Lenire — Bimodal Stimulation Treatment by Neuromod

[Lucifer]

There are still Dr. Shore and Minnesota devices to be released and I hope these two are more successful than Lenire.

If these devices end up not working for the majority of us, by the time these devices come out FX-322 may be already released into the market. It's up to you whether you want to take a drug or use these devices to get rid of your tinnitus.

 

[xyz]

No, it did not fail.

There was a first-generation product which appears to be underwhelming based on anecdotes posted on a forum with a heavy selection bias. This product is likely to be improved, and at least two further products are in the pipeline, backed by serious research institutions and commercial interest.

Once the Shore and Minnesota devices have been released and a few years have passed and broad patient reports like the one that PeterPan is preparing (and not just random anecdotes in a thread) have shown that the devices aren't any better than placebo and there are no further healing stories like @kelpiemsp's... then we can conclude that bimodal stimulation has failed. At this point, writing off the entire product category as a "failure" because of a weak launch is just silly, sorry.

Yes, there are some for which Lenire worked. Maybe the patient report identifies a subgroup of tinnitus sufferers for which it worked. This would also be a step forward. Then one could clearly state: Use it when tinnitus is neck / TMJ related, but not if it's noise induced, ototoxic med, ...

 

[Jazzer]

No, it did not fail.

There was a first-generation product which appears to be underwhelming based on anecdotes posted on a forum with a heavy selection bias. This product is likely to be improved, and at least two further products are in the pipeline, backed by serious research institutions and commercial interest.

Once the Shore and Minnesota devices have been released and a few years have passed and broad patient reports like the one that PeterPan is preparing (and not just random anecdotes in a thread) have shown that the devices aren't any better than placebo and there are no further healing stories like @kelpiemsp's... then we can conclude that bimodal stimulation has failed. At this point, writing off the entire product category as a "failure" because of a weak launch is just silly, sorry.

If 200 people visit a restaurant and only one of them gave a good review, I would be totally disinterested.

 

[Tybs]

Yes, there are some for which Lenire worked. Maybe the patient report identifies a subgroup of tinnitus sufferers for which it worked. This would also be a step forward. Then one could clearly state: Use it when tinnitus is neck / TMJ related, but not if it's noise induced, ototoxic med, ...

This is what I'm most curious about. Most articles I read talk about tinnitus like a single disease, where a cure should either work or fail.

Thing is, this is not a disease: Tinnitus is one symptom of many possible conditions that may or may not have anything to do with each other. Find and treat the cause, and stop focusing on the symptom itself so much... breakthroughs will only occur once proper subgroups are defined and taken care of separately.

Despite the results, I honestly hope that Lenire build a solid database for cases with a known cause, that a few proper conclusions can be drawn out of it, and that they share this data. If that happens, then we already have a good next step towards working treatments.

 

[threefirefour]

If 200 people visit a restaurant and only one of them gave a good review, I would be totally disinterested.

 

[Bartoli]

Despite the results, I honestly hope that Lenire build a solid database for cases with a known cause, that a few proper conclusions can be drawn out of it, and that they share this data. If that happens, then we already have a good next step towards working treatments.

Isn't it their duty to figure that out beforehand? Guess they were strapped for cash.

 

[MadsWithT]

Despite the results, I honestly hope that Lenire build a solid database for cases with a known cause, that a few proper conclusions can be drawn out of it, and that they share this data. If that happens, then we already have a good next step towards working treatments.

Sorry to disappoint you. Neuromod is doing very little apart from selling gadgets and building a solid bank account. One of the many red flags I noticed was their absolute lack of interest in my etiology. I dismissed that, and a range of other signs that said "stay the f away" from this company. Confirmation bias however, is a strong bias. Anyhow, bi-modal neuromodulation is many years away. Lenire, cacophonic neuromodulation, at best, does nothing towards treating tinnitus. Can not really see that the firm will be around for much longer. They have failed to build anything with their user base. They are not even trying to record their users experience. Lenire is worse than a flop or a scam - it is inherently dangerous and should never been allowed to enter market.

 

[ASilverLight]

Sorry to disappoint you. Neuromod is doing very little apart from selling gadgets and building a solid bank account. One of the many red flags I noticed was their absolute lack of interest in my etiology. I dismissed that, and a range of other signs that said "stay the f away" from this company. Confirmation bias however, is a strong bias. Anyhow, bi-modal neuromodulation is many years away. Lenire, cacophonic neuromodulation, at best, does nothing towards treating tinnitus. Can not really see that the firm will be around for much longer. They have failed to build anything with their user base. They are not even trying to record their users experience. Lenire is worse than a flop or a scam - it is inherently dangerous and should never been allowed to enter market.

I actually looked at their site. One thing that really turned me away was one of the ''Is Lenire for me?'' questions, which was ''I hear different types of sounds, will the device work for me?''

Answer: Each person's experience of tinnitus can be different. If you hear different sounds consult your clinician to find out if Lenire® is recommended for you.

I'm someone with many sounds and I find the seeming lack of knowledge at all to be worrisome. Shouldn't they know whether their device could be useful instead of someone who isn't involved with the company at all?

I am however interested in all these modulation treatments as I feel the link to the brain is too often ignored. Maybe Lenire isn't what we were hoping for, but it is making a (slight) difference for some, which means it's at least doing something. Unfortunately research comes with trial and error, and we need to realise that most treatments for tinnitus are very new - seldom is a working treatment found right away.

It may not be a success, but other companies etc can learn from the mistakes made with Lenire. That is important to note, too.

Then again, I've recently become very interested in Thanos Tzounopoulos and I'm hoping to hear more from him in the near future.

 

[Jazzer]

Sorry to disappoint you. Neuromod is doing very little apart from selling gadgets and building a solid bank account. One of the many red flags I noticed was their absolute lack of interest in my etiology. I dismissed that, and a range of other signs that said "stay the f away" from this company. Confirmation bias however, is a strong bias. Anyhow, bi-modal neuromodulation is many years away. Lenire, cacophonic neuromodulation, at best, does nothing towards treating tinnitus. Can not really see that the firm will be around for much longer. They have failed to build anything with their user base. They are not even trying to record their users experience. Lenire is worse than a flop or a scam - it is inherently dangerous and should never been allowed to enter market.

My feelings exactly.

When I spoke to the woman presenting it at the Birmingham Expo a couple of years back I asked her why the bi-modal modulation was more likely to reduce the noise of tinnitus, than to exacerbate it further, she had no answer for me.
I had no faith in it from day one.

 

[HootOwl]

My feelings exactly.

When I spoke to the woman presenting it at the Birmingham Expo a couple of years back I asked her why the bi-modal modulation was more likely to reduce the noise of tinnitus, than to exacerbate it further, she had no answer for me.
I had no faith in it from day one.

That's a tad concerning if their representative couldn't answer that question... from the little I've read of Susan Shore's research it was my understanding that she deduced that it was where the electrical impulse and sound simulation were timed which determined either an increase, or decrease, in fusiform activity, and subsequent tinnitus signal.

I believe she increased tinnitus in some rodents with this method so she could confirm her suspicions, and fine tune the timings.

I wonder why Lenire wouldn't train their reps with that knowledge. It's a very practical question that isn't difficult to answer. But it doesn't lend well to their image...

 

[Jazzer]

View attachment 38450

Great photo TFF.
How did you know I love cherries buddy.
You know - you're not such a bad guy after all xx

 

[GlennS]

They are not even trying to record their users experience.

What makes you think they aren't gathering data? What they aren't doing is revealing any of it to the public, which is what's fishy. The only data we have to go by is based on the trials (conspicuously still not peer-reviewed) and even there they took down the leaked Hubert Lim Vimeo video which had the most substantive data in it.

 

[MadsWithT]

What makes you think they aren't gathering data? What they aren't doing is revealing any of it to the public, which is what's fishy. The only data we have to go by is based on the trials (conspicuously still not peer-reviewed) and even there they took down the leaked Hubert Lim Vimeo video which had the most substantive data in it.

They are gathering a lot of TFI data but those results are highly manicured as dropouts are not registered - you get biased data. For some reason I think Neuromod believes it has found insight that is so valuable that it is worth protecting, at all costs, so they act all vague. Or, for some reason, staff is kept in the blind, showing such ignorance as @Jazzer experienced.

The Lenire trials are probably highly manipulated looking at actual user experience. So whatever data is collected, the purpose is to show investors how successful the gadget is, not for finding and correct any failures. Still there might be a lot to this scheme I am unaware of. It might be so that Neuromod are using their customers as lab rodents, I find the whole plot highly cynical.

The oat of Hippocrates is prominently displayed at the lobby at the Hermitage. I remember that gave me solace and quelled all the misgivings I'd accumulated interacting with Neuromod. Now, listening to the horrible tinnitus I got from using Lenire just a short while, I am sure others also got badly hurt. All these consequences are on Ross O'Neill.

 

[GlennS]

listening to the horrible tinnitus I got from using Lenire just a short while, I am sure others also got badly hurt. All these consequences are on Ross O'Neill.

Has that not faded?

Would be interested a roll-call of those with effectively permanent disimprovement.

 

[UKBloke]

They are gathering a lot of TFI data but those results are highly manicured as dropouts are not registered

Hey Mads,

Ross O'Neill mentioned in the last interview he gave Tinnitus Talk that the Irish trading standards (I think that was the organisation) obligate Neuromod to collect and send Lenire performance data to them in order that they can essentially show that the device does what it says on the tin. In the same breath, however, O'Neill went on to say that GDPR issues mean Neuromod are unable to release this data to the general public.

I felt that statement was a bit whiffy because a breach in GDPR would essentially only occur if data released could be tied to an individual. And so it begs the really simple question, Why not parse the personal data out? If Ross O'Neill does give us a third interview, and to be honest, at this time I think he'd be a very brave man to do so, I feel this is a point we need to press him on.

 

[Jazzer]

Yet another gadget
'Bites the Dust.'
No surprise to me.

 

[BigNick]

As someone who used Lenire for several months I take the same view as @hans799.

Lenire can 'affect' tinnitus but this could be good, bad or both.

I've gone from loving Lenire to hating it and am now somewhere in the middle.

I can't deny it took the worst element of my tinnitus and knocked it clean out. However, there's another element / sound that got worse. This kind of resolved as I stopped using Lenire for six weeks. Despite the bit of improvement I got I still feel bitterly disappointed by the whole experience as I'm still left with horrible tinnitus.

They said in their publication that the treatment 'showed promise' in the treatment of tinnitus and I think that's as far as they got i.e promise / potential and nowhere near the finished article.

As regards to Neuromod as a company I have a very low opinion of them in terms of their treatment of me personally. As others have mentioned the appointments were very rushed and I even got a call asking me to give a testimonial after I told them I was very disappointed at my final appointment. Also, their refusal to update settings online is appalling, it's hugely expensive to travel back and forth to Dublin for something so trivial.

With regards to Dr. Shore and co, I think the fact that she's been working on her treatment for several years and appears to be highly studious and meticulous in her approach to bimodal stimulation is reassuring.

I remain optimistic she might be able to help us due to my experience that bi modal stimulation does 'something' to tinnitus, but we need a damn site better product than Lenire.

I know from bitter experience what misery tinnitus can cause and if you're reading this and are suffering I send you my love and hugs and I personally believe we will get an effective treatment in the not too distant future and think how ecstatic you'll be when that day comes.

BN X

 

[Alberte]

Thank you very much Big Nick!

I live in Canada and I was thinking going to Dublin to try Lenire.
I prefer to wait for Dr Shore's device.

Thank you again!
Alberte

 

[alanisnotadj]

As someone who used Lenire for several months I take the same view as @hans799.
Also, their refusal to update settings online is appalling, it's hugely expensive to travel back and forth to Dublin for something so trivial.
BN X

I just received the following email from Neuromod:

Dear **********,
We are actually in the process of setting up remote appointments so that you can talk to an Audiologist and we will organise for your device to be sent to our clinic and then sent back to you. We are just finalising the process at the moment so I will add you my list and as soon as we are set up, we can schedule and appointment. We hope to have this service up and running very soon.

 

[pinklights98]

I just received the following email from Neuromod:

Dear **********,
We are actually in the process of setting up remote appointments so that you can talk to an Audiologist and we will organise for your device to be sent to our clinic and then sent back to you. We are just finalising the process at the moment so I will add you my list and as soon as we are set up, we can schedule and appointment. We hope to have this service up and running very soon.

Sadly, this does not apply for US users.

 

[hans799]

I just received the following email from Neuromod:

Dear **********,
We are actually in the process of setting up remote appointments so that you can talk to an Audiologist and we will organise for your device to be sent to our clinic and then sent back to you. We are just finalising the process at the moment so I will add you my list and as soon as we are set up, we can schedule and appointment. We hope to have this service up and running very soon.

Ah cool. Remote software updates would be even better but shipping the device to/from Ireland is already a lot cheaper than shipping our beautiful bodies.

Despite the sour mood the thread has again taken, I still have faith in Neuromod, because they serve a great god: venture capital. Even with the most optimistic estimates, they couldn't have had more than a few hundred patients. And with roughly 3000 euros a pop, that's completely insufficient to break even, not to mention returning a sizable and growing profit. And you won't do that unless you scale, and scaling won't happen until good-looking testimonies and studies and data start rolling in.

Contrary to popular belief, most people aren't stupid and won't fork over 3000 euros without being really persuaded, especially if a product is already surrounded by skepticism. So I'm 100% confident that Lenire and its marketing and its data will improve. Not because of any misguided faith in the goodness of humans. I have my faith in the iron logic of the capitalist marketplace.

tl;dr: Lenire will improve because Neuromod's investors will force it to do to avoid losing their invested millions.

 

[GregCA]

tl;dr: Lenire will improve because Neuromod's investors will force it to do to avoid losing their invested millions.

I'm afraid it doesn't work that way (for VC investments).

In all VC funded companies, investors want to avoid losing their invested millions, yet a very large majority of VC funded companies do fail.

This is by design of the risk/reward profile and investment strategy (target many companies with the hope that one or two unicorns will come out of them).

 

[DaveFromChicago]

To hans799:

Although I truly wish that it were not so, GregCA is wholly correct in this instance.
Your logic-of-market-capitalism argument is precisely what I applied when I spent $5,269.00
on Desyncra from 12/16/17 to 08/01/18.
Like yourself, I felt that it had to have some effectiveness given all of the product manufacture, promotion, FDA approval, data presentation, etc.

After this dutiful application for 6 hours every day for 36 weeks, it turned out to be as useless as shining a flashlight on my head would have been.

When I was finished the audiologist admitted that only 8 others (in the third largest city in the US) had also paid for this.

Someone here recently mentioned that Desyncra is in fact no longer offered in the US.
Their website later offered this seemingly, laughably ridiculous viewfinder/headset that was supposed to visually eliminate migraines (and I can only imagine what that would have cost).
I recall that during Stalingrad the German soldier would frequently say "The Fuhrer must know what he is doing." Unfortunately, this was also the rationale that led me to try Desyncra (and why so many VC funded companies fail, especially in the Medical Field).

The most telling, fundamental characteristic of market capitalism still resides in the necessity of providing a product that actually, with no rationalizations or equivocations, does what the seller says it will do.

 

[Heinrich_S7]

I think at this point people would be better off waiting for the Hough Ear Institute's pill or FX-322. I think it's clear Lenire is just vastly underperforming compared to the seller's claims. Companies will always exaggerate results in order to sell you a product, the fact that it's May 2020 and Neuromod has been mum is not in any way good business practice. Long silence is
never a good sign.

 

[Mentos]

Lenire's default PS1 stimulation is just that: saturation. It broadcasts wideband noise into your ears, and a lot of beeps, and the electric stimulation on the tongue is timed precisely to match the beeps. It dumps a ton of synchronized noise through two separate channels into the dorsal cochlear nucleus, telling it the input is coming in all right, yes, bucko? So there's no need for you to helpfully replace its absence with a phantom noise you generate, right? And if the DCN gets the message, it slowly starts toning its own bullshit down.

(How the PS1 stimulation works is from Neuromod's own description of their trial arms. How it affects the DCN is just my own speculation.)

Did Neuromod guys ever mention they target DCN in their treatment or is it just your speculation? I thought it's Shore who base her treatment on the DCN theory.

 

[UHPTS]

I just received the following email from Neuromod:

Dear **********,
We are actually in the process of setting up remote appointments so that you can talk to an Audiologist and we will organise for your device to be sent to our clinic and then sent back to you. We are just finalising the process at the moment so I will add you my list and as soon as we are set up, we can schedule and appointment. We hope to have this service up and running very soon.

Was this sent from Hannover or Dublin?

 

[alanisnotadj]

Was this sent from Hannover or Dublin?

Dublin.

 

[ruud1boy]

Also, their refusal to update settings online is appalling, it's hugely expensive to travel back and forth to Dublin for something so trivial.

You can't really pull them on that in all fairness - they explicitly stated from day one that they didn't want people travelling from overseas.

Dublin.

So they're updating settings by just sending the device back to Ireland now?

 

[alanisnotadj]

So they're updating settings by just sending the device back to Ireland now?

It looks like it.

 

[GlennS]

It looks like it.

Which means treatment winds up being interrupted. Not ideal either.