Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
MemberSorry, if this is a wrong kind of question...
I would like to make an appointment and start using Lenire, and I live in England.
But, I am only able to visit Dublin on Sundays, Mondays and Tuesdays. Would that cause any problems? Can I pick the dates of my appointments?
I would like to make an appointment and start using Lenire, and I live in England.
But, I am only able to visit Dublin on Sundays, Mondays and Tuesdays. Would that cause any problems? Can I pick the dates of my appointments?
Sounds good to me. Maybe this happens before I get an appointment in Ireland.
Neuromod Medical currently only operates 2 days a week. I believe those days are Tuesday and Friday, if nothing has changed since July.
No wonder they're so booked! They seriously gotta get their own office and work Monday through Friday.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
Could be more of a 'soft launch' to iron out the process?
It also looks like they are using several combinations of timings (dissimilar to TENT-A1 / A2) - perhaps they have learned something from the last trials and want confirmation before they roll this out properly?
My suspicion has always been that the trials were not performing up their expectations which is why they brought in Dr. Lim and gave him a stake in the company. Since then his added insights from the University of Minnesota have likely been incorporated into the current version of the device. That would explain the lackluster testimonials and general evasiveness from the company based on the previous programming. They're probably stuck using outdated trial results knowing that they've since made the necessary improvements. But of course they can't say that because it would completely undermine their credibility.
I've been a staunch Neuromod defender up to this point but your narrative is starting to sound more credible with each week that goes by, not that Neuromod is a "scam" or anything simplistic, but that while they've made strides that they have again jumped the gun ala MuteButton when they should have done a 3rd trial first.
Perhaps they wanted to give the most chronic sufferers a way out early though. Most people aren't going to fly to Ireland but severe cases will.
If what you are saying is true (though there is no indication of it, especially since some of the testimonials were great), it's moral rights ethics vs utilitarian ethics.
Who cares if there's anything going on like that behind the scenes so long as the sufferers are getting a chance for relief sooner rather than later. To date, this is probably the best thing and only thing on the market that actually can reduce the damn sounds themselves so who cares what's going on behind the scenes. There's always some craziness behind the scenes of any show (organizations and government in general), that's just how life is.
It's an attempt to put all of this into the proper context in order to appropriately adjust expectations.
The core issue, which is something that's been discussed for months, is risk/reward or cost/benefit. Trials are supposed to minimize uncertainty so that those considering the treatment have the best possible idea how much it will work. The less test data... the more uncertainty.
From an ethics standpoint, it seems as if people are going to function as de facto test subjects then they should not have to pay for this device. That's because they are acting as test subjects, not customers. Once the device is being marketed not as a highly experimental device for early adopters but something that has a whole marketing push behind it, expectations change.
So that's the thing. Lenire is inhabiting a really gray area inbetween an experimental device and a proven product where they are sort of using early adopters as guinea pigs. The nature of tinnitus is such that it can never be 100% proven. I'm not expecting that, but I'm not sure it's been tested enough, plus the lack of peer review.
That's why opinions on this device vary widely depending on where you come down on this way of doing things. It's not that Lenire is overpromising. They've put enough fine-print in there to cover their rears. But it's the whole idea of money changing hands with no good assurance as to whether the thing will help at all (or maybe even make it worse as with Allan). EU approval not withstanding, operating this way doesn't really distinguish Neuromod from overt scams.
What they do have in their favor is SOME test data and testimonials. But as has been discussed ad nauseum, the exclusion criteria of those tests are stricter than current criteria, such as duration of tinnitus (something I'm still concerned about).
The reason people are jumping onto Lenire is because it's the only game in town right now with no clear idea when Susan Shore or Michigan's devices might appear.
I'm just summarizing my thoughts because I really think Neuromod should have held off and run a third trial with the same looser exclusion criteria they're currently using. As it is now they are going to generate a certain percentage of paying customers for whom this device isn't going to work, unlike test subjects who presumable wouldn't have to pay. That will instill more negative word of mouth vs. test subjects that could walk away thinking "nothing ventured nothing gained".
People just tend to be more willing to be guinea pigs when they aren't gambling their own money.
For me, I wish I had another six months or so to wait around and THEN make a decision to go to Ireland but I had to decide whether to reserve an appointment sooner rather than later. That means I kind of have to gamble rather than to get some definitive results from those who went before. I was really hoping by now the jury would be in but with them only having the office open twice a week that explains why word of mouth is still so limited. I haven't done a full estimate but I'm guesstimating it would cost me about $5K or start to finish for travel, lodging, and the device. That's pretty high stakes considering I'm wrestling with college tuition for my daughter. But I feel I don't really know that much more what my results will be now vs. before anyone got a device and also have no clear idea when it might first show up in the US.
From an ethics standpoint, it seems as if people are going to function as de facto test subjects then they should not have to pay for this device. That's because they are acting as test subjects, not customers. Once the device is being marketed not as a highly experimental device for early adopters but something that has a whole marketing push behind it, expectations change.
So that's the thing. Lenire is inhabiting a really gray area inbetween an experimental device and a proven product where they are sort of using early adopters as guinea pigs. The nature of tinnitus is such that it can never be 100% proven. I'm not expecting that, but I'm not sure it's been tested enough, plus the lack of peer review.
That's why opinions on this device vary widely depending on where you come down on this way of doing things. It's not that Lenire is overpromising. They've put enough fine-print in there to cover their rears. But it's the whole idea of money changing hands with no good assurance as to whether the thing will help at all (or maybe even make it worse as with Allan). EU approval not withstanding, operating this way doesn't really distinguish Neuromod from overt scams.
What they do have in their favor is SOME test data and testimonials. But as has been discussed ad nauseum, the exclusion criteria of those tests are stricter than current criteria, such as duration of tinnitus (something I'm still concerned about).
The reason people are jumping onto Lenire is because it's the only game in town right now with no clear idea when Susan Shore or Michigan's devices might appear.
I'm just summarizing my thoughts because I really think Neuromod should have held off and run a third trial with the same looser exclusion criteria they're currently using. As it is now they are going to generate a certain percentage of paying customers for whom this device isn't going to work, unlike test subjects who presumable wouldn't have to pay. That will instill more negative word of mouth vs. test subjects that could walk away thinking "nothing ventured nothing gained".
People just tend to be more willing to be guinea pigs when they aren't gambling their own money.
For me, I wish I had another six months or so to wait around and THEN make a decision to go to Ireland but I had to decide whether to reserve an appointment sooner rather than later. That means I kind of have to gamble rather than to get some definitive results from those who went before. I was really hoping by now the jury would be in but with them only having the office open twice a week that explains why word of mouth is still so limited. I haven't done a full estimate but I'm guesstimating it would cost me about $5K or start to finish for travel, lodging, and the device. That's pretty high stakes considering I'm wrestling with college tuition for my daughter. But I feel I don't really know that much more what my results will be now vs. before anyone got a device and also have no clear idea when it might first show up in the US.
- Dec 18, 2015
- 618
- 45
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- Noise induced, loud rock concert
It's nothing for European citizens to fly to Dublin. I have mild tinnitus and still want to give Lenire a try since the flight price is only 80 euros return for me (I fly from Poland). It's the same for most countries in Europe. I have my appointment on September 27th.
- Dec 18, 2015
- 618
- 45
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- Noise induced, loud rock concert
Are you sure about that? When I call their phone line it says their offices are open Monday-Friday 9am-5pm. Why would they misinform?
ThomasW
Member
- Jun 9, 2019
- 55
- Tinnitus Since
- February 2019(nearly gone)
- Cause of Tinnitus
- Medication
Like games or software the first few months of release is a public trial. By Christmas people will know if it works or not. I'm sure other countries are waiting for public results before they want it rolled out in their country.
I read a good quote "You don't cure asthma, you treat it" and I think that's a good way of looking at devices like this. Neuromod have said one of the main goals of their device is to lessen tinnitus so people can get back to work, not cure it. If there are improvements then it's a worthwhile treatment for others who have exhausted all other avenues of tinnitus treatment but people need to be realistic when they look at this device.
Yeah I'm with you on that one.
I don't really care whether Neuromod went in a linear path from scientific theory to complete experimental validation to perfectly working product as some people think they should have.
Or had to invite Hubert Lim in to perform demonic rituals.
What I care about is finally getting a tinnitus treatment that works, at least for some people. And it seems we have that.
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
Apply Occam's razor in this scenario I think. The simplest, least assuming explanation is more likely to be the right one.
The reason they're not renting out rooms full time is much more likely to be lack of capital or perhaps they don't have enough staff to man the medical stations full time. Whilst the staff that they have available are needed at homebase in city centre several days of the week for research work?
The reason they're not renting out rooms full time is much more likely to be lack of capital or perhaps they don't have enough staff to man the medical stations full time. Whilst the staff that they have available are needed at homebase in city centre several days of the week for research work?
How can you assume that? The question is... Does Lenire work for a sufferer who has had tinnitus for over a year or two... Otherwise... Well it's just not worth taking seriously since most people's tinnitus fades regardless. Where are the stats, are there any?
Sorry for my tone, I've been following this thread for eons... I hope you're right and your optimism succeeds. Dr. Lim did nothing demonic, he schooled these clowns on shit they didn't know.
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
It could be their secretary for taking phone call and scheduling appointments doesn't always work out of the hermitage clinic. So you can always call them for support. I guess?
Both are true. They are open to assist patients Mon-Fri, but only have appointments Tuesdays & Fridays. The previous question was about which days he could be in Dublin, given his restrictive timetable.
I suspect they prepare devices, do follow up calls with patients, training etc etc the other days, but I didn't enquire in detail what they do the other 3 days.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
Tinnitus duration criteria for TENT-A2 was up to 10 years...
Meanwhile clinical improvement (MCID) increased from 65.9% in TENT-A1 Arm 1 to 86.6% in TENT-A2 Arm 1.
Unless you are suggesting that they have cherry picked patients who have suffered with tinnitus for only a few months then I think we can safely say that duration is not an issue.
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