What are you referring to? Isn't Hubert Lim on their team? In what way could that information harm Neuromod? Does anyone have info about what was said in that presentation?
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
I work daily with GDPR. It is far more complex than what you claim. And I don't think that's an excuse on Neuromod's side.
The company I work for is a multinational and make billions, so we have great lawyers. But they are going crazy with GDPR because it's such a pain in the ass, even for them on their level. The orders are to avoid it as much as possible, i.e. no personal data.
So I do believe a little company such as Neuromod doesn't want to get involved with personal data and is careful about GDPR.
For your own knowledge: British Airways have been fined $230M for not respecting GDPR.
Google have been fined $50M.
These are big companies with top-tier lawyers. And they still messed up.
MemberI still don't buy it. We're already hearing second hand that people who are asking Neuromod how patients are doing are being told it's matching their quoted figures. If they can't say anything, why are they going that far?
I mean, even if you go by personal testimonials on the internet, Lenire's claimed success and anecdotal success rates are roughly the same...
If you read back in the thread there are almost no reports from anyone other than from Tinnitus Talk, and those are not measuring up, IMHO, hence the hand-wringing we're doing.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
Agreed.
I think people who aren't from the EU / are not familiar with GDPR are perhaps not aware how much stricter data laws are over here than in the rest of the world!
I am following the feedback from Lenire users. Is it me or are the testimonials VERY far from the numbers Neuromod claimed from the trials? I get it's not precise but still.
In other words, I don't even see 50% of people having improvement from Lenire.
Or am I missing something?
In other words, I don't even see 50% of people having improvement from Lenire.
Or am I missing something?
Oddly enough, half of the good reviews aren't even on the User Experiences thread. They are deep into this thread.
El BUZZ
Member
No you are not missing anything. A very clear majority of those posting in the Lenire User Experiences thread found that Lenire had little or no impact on their tinnitus after three months of using it. These are the reviews to be relied on - by people who paid for and invested time in the product.
I mean it's ridiculous to say it doesn't work when the evidence heavily says it does. It's probably just not as effective as we thought it would be. I was talking to a Lenire user on Reddit who said that it's good and works well, but don't expect any miracles unless you have mild tinnitus. Maybe most people hugging want to save their money for a better device like Susan Shore or UMinn.
My point is that it shouldn't be a regulatory issue to make a generic official statement how people are doing, a very simple aggregate, without running afoul of regulators, and this is more or less what they're already doing anyway, verbally, when asked one by one by patients moving through the clinic. If they were so anal retentive about following the regulations to the letter they wouldn't allow their staff to say anything, period.
None of us needs to know anything more granular than a simple ratio of results so far, improved, no change, and "disimproved". And I think Neuromod knows that's all we're looking for, but them not wanting to officially disclose this information suggests the numbers aren't really as positive as they're expressing to patients casually, and they don't want to have to deal with the questions that would result.
ajc
Member
- Feb 6, 2018
- 1,170
- Tinnitus Since
- 11/2002; spike 2009; worse 2017-18
- Cause of Tinnitus
- Loud music - noise damage
This just proves that all the huggers do not have severe enough tinnitus.
Anyone who has severe suicidal tinnitus would be trying this for sure.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
To ajc:
This is not about anyone's motivation based on severity but on the empirical user results
we have received.
As a hugger, yesterday my tinnitus literally incapacitated me for the entire day.
I would pay twice Lenire's going rate if I could be reasonably confident that it would reduce my tinnitus by just half.
I very much hope that we receive many further reports regarding Lenire's real effectiveness.
After my colossally disappointing $5,269.00 experience with Desyncra, I must and wish for real evidence that there will be some demonstrable, non-placeboized improvement from Lenire.
This is not about anyone's motivation based on severity but on the empirical user results
we have received.
As a hugger, yesterday my tinnitus literally incapacitated me for the entire day.
I would pay twice Lenire's going rate if I could be reasonably confident that it would reduce my tinnitus by just half.
I very much hope that we receive many further reports regarding Lenire's real effectiveness.
After my colossally disappointing $5,269.00 experience with Desyncra, I must and wish for real evidence that there will be some demonstrable, non-placeboized improvement from Lenire.
Heading out to Ireland tomorrow for my appointment this week. I took a few notes of some of the questions asked in this thread and will ask at my appointment if there is time. I will be back on next week sometime and will let you all know how things go.
One thing I do question is that how many people that aren't having luck have somatic tinnitus or not. We know that Susan Shore's device, at this time, is only for somatic tinnitus, which they say is around 75% of all sufferers. I will ask anyway and report back.
As far as the Hug/Like "survey" it has been so distressing that even if it helps a little it is worth it. I am flying over from the US so it is going to cost me a ton, but a little ray of hope is worth it to me.
One thing I do question is that how many people that aren't having luck have somatic tinnitus or not. We know that Susan Shore's device, at this time, is only for somatic tinnitus, which they say is around 75% of all sufferers. I will ask anyway and report back.
As far as the Hug/Like "survey" it has been so distressing that even if it helps a little it is worth it. I am flying over from the US so it is going to cost me a ton, but a little ray of hope is worth it to me.
The thing with reduced by half is that it looks like that is no easy feat. Nothing on the market can do that, except MAYBE this.
The overall data we have suggests Lenire is working, but not on a "reduced by half" level for most of the users. At least not yet, but it does show to be improving the tinnitus for most of them. I think there is a disappointment in effectiveness, as people seem to expected reducing it by half would be the norm. They never made that claim. Their claim was always "clinically significant improvement based" which is pretty much just enough to prove the device is itself is reducing tinnitus severity by someway or another. Exactly how it helps seems to vary, but it looks like it is so far. This could simply be more "good days" per week or the sound changes to be more tolerable, not even actual baseline reduction in volume (though this can happen too).
I would definitely try it because the odds of it permanently worsening seem very slim to none based off the treatment alone. Most of the users who got worse tinnitus returned to baseline as Neuromod claims shortly after. In fact, it seems more of them started seeing some results after that. Just look in these threads, not every user is posting regularly on the Lenire User Experiences thread. What we have so far actually suggests the data is in line with Neuromod's claims.
I'm not made of money, but since I find myself right at the window between moderate and severe, all I need is a little push to get down to moderate. That's what Lenire can reasonably be expected to offer right now, and would be worth it, even as I am in the west coast of the US. The Michigan devices' release is still a definite MAYBE late 2020, and I'm not about to cancel a potential Neuromod early 2020 appointment just to risk the Michigan device to actually be commercialized maybe even years later.
- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
- -
Er no.
We don't all have the money to burn especially when we are finding it hard to work and retain a living and have kids to support. I may as well just try tons of supplements first. Probably get the same if not better results.
I've seen no proof this is doing a lot from the reports we are getting in. Would love it if it did work though.
I'm sorry about Desyncra's results for you.
It's about tied, and this is ignoring the reviews that are on Tinnitus Talk but not in the User Experiences thread.
I see that they've addressed commercial applications of the device in the Q&A threads, but none of them say whether or not Neuromod is taking on new study participants. Am I way too late here?
The bit on the latest podcast concerning hyperacusis patients being "hyper-responders," in addition to my similar tinnitus profile to @Redknight (onset, loudness, pitch perception) leads me to believe I would do well with this.
I'm mostly concerned because it sounds like the comprehensive audiology test employed by the Neuromod researchers is way more sensitive than the shit one I was administered in the United States. I think this bit plays a large part in the effectiveness of Lenire and tinnitus sufferers' prognosis.
The bit on the latest podcast concerning hyperacusis patients being "hyper-responders," in addition to my similar tinnitus profile to @Redknight (onset, loudness, pitch perception) leads me to believe I would do well with this.
I'm mostly concerned because it sounds like the comprehensive audiology test employed by the Neuromod researchers is way more sensitive than the shit one I was administered in the United States. I think this bit plays a large part in the effectiveness of Lenire and tinnitus sufferers' prognosis.
As of right now they aren't doing anymore trials but are collecting actual patient data since they are now commercialized. Because it is real world patients data, not trial participants, it will not be easy for them to publicize the data but can use it to refine their technology.
That also means anyone can sign up for it on their website, if that's also what you were asking about.
Good luck. Thank you for keeping the community up to date with your progress too. Hope you see large permanent improvement
Thanks for the quick response. I'm mostly concerned with how the efficacy of the device may entirely hinge on the appropriateness and sensitivity of the audiogram/MML findings. I fear that if the device truly held the capacity for positive neuromodulation that the benefits would be stifled due to irrelevant audiograms... and then we're just out of more money.
I think the community consensus is tinnitus you can only hear in certain situations, like in your house or when it's quiet. If you have this level of tinnitus, then you can reasonably expect a complete elimination or a halving of volume, especially if you have hyperacusis. For moderate/severe sufferers it will probably be good to knock them down a level (severe to moderate, moderate to mild, etc), or at least take the edge off.
AfroSnowman
Member
- Jul 23, 2019
- 1,074
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
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