MemberI also had an appointment that I canceled. At my current tinnitus state I cannot see that it is worth 4 trips to Dublin. If they consider to change to one initial onsite sessions and follow ups by Skype I might reconsider it again.
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Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
At the most I'm thinking a few months or so, so sounds like I should be good...
Thanks for the info!
- Apr 25, 2019
- 78
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- don't know, probably motorsport + headphones for last years
@hans799, jo napót kívánok - many thanks for the feedback, hope that in the next 3-6 weeks everything will settle back again and you'll experience further improvements over the initial 6 weeks success.
Isn't it time for Neuromod to really reconsider and postpone or completely stop deploying this second stimulus? It seems to me that for many It only brought worsenings, there was no single person that experienced positive change in any way, only worsening, new tones, reactivity and setbacks?
I know It's there to avoid the plateau effect, but at what cost? Better get lower tinnitus in 6 - 12 weeks to some level, than get it lowered first and then worsened beyond the original state.
Let's hope they're collecting and interpreting all this data and maybe invent different timings, treatment schedules or just simply improve the treatment overall.
Isn't it time for Neuromod to really reconsider and postpone or completely stop deploying this second stimulus? It seems to me that for many It only brought worsenings, there was no single person that experienced positive change in any way, only worsening, new tones, reactivity and setbacks?
I know It's there to avoid the plateau effect, but at what cost? Better get lower tinnitus in 6 - 12 weeks to some level, than get it lowered first and then worsened beyond the original state.
Let's hope they're collecting and interpreting all this data and maybe invent different timings, treatment schedules or just simply improve the treatment overall.
I still don't get why Neuromod uses 0 delay for their PS1 program, when both Shore and Minnesota seem to prefer delayed stimuli.
Has anyone got more knowledge about this?
I mean, Hubert Lim should have interfered if they were wrong?
Has anyone got more knowledge about this?
I mean, Hubert Lim should have interfered if they were wrong?
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
I believe that they tried delays and found that synchronised timings produced longer lasting results.
That must be the case, yes.
I'm wondering why Shore hasn't tried this in her study (https://stm.sciencemag.org/content/10/422/eaal3175).
She has only used delayed stimuli, ignoring the synchronised timings.
In the podcast, Dr. Ross O'Neill mentions that one of the doctors who is working on the Minnesota device worked with him on Lenire for two years or so before they released it to the public. So I would imagine both devices will be similar.
Contrary to their rhetoric, I am not seeing a real clear grasp on their part of what a stimulation parameter will yield with patients. I see them engaging in a lot of what looks like almost random trial and error with patients.
@hans799 said:
"Neuromod have seen an extremely low number of people not responding within the 12 week window."
That is the sort of face-to-face stat exchange I was asking for up-thread.
IMHO, those stats stand in stark contrast with what we're seeing in the user experiences, where there has been an extremely low number of people who did respond (in a statistically significant and positive way). Either something is systemically wrong about how the user experience data is being gathered (presumably due to the uncontrollable nature of the partial demographic) or Neuromod is simply not being honest.
AfroSnowman
Member
- Jul 23, 2019
- 1,074
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
I know Susan Shore has several patents for her device/research. Maybe the delay timings per her research are patented and Neuromod can't use them. I see no other reason why they wouldn't be using them as one of their settings.
We're not talking about a patent on something innocuous like a doorknob here where there are many ways to do the same thing. If you're faced with a patent on something that works and to avoid the patent it either does nothing or makes your condition worse, then I'd say the system is profoundly and comically f*cked.
A more likely reason is Neuromod just doesn't have as firm a grasp on the underlying science and methodology as they sound--especially given the track-record of their prior failure with MuteButton.
I cannot imagine that. They have been working on Lenire for ~10 years. Hubert Lim works with them. Shore's results are public. There is just no way they are not aware of this. The only reason I can see why they use these timings is that they think they work the best.
MRItechssuck
Member
Or they are using people as guinea pigs to acquire data... like a work in progress or on the job training (for them).
bobvann
Member
Kind of like some video games and some software programs do. Sell you the product and get you to do their beta testing.
If this turns out to be the case and it wasn't disclosed, sounds potentially like a class action lawsuit.
I have been following this thread for a while now and reading all the user experiences has really killed my hope for this device. I'm now convinced Lenire's self-reported 70% success rate is a lie and they actually are no better than placebo. And for some even worse than that.
Someone literally just posted that it made theirs better. And not just their research, but my own independent data gathering has said it's 70%.
bobvann
Member
Neuromod has been guilty of opaqueness and doublespeak for some time now. They have created the perception among the public that the probability of statistically significant for anyone accepted for treatment is very high. But when asked, they have categorically refused to release any details other than things about hyperacusis sufferers being super-responders. * The closest to hard data we got was in a Vimeo video from a conference Hubert Lim did which was summarily smacked down by Neuromod. Then they gave all sorts of excuses for the lack of data:
a) peer review will take a long time... because muh data volume
b) data about those now using the device can't be released... because muh privacy
Despite that, they will gladly throw out exuberant numbers one-on-one when you're in the clinic to make sure you write the check.
If the public had nothing go by beyond their word that's one thing. But the user experience reports, limited in number as they may be, act as the verify part of trust but verify.
And how is that going?
Well, if nothing changes, then the conclusion in April will be that the trust can't be verified. There is a disconnect that needs to be explained.
Where should we go when that happens?
At the very least, Tinnitus Talk's data (and based on the preview, it's going to be really well done) should be brought over to them and they should be asked to answer for it in classic 60 minutes fashion. If they slam the door or give increasingly farcical answers then it will be pretty hard to hold onto that initial benefit-of-the-doubt trust.
* At least one (from memory) in the user experience thread reported he/she has hyperacusis but is not a super-responder.
MRItechssuck
Member
I don't know... one would have to prove it. I'm not saying there was anything necessarily nefarious, other than a company seeking profits for an "unfinished" device.
IMO they released an unfinished product... they never said it was a cure. To increase confidence they pay someone with scientific recognition (MN).
Don't corporations do this all the time? They release something rushed to market and constantly improve upon it as they get customer feedback. As someone said, it's like a beta device... and I really had high hopes this would work.
Medicine doesn't work like technology. If this were a beta like technology, they would market it as such. There will be an improved Lenire II, but it's a completely different product that uses Minnesota timing instead of current timing.
If it was ineffective or actually caused damage there would be a recall. In all the countries Lenire is in right now there has been no recall. And it's not because it's in the EU, even though EDA regulations are weak, individual countries have very strong regulations. Especially Germany, a country it's being sold in.
FounderI agree with you and we'd definitely want to do that. Besides that, come summertime, I'm really hoping we'll be seeing the peer review published. It's been a long time coming. I can't blame people starting to become suspicious at some point if it keeps being delayed.
Later this year another chat with Neuromod would be good. I'm also interested in how they sponsored the BTA + ATA meeting, and took part in the UK House of Commons tinnitus roundtable.
Actually, we're going to the TRI conference in Vancouver in May. Neuromod will be representing there, too. We will make sure to cover that. Maybe we're even able to schedule a chat with them whilst there, if their schedules permit.
MRItechssuck
Member
Define "ineffective." If it shows a few have benefited... then it isn't ineffective, however... it doesn't mean it's not an unfinished or "raw" device.
I could see a recall if the devices begin to spontaneously start on fire... but otherwise... I doubt it.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
You do realise that this was never going to be a 100% effective cure right? The people it doesn't help were always going to rack up on here.A few more experiences from users saying that Lenire didn't help or worsened tinnitus, and the reputation will be ruined
MRItechssuck
Member
I still have hopes for the device, but until more data is released by them or the report here... I'm having a wait-and-see attitude.
If people look at the data and think it's still worth gambling their money, that's their prerogative. The more serious issue, IMHO, is one of TRUST. For Neuromod to say the odds are X and the odds we see in the field are much lower, it calls into question their honesty. If they didn't overpromise and said you've got a 1/10 or 1/20 shot of significant improvement then that issue wouldn't be there, but then the level of excitement (and investor interest) wouldn't be as high.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
Thanks very much for this assessment, GlennS.
It also occurred to me that so far the great majority of this forum's respondent's results have been quite similar to the placebo-ish, barely substantial improvements indicated by all of those clinical trial interviewees on YouTube.
The most troubling, new aspect concerns various posters' reports of additionally worsening effects (some quite severe). I surely hope that such results were not experienced during the original trials, and that is why all sorts of excuses have been made for not releasing this data.
It also occurred to me that so far the great majority of this forum's respondent's results have been quite similar to the placebo-ish, barely substantial improvements indicated by all of those clinical trial interviewees on YouTube.
The most troubling, new aspect concerns various posters' reports of additionally worsening effects (some quite severe). I surely hope that such results were not experienced during the original trials, and that is why all sorts of excuses have been made for not releasing this data.
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