MuteButton

[Bam]

I'm starting to feel more anxious for the bloody device to show up and then all the mind wanking here stopping than to see if it's the real thing.

Once it's released the madness on here will really begin. Neuromod are playing with fire, releasing a device that works for some and not for others is unleashing a divisive demon of epic proportions. They are basically selling carnage. And I suspect that has perhaps dawned on Ross and the team. If not it's going to smack them in the face hard. Investors beware.

 

[Paulmanlike]

If we're talking about Shore here and how it compares to Neuromod I would say I am by far more attracted to Neuromod.

Reasons for this:

- More research behind it that's been tested on humans. 500+ patients tested so far with it going through a peer review process. Shore has tested 20 patients. The current trial has 100.
- More brains on scientific advisory board that are prominent in tinnitus research field.
- It's coming a lot sooner.
- I'm from U.K. so with it being developed in Ireland I can get my paws on it quicker.
- Shore's so far has only determined this on somatic tinnitus. I've never been able to modulate mine apart from yawning and I would think most people aren't able to modulate their tinnitus. I never have even when mine was severe.
- Shore's work is incredibly slow. There is a video on YouTube of her talking about bimodal neuromodulation from 5 years ago! 5 years later, 20 people tested.
- Neuromod is a business and will obviously be driven to get a product that works out there ASAP.

And of course my Hubert works for them...

If I could have one wish it would be for Susan Shore and Josef Rauschecker to join the scientific advisory board for Neuromod. With that, Neuromod will be the best tinnitus treatment product 2019 can produce.

 

[Bam]

If I could have one wish it would be for Susan Shore and Josef Rauschecker to join the scientific advisory board for Neuromod. With that, Neuromod will be the best tinnitus treatment product 2019 can produce.

I like your salient points @Paulmanlike.

But it doesn't solve the testimonials problem. That said let's imagine for the time being that the people with better results just didn't want to be filmed and jinx their incredible good fortune in being cured for free in a clinical trial.

Also from those testimonials we can deduce that the less hearing damage (perhaps the younger you are) the better shot you have at this working as a brain fix.

 

[linearb]

Neuromod are playing with fire, releasing a device that works for some and not for others is unleashing a divisive demon of epic proportions. They are basically selling carnage. And I suspect that has perhaps dawned on Ross and the team. If not it's going to smack them in the face hard. Investors beware.

I really think you're waaaaaay out in left field with this one. Everyone I've spoken to at UMich, as well as Neuromod's own literature, indicate that these technologies help some percentage of tinnitus sufferers. So literally no one involved thinks it's going to help everyone, and this would be clear to investors from Neuromod's own data (which sounds a bit more positive in terms of response rate than UMich, but still nowhere near 100%).

Think of something like testicular cancer. In some cases it's simple, hasn't metastasized, and can be removed and the person returns to an otherwise normal life. In other cases, it's more advanced and the person dies despite all medical interventions.

The idea that a company is "playing with fire" by releasing a medical treatment which works for less than 100% of people with the condition just seems unbalanced to me. In fact, that describes nearly every major medical advance ever made.

 

[gorzakus]

Shore's so far has only determined this on somatic tinnitus. I've never been able to modulate mine apart from yawning and I would think most people aren't able to modulate their tinnitus. I never have even when mine was severe.

More than 80 percent can modulate their tinnitus with their jaw.

There is a thread about this on here:

https://www.tinnitustalk.com/threads/poll-changes-in-tinnitus-by-jaw-movement.8874/

 

[Paulmanlike]

The testimonials were all positive, they just lacked depth. Sure, some came across as looking like a habituation device but it is not a habituation device. If somebody with severe tinnitus went to mild, only-hear-it-in-a-quiet-room-tinnitus then that's a massive leap forward in medical technology for a condition that has proven so difficult to treat.

Personally I am going to be weighing in the chances of it eliminating my tinnitus to cost... then move onto the chances of it reducing my tinnitus to cost... And of course I will be hanging here to see testimonials of people here before I buy it. I have no intention of wasting more money on tinnitus treatments and can wait a bit. Just know how devastating it will be if it doesn't work. But I'm sort of at a place now where I expect to die with tinnitus and that's not because I've lost hope or anything, it's more of an acceptance thing. So if they prove me wrong, I will be pleasantly surprised.

 

[EDDTEKK]

Let's pray this shit does something to us.

 

[GlennS]

But it doesn't solve the testimonials problem.

Then be a (hopefully polite) skeptic. I don't think anyone here is 100% sold anyway. But you seemed to go overboard in outright bashing Neuromod and elevating Susan Shore up to demigod status.

On the internet everyone wants to slot into fan/hater buckets and join team this or that. But I am not seeing evidence there's a horse-race between Susan Shore and Neuromod as some have claimed. It's not even just a two-way thing as there's Minnesota as well which has dropped off from active discussion.

Also, I would guess ALL of the active posters on this forum are in severe emotional distress due to their tinnitus. I certainly am. It might be tempting to use this forum as the equivalent of a pillow to scream into, but this thread shouldn't be one of them, considering that Neuromod is supposedly following along and responding to our requests to some extent.

This whole pillow-screaming thing is also why I don't join in the ATA or celebrity hater brigades. I can see it for what it is.

 

[Ed209]

I like your salient points @Paulmanlike.

But it doesn't solve the testimonials problem. That said let's imagine for the time being that the people with better results just didn't want to be filmed and jinx their incredible good fortune in being cured for free in a clinical trial.

Also from those testimonials we can deduce that the less hearing damage (perhaps the younger you are) the better shot you have at this working as a brain fix.

Neuromod have never claimed this cures tinnitus though? Based on your posts, it appears you're expecting to see testimonials that indicate it has cured them.

Ross said that two-thirds of the people in the trial experienced a clinically significant improvement. He didn't say everyone reported that they could no longer hear anything. Based on how over-the-top this thread is getting it wouldn't surprise me if they released those other testimonials on YouTube to balance everyone's expectations on here somewhat. There were seven new videos posted and some members here lost their shit over them, but they didn't tell us anything that Ross hasn't already explained.

Let's break this down:

He said two-thirds showed a clinically significant improvement. That's around 66% and this could range from a very mild reduction to maybe a much greater reduction. However, any perceived reduction will be considered clinically significant.

That leaves approximately 34% with no effect. Did I miss the part where he said it was shown to be 100% successful and with dramatic reductions across the board?

Personally, I think they are just being honest and forthcoming. Maybe too honest for their own good, but to me, it shows a lot more integrity than seeing a company running a load of cheesy over-the-top paid actor type videos. Either way, they have contributed to science with one of the largest studies ever conducted. I'd love to have seen a placebo control, but you know what, they had some of the best tinnitus scientists in the world working on this and if they couldn't see a way of implementing one, then who are we to argue? They damn sure know more than we do about this stuff, and their protocols were published in the British Medical Journal, which is very prestigious and far from a pseudoscience rag.

We will learn a lot more from the real world results once it's released. Until then, there's nothing any of us can say that's of any merit regarding its efficacy. It's all just speculation.

 

[kelpiemsp]

Just being honest but when I literally begged her for help her response couldn't have been more ruthlessly cold.

When did you get to talk to Susan Shore?

 

[Paulmanlike]

@Ed209

It's also important to remember Ross O'Neill was only discussing the data from the TENT-A1 study. Since then, a 192 patient TENT-A2 study is in the process of getting conducted and the data is coming in with this having 9 arms - opposed to the 3 arms in the TENT-A1.

It is of course speculation but, hopefully, they've not only confirmed its efficacy but also developed a more efficacious approach that increases the patient response and learnt something new such as those who are unlikely to respond. They have a product launching this year that will no doubt be costly, them having to sell it on something a "well it might or might not work" approach is not going to convince the majority to capture the potential of the tinnitus market.

They've already said to me by email that the partners will determine whether this treatment is right for you so I would speculate they have some idea on who it may work best for.

We definitely need another Q&A, so many unanswered questions and speculation is running high. I have a handful of questions I would like to get cleared up. I'm sure others have too.

 

[GlennS]

when I literally begged her for help her response couldn't have been more ruthlessly cold.

And yet despite this your conclusion is "Susan Shore's got this!"

I get it. You're looking at this as a binary decision where you must pledge all your support for one party and badmouth the other. But it's just not that simple.

 

[Aklara319]

Then be a (hopefully polite) skeptic. I don't think anyone here is 100% sold anyway. But you seemed to go overboard in outright bashing Neuromod and elevating Susan Shore up to demigod status.

On the internet everyone wants to slot into fan/hater buckets and join team this or that. But I am not seeing evidence there's a horse-race between Susan Shore and Neuromod as some have claimed. It's not even just a two-way thing as there's Minnesota as well which has dropped off from active discussion.

Also, I would guess ALL of the active posters on this forum are in severe emotional distress due to their tinnitus. I certainly am. It might be tempting to use this forum as the equivalent of a pillow to scream into, but this thread shouldn't be one of them, considering that Neuromod is supposedly following along and responding to our requests to some extent.

This whole pillow-screaming thing is also why I don't join in the ATA or celebrity hater brigades. I can see it for what it is.

Agreed. In other threads, these same people complain that researchers and clinicians don't take tinnitus seriously. When academics like Shore, Sedley, Roberts, O'Neill etc. dedicate their careers to mapping out a model for tinnitus (which is under-appreciated) and focusing on treatment-based research, these same people crack out their whips and demand that they speed up. These people don't owe you anything. And no matter what you write on a forum, that won't change the rigour of their processes.

 

[Markku]

Just a heads up, from now on we're going to let zero off-topic posts or posts that are obviously penned by ill-mannered people into this thread. When we see a new post and if it has nothing to do with Neuromod/their device, or tightly related to the topic, we will delete the post without notice.

All of you can also help us by using the "Report" link below any post to notify us of posts that aren't on-topic.

We also demand civil and constructive behavior. Otherwise you have no place taking part in these discussions. Having severe, debilitating tinnitus is no excuse for arrogant, hateful behavior.

It's incredibly frustrating to be opening this thread only to see content that has absolutely nothing to do with the topic on hand or, worse yet, content that appears almost breaking legal and ethical boundaries, borderline harassing / threatening.

Would some of you act like this if you were talking to a person face to face? I seriously hope not...

Please behave.

 

[Hazel]

Agreed. In other threads, these same people complain that researchers and clinicians don't take tinnitus seriously. When academics like Shore, Sedley, Roberts, O'Neill etc. dedicate their careers to mapping out a model for tinnitus (which is under-appreciated) and focusing on treatment-based research, these same people crack out their whips and demand that they speed up. These people don't owe you anything. And no matter what you write on a forum, that won't change the rigour of their processes.

I could not agree more. This kind of non-constructive commenting is only making researchers less likely to want to work on tinnitus, or if they do they'll be less likely to want to engage with the tinnitus community.

Just a heads up, from now on we're going to let zero off-topic posts or posts that are obviously penned by ill-mannered people into this thread. When we see a new post and if it has nothing to do with Neuromod/their device, or tightly related to the topic, we will delete the post without notice.

All of you can also help us by using the "Report" link below any post to notify us of posts that aren't on-topic.

We also demand civil and constructive behavior. Otherwise you have no place taking part in these discussions. Having severe, debilitating tinnitus is no excuse for arrogant, hateful behavior.

It's incredibly frustrating to be opening this thread only to see content that has absolutely nothing to do with the topic on hand or, worse yet, content that appears almost breaking legal and ethical boundaries, borderline harassing / threatening.

Would some of you act like this if you were talking to a person face to face? I seriously hope not...

Please behave.

I could not have said it any better. Let's all cool down a bit and think about how we should be acting to be taken seriously as the tinnitus community. We want to get things done and help the tinnitus research field progress, not actively hold them back by making pointless accusations.

 

[Aklara319]

The best we can do is wait for the study to come out, rely on users' experiences with the device, and clinicians' advice with respect to our unique symptoms. Speculation doesn't move the needle at all.

Without going off-topic, I had the opportunity to meet with the Canadian branch of the Michigan project. They didn't mention Neuromod, but seemed confident that this modality may help a lot of people! Very optimistic! I hope it works for everyone here.

 

[TimmyC]

I just wanted to post this study that helps back up bimodal neuromodulation.

https://journals.sagepub.com/doi/10.1177/2331216519835080

This is an INVASIVE study, but backs up the breaking down of neural activity in the DCN.

 

[Jack Straw]

I just wanted to post this study that helps back up bimodal neuromodulation.

https://journals.sagepub.com/doi/10.1177/2331216519835080

This is an INVASIVE study, but backs up the breaking down of neural activity in the DCN.

Yet another study showing that bimodal stimulation works.

Not sure why people are still doubting it.

 

[_Patrick_]

Yet another study showing that bimodal stimulation works.

Not sure why people are still doubting it.

People are not doubting it works, they doubt how much it works.

And until we get our hands on such a device, this question will remain unanswered.

 

[Jack Straw]

People are not doubting it works, they doubt how much it works.

And until we get our hands on such a device, this question will remain unanswered.

If you are looking for a cure, you will be upset.

If you are looking for something to reduce your tinnitus to mild, this most likely will be it.

 

[Bam]

If you are looking for a cure, you will be upset.

If you are looking for something to reduce your tinnitus to mild, this most likely will be it.

In my mind - I ain't no scientist given - that makes zero sense Jack. If it can reduce severe to mild, the same mechanism of action you would hope, can reduce it from mild to essentially gone.

If it's doing its job of breaking up misfiring neurons and you keep using it, why would it suddenly stop working?....... It's not like it's gonna get tired and bugger off on holiday.

 

[GregCA]

Yet another study showing that bimodal stimulation works.

...in rats. Many things are known to work with rats and not humans.

Not sure why people are still doubting it.

Because we need data for humans. There's nothing wrong about doubting. Doubting is healthy: one can be hopeful and doubtful. When it comes to bimodal stimulation, it all makes sense (ie there is a logical explanation that stands), which brings hope, but the data should really come in to prove or disprove our model.

What will address doubt is statistically & clinically significant data about humans, which is what a few labs are working on. It'll get there.

 

[Bndsmheowqhe]

...in rats. Many things are known to work with rats and not humans.

Because we need data for humans. There's nothing wrong about doubting. Doubting is healthy: one can be hopeful and doubtful. When it comes to bimodal stimulation, it all makes sense (ie there is a logical explanation that stands), which brings hope, but the data should really come in to prove or disprove our model.

What will address doubt is statistically & clinically significant data about humans, which is what a few labs are working on. It'll get there.

I have more faith in the overall technology than I do in some of the specific players involved in this coming to market. Apparently we're not allowed to criticize them directly on this forum though.

 

[Markku]

Apparently we're not allowed to criticize them directly on this forum though.

You most definitely are allowed to, but I would like to think most here agrees with our staff's take that constant, repeated negativity/criticism is unnecessary at best and highly annoying, only serving to reduce the signal to noise ratio at worst.

From the 70 posts we deleted, about 20 were you repeating your distrust / displeasure in Neuromod. In a period of like two days!

Repeating the same thoughts ad infinitum like a broken record is where we draw the line - however if someone here disagrees with this, please feel free to let me know via a PM. Based on a small sample thus far, people prefer not to read the never ending arguments rooted on lack of available information. At some point one has to accept the reality; there's still some waiting to be done before the device is launched. Once it's out, we all will know. Same goes for the peer review article.

That said, we naturally welcome healthy critique and arguments - and I totally understand the frustration behind the lack of updates, etc.

Peace.

 

[GamesB2]

In my mind - I ain't no scientist given - that makes zero sense Jack. If it can reduce severe to mild, the same mechanism of action you would hope, can reduce it from mild to essentially gone.

If it's doing its job of breaking up misfiring neurons and you keep using it, why would it suddenly stop working?....... It's not like it's gonna get tired and bugger off on holiday.

I've had several thoughts on this, the one I'll settle for as it makes the most direct sense is that tinnitus is still a symptom of other problems, it's a symptom that seems to be able to recruit nearby neurons or whatever into doing its bidding so breaking those apart we've still not solved the actual problem?

So to a point there is tinnitus that is created by whatever started it in the first place, then the rest is just hyperactive neurons trying to get in on the party, the plan is to just break the party up.

Or not, I ain't no scientician.

 

[F-u-T]

...in rats. Many things are known to work with rats and not humans.

The data results Susan Shore released from their 1st human trial show the effectiveness of Bimodal Stimulation over a period of just 28 days. Assuming Neuromod had similar results for their trial, that will be more published data to help prove effectiveness of Bimodal Stimulation.

 

[_Patrick_]

If you are looking for a cure, you will be upset.

If you are looking for something to reduce your tinnitus to mild, this most likely will be it.

Yes, I am looking for a cure, but no, I am not expecting a cure from this device (and never did).

If it can lower my tinnitus, I would be more than happy. I just hope I will not describe this attenuation as a 2% decrease, that's all.

 

[kelpiemsp]

On the internet everyone wants to slot into fan/hater buckets and join team this or that. But I am not seeing evidence there's a horse-race between Susan Shore and Neuromod as some have claimed. It's not even just a two-way thing as there's Minnesota as well which has dropped off from active discussion.

Hubert Lim is from Minnesota and joined Neuromod, so there is a belief that the research from Minnesota is moving to Neuromod.

FWIW, I mentioned this in a different post, but Minnesota has been recruiting PhDs for its lab. Recently a friend of mine was contacted with the following recruitment email (he has tinnitus and knew I was part of the trial)

"the Neuromodulation Research Center at the UofM is opening three postdoctoral positions. We're looking for control engineers interested in applying their expertise in control engineering, signal processing, and data analysis to the treatment of brain disorders and development of closed-loop deep brain stimulation therapies"....

Take that for what it is worth... but this is very much an active space.

 

[linearb]

...in rats. Many things are known to work with rats and not humans.

Respectfully, sir, it worked on me and I am not a rat.

There are no rats in Alberta.
https://www.adultswim.com/videos/jo...e-rat-wars-of-alberta-canada-1950-present-day

 

[Paulmanlike]

In my mind - I ain't no scientist given - that makes zero sense Jack. If it can reduce severe to mild, the same mechanism of action you would hope, can reduce it from mild to essentially gone.

If it's doing its job of breaking up misfiring neurons and you keep using it, why would it suddenly stop working?....... It's not like it's gonna get tired and bugger off on holiday.

You make a good point here Bam.

If those who have higher tinnitus volume report a decrease in sound/actual volume, then what is there to say that somebody with a lower initial tinnitus volume that responds would actually see their tinnitus disappear or go to barely noticeable?

Also, what if you keep using the device for longer periods of time?

They say the recommended usage is 30-60 mins a day for 12 weeks but how did they come to that conclusion? Why not longer? They said the greatest improvements were seen in the first 6 weeks and continued to improve after. I guess they can only comment on the data they've got and they avoided any of their opinions going out on the Q&A. There's a Q&A with Richard Tyler soon anywhere who's also on board with Neuromod, hopefully he can clear things up and give his opinion - without directly mentioning Neuromod. I guess Neuromod were only willing to discuss the facts from the trials without going further into what they've thought.

@David,
As you were at ARO 2019 can you talk about anything with regards to their presentations? I know it may be commercially sensitive in some parts but did you learn anything new from them?