, with a lethargic approach to commercialisation of a highly sought after product.

Once again we have started a campaign to rush another group to market before they are ready using threats. I think Susan Shore knows what she's doing, but she's tested it on a small fraction of the people Neuromod has. I wouldn't use her device if it was pushed to market tomorrow. It's clearly not ready.

 

[Helheim]

Assuming it can be hacked... Would you steal a car too? It's Neuromod's intellectual property, hacking it, sharing it, and using it would be piracy.

I mean... if that's the only way I could afford it, I wouldn't mind much lol

 

[Agrajag364]

Why do you quote @kelpiemsp? He wasn't treated with the Neuromod method.

And in Clare B's case it is not sure if the treatment helped. She also said this. Her tinnitus could have gone away naturally even if there had been no treatment.

Let's not take these anecdotes as proof of efficacy of Neuromod's treatment.

It's not proof but it is interesting. Clare B had had tinnitus for 1.5 years. Kelpie wasn't NM yes but based on same theory.

Much less excited since the Neuromod videos though.

 

[Fabrikat]

Assuming it can be hacked... Would you steal a car too? It's Neuromod's intellectual property, hacking it, sharing it, and using it would be piracy.

Indeed @annV, assuming it can be hacked, hacking can involve taking someone else's intellectual property and reproducing it for one's own benefit.

Although I think you need to come up with a better analogy. I'm free to build myself a car, from a collection of generic components. However, I'm not free to build that car, say in the shape of a Mercedes Benz and call it a Mercedes Benz.

 

[Martin69]

Sorry for being a downer here. But I am very skeptical that it will help.
At least it seems that things are delayed and why is that? If it worked that good, they would have already started selling it.
And also if they have such good testimonials, why not give this device to some severe cases here and let them test it?

One another thing that I do not understand:
In the interview, they say that they did brain scans and saw increased activity (as we also know from other sources).
So what about another brain scan that shows less activity after using the device?

Don't get me wrong. Better being skeptical and then positively surprised by better results.
But I would not bet too much on this device.

Agree with @Markku here. Many positive things were promised and disappointments followed. I remember the day Autifony trial was terminated. It was a really bad day.

My suggestion instead - Improve your body as much as possible:
- Do regular exercising (running, walking, swimming, bicycling) to work against depression and to get energy.
- Nutrition. Understand what you eat and what you do to your body with every food item you take.
- Look into intermittent fasting to start autophagy and work against inflammation.
- Make a blood test and fill up deficiencies with supplements or appropriate food.
- Resolve all trigger points in your neck, back and jaw area (for example masseter muscle).
- If you cannot sleep, take Remeron (I use a low dosage of only 7.5 mg) and it lets me sleep 8-10 hours.
- If you need something against anxiety, take Lexapro (5-10 mg should be fine, but you can go even to 20 mg).
- In really bad moments, you could take a Xanax (Tavor in Germany). But I haven't taken any for two years now.
- Donate some money to Tinnitus Talk so that this wonderful forum continues to exists. It can be a life-saver.
- Find someone that you can speak with whenever needed. If not, use the forum here.

Yes, none of this takes away tinnitus from you. But it helps to deal with it and push through every day.
I have done all the above and I am still trying to improve things. I cannot tell if my tinnitus improved. I have still my 10/10 days, but my impression is that they have become less frequent.

And NEVER lose hope that your tinnitus can become better or that a device/medicine will be found in the future to lower the volume or to stop the tinnitus completely.

 

[Bam]

I wouldn't use her device if it was pushed to market tomorrow.

I would......seeing as I'm giving serious consideration to murdering myself, connecting a mild electrical current to my neck and listening to a series of beeps doesn't seem too terrifying.

 

[Drone Draper]

We mustn't be too hasty to discount this device based on price. Neuromod is a small company, so it can't afford to sell something cheap, especially not at the beginning. The reason why Amazon sells the Echo so cheaply is because they are a billion dollar conglomerate with over 300 million users. Neuromod is a small start up in a Dublin business park. The economies of scale are just not there. If this technology proves successful, maybe other companies will be able to drive the price eventually, but that could take time.

 

[Bam]

If this technology proves successful, maybe other companies will be able to drive the price eventually, but that could take time.

Probably wishful thinking but if bimodal stimulation does prove successful drug companies may sniff the gains and step it up on the curative front.

 

[dayma]

Why does there seem to be more trust in the stuff happening in Michigan when compared to Neuromod?

Yes, Neuromod has gone a bit quiet over the last couple of months but at the same time has definitely interacted with the community more from what I can tell. Shore has done interviews with media outlets but outside of that I am not aware of her other engagements with the community.

Is there a real technical reason that people believe that one device will be more successful than the other? Both are working under the same concepts.

This is not me knocking Shore or anyone. I hope her stuff also works. It just feels that people keep putting in hope for future devices more than what's right around the corner.

It's an honest question.

 

[GlennS]

If it worked that good, they would have already started selling it.

This is speculation is simply a function of impatience. You're talking delays in the range of weeks or a few months here, not years. There are lots of other explanations.

And also if they have such good testimonials, why not give this device to some severe cases here and let them test it?

Legally that's only possible for those here who live in Ireland is it not? Plus, the world does not revolve around the wants and needs of Tinnitus Talk forum members, as much as we'd like to think otherwise. I didn't even know this group existed until recently. We represent a loud but statistically insignificant number of the total tinnitus sufferers.

 

[GlennS]

I'm giving serious consideration to murdering myself

Seriously, man, you need psychological counseling more than Neuromod right now if you're in that sort of headspace. If you're this desperate you're not capable of conducting a rational discussion. As sympathetic as I may be to your plight and those like you, the worst thing people in your situation could do is heckle/accuse/harass entities like Neuromod. It's totally counter-productive.

 

[Bam]

Why does there seem to be more trust in the stuff happening in Michigan when compared to Neuromod?

Yes, Neuromod has gone a bit quiet over the last couple of months but at the same time has definitely interacted with the community more from what I can tell. Shore has done interviews with media outlets but outside of that I am not aware of her other engagements with the community.

Is there a real technical reason that people believe that one device will be more successful than the other? Both are working under the same concepts.

This is not me knocking Shore or anyone. I hope her stuff also works. It just feels that people keep putting in hope for future devices more than what's right around the corner.

It's an honest question.

I think it's because Shore, who appears to be quite the Iron Lady, seems so unfazed or simply will not comment on tongue stimulations effects or Neuromod. I'm sure hundreds of us have reached out to her and have been met with a wall of silence as she trundles on with her hamster tests, confident in the knowledge that however long she spends electro shocking rodents, she will still be the first to cure tinnitus.

It's also the fact that she was confident enough to alert the mainstream media that she's about to crack this shit. Why can't Neuromod express some confidence outside of the close knit tinnitus community? Why so cagey? Why the shit testimonials if they have good trial results? None of it looks good.

Shore has got this. I'm sure of that. Neuromod I think haven't quite cracked the timing or the stimulation, or something isn't quite right but they have to release before the yanks do or 10 years of work earns them nothing.

 

[Jack Straw]

Why do you quote @kelpiemsp? He wasn't treated with the Neuromod method.

And in Clare B's case it is not sure if the treatment helped. She also said this. Her tinnitus could have gone away naturally even if there had been no treatment.

Let's not take these anecdotes as proof of efficacy of Neuromod's treatment.

The reason I bring up @kelpiemsp is because one of the head people from his device now works for Neuromod. The devices are very similar.

And it is actually a proven fact that bimodal stimulation effects tinnitus. The efficiency of it varies from person to person, but it does work.

 

[GamesB2]

Words

Fantastical faith in a mythical silver bullet from far in the future, entering to a media outlets and users alike fawning over how amazing this cure and creators are as opposed to the (somewhat) rapidly approaching realised version of this coming at us with a very lackluster fanfare and near radio silence?

I'm bored at work.

 

[linearb]

Why does there seem to be more trust in the stuff happening in Michigan when compared to Neuromod?

My take:

University of Michigan is a research institution interested in generating good, interesting data to be published in well-reviewed articles which end up getting cited by many others. Productization is vastly a secondary concern -- this is a detriment to patients in terms of timing but means the data being generated is implicitly less biased.

Neuromod is a heavily venture capital backed company burning up their runway who basically have to get something on the market ASAP or else the lights go out and they crash and burn like 95% of startups. They claim to have performed a large, convincing study -- and I have no reason to disbelieve them -- but so far this has not been published anywhere.

Basically, University of Michigan seems more transparency oriented (published all their protocols and have even worked a bit in email with those of us attempting to DIY their stuff) whereas Neuromod seems a lot more flash-and-cash oriented.

I don't have any particular mistrust of Neuromod, but like every other bit of vaporware out there -- I'll believe it's a thing when it is.