Look at Mark Hamill as Luke Skywalker. He bashes the new trilogy all the time and says they never should've existed but when Disney drop the bags of money on his doorstep he took it.
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
Look at Mark Hamill as Luke Skywalker. He bashes the new trilogy all the time and says they never should've existed but when Disney drop the bags of money on his doorstep he took it.
Member- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
Then why didn't they just put the best testimonials on and leave the rest?
They're not overlooking anything. They are selling this on the data from the trials, not a couple of testimonials.
It's also possible that not everyone wants to go on camera to discuss their health problems...
Occam's razor (or Ockham's razor) is a principle from philosophy. Suppose there exists two explanations for an occurrence. In this case the one that requires the smallest number of assumptions is usually correct. Another way of saying it is that the more assumptions you have to make, the more unlikely an explanation.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
'Hasty Generalisation' is a logical fallacy in critical thinking.
When one makes a hasty generalisation, they apply a belief to a larger population than they should based on the information they have.
You're right. Assuming that a multimillion dollar company chose to disregard more positive testimonials because it was the right thing to do makes almost as much sense as the people experiencing positive results being the only ones unwilling to do a testimonial video. That's by far the simplest explanation.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
To Bndsmheowqhe:
If I were allowed to participate in this experimental trial (free of charge) and my tinnitus were substantially reduced (let alone eliminated), I would be so grateful and beholden that I would conduct as many testimonial interviews as they requested.
I would also be all over the Internet with this truly life enhancing news.
I would feel like a moral imbecile if I said, "Well, my 5.5 yearlong tragic situation was ameliorated so I will just forget and dismiss it; I have no compunctions about not reporting such news that may be a godsend to others."
If I were allowed to participate in this experimental trial (free of charge) and my tinnitus were substantially reduced (let alone eliminated), I would be so grateful and beholden that I would conduct as many testimonial interviews as they requested.
I would also be all over the Internet with this truly life enhancing news.
I would feel like a moral imbecile if I said, "Well, my 5.5 yearlong tragic situation was ameliorated so I will just forget and dismiss it; I have no compunctions about not reporting such news that may be a godsend to others."
I completely agree. Perhaps the sarcasm in my previous post was less obvious than I intended.
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
I mean this whole debate is born out of your assumption that the positive testimonials without specific mention of volume reduction are in fact just placebo so you may want to rethink that one buddy.
I suggest if you want to continue this you can PM me. I don't think anyone else really wants to read this.
The testimonials were at best underwhelming. You can try to spin that however you like but it would appear that the real life user experiences are following a similar dynamic.
Certainly underwhelming for something worth several (EURO) grand and months of worse tinnitus for such a minor (if any) return.
Let's remember the worsenings were seriously downplayed too. How many people has it happened too? It seems like the majority experience an initial worsening.
What's up with all this negativity? You guys are smashing your gavels like someone already finished the treatment and no one is saying it's helped them.
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
I honestly think some people were secretly expecting a tide of Lenire users reporting enormous and life changing improvements.
And now we're experiencing that fallout.
But it was never going to be that. 66% of people experience some moderate level of improvement, and something like 30-40% are non-responders. With 1 or 2 outliers here and there getting life altering improvement. We were all made well aware that many people experienced temporary worsening, it's on their pamphlet for god sake!
Taking into account that no-one has yet finished their treatment it seems to me that Neuromod's stats are looking roughly accurate. Possibly a touch low on the 66% response rate but that could easily level out with greater numbers and time.
- Feb 11, 2019
- 801
- Tinnitus Since
- 01/2014
- Cause of Tinnitus
- Headcold/Flu
To JayBowson:
Thanks very much for that honest, unadorned assessment.
I am now not sure for me personally if these percentages you quoted justify a $3,000.00 expenditure (and given Chicago prices, I can only speculate if this when locally available will be an underestimate).
I know that after my $5,269.00 expenditure on that useless Desyncra, my wife would unconditionally veto this new therapy given such a substantial percentage of non-responders.
Again, thanks very much for the clarification without any cant regarding it's actual potential.
Thanks very much for that honest, unadorned assessment.
I am now not sure for me personally if these percentages you quoted justify a $3,000.00 expenditure (and given Chicago prices, I can only speculate if this when locally available will be an underestimate).
I know that after my $5,269.00 expenditure on that useless Desyncra, my wife would unconditionally veto this new therapy given such a substantial percentage of non-responders.
Again, thanks very much for the clarification without any cant regarding it's actual potential.
Exactly, they never said it was gonna be a life changing device, just that it'll take the edge off a bit for most people. This could be all we need in the meantime while we wait for better treatments like the Shore device.
The worsenings are scary, but if the end result is that it gets reduced a good bit, even if it's just 10%-15% from baseline but it lasts, it is worth it if you ask me. It's a reasonable expectation for a first of its kind treatment.
AfroSnowman
Member
- Jul 23, 2019
- 1,075
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
I was just going back through the Q&A video and the CEO kept referring to 2/3's showing 'clinically significant improvement'. I know that this answer is somewhere in this thread, but to save me the time of searching, does anyone know what their definition of clinically significant is?
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
>7 points on THI scale. From memory average improvement in TENT-A1 was around 14 and TENT-A2 just under 20.
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
Just to further clarify on this. What they really meant by "clinically significant" was that they could realistically attribute these changes to the Lenire device. Not that these changes were in any way life altering. As I can imagine 7 points on the THI scale wouldn't translate to huge concrete changes if your baseline was >100.
At what point have the worsenings ever been downplayed?
Every single Lenire user, myself included have all repeatedly told this community that worsenings are a strong possibility during the treatment. This has never been shielded from Lenire patients or prospective patients.
It's literally pitched to you before you even undergo any treatment in order to set your expectations.
To summarise the current state of this thread...
Something that seems to be constantly forgotten here is how unique tinnitus is to every single person. As such, so is the response to any treatment and that individual's perception of what equates as worsening or improvement. Yet everything is taken as gospel... XXXX got worse so mine is probably going to get worse too... XXXX saw improvements but it's probably just placebo. It sounds like some of you have already talked yourself out of the treatment without actually letting anybody actually finish... that's fine, your choice, but let other people make their own without descending on them like vultures.
If many of you are here to just back and forth around how much trust you DON'T have for Lenire or why you don't see this treatment being of benefit to sufferers, then there's realistically no need for you to be commenting here. Save the data and save the other people looking at this thread from having to wade through mountains of rubbish before they find actual, constructive conversation.
Sorry if this seems abrupt, but it needs saying. This thread has gone off on a real tangent and it's getting boring.
AfroSnowman
Member
- Jul 23, 2019
- 1,075
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
I don't remember it. If it was said it'll be in the interview video.
I'd guess just THI because although we can kind of measure volume, different volumes will affect different people more than others. My relatively mild tinnitus (just a notch above ambient noise most times) bothers me more than my friend who can hear his in a nightclub.
Although I'd love to gain tinnitus sound reduction from Lenire at least one of the testimonial videos say that although his tinnitus didn't decrease in volume it did decrease in "intensity". So that's a possible outcome too not related to volume you have to figure?
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
Yes they measured Tinnitus Loudness Matching (TLM) and Mean Masking Level (MML) but there is no standardisation for clinical significance and method in these like there is with THI.
In the safety and feasibility study (predecessor to TENT-A1) they found the device gave an average of 7.5dB reduction in TLM for compliant patients.
The worsenings aren't just a possibility, they're a fairly common issue that the majority of patients seem to experience to some extent, at least it seems that way among the majority of users. I don't mind the fact that it happens, as you said, medical treatments have varying effects on each individual because each of us have tinnitus for different reasons. So our experience is unique. But you got to admit, it's a fairly scary and likely scenario.
I'm certainly not shitting on Neuromod. As I said prior, I think this device will work, but it's the first of its kind. Many improvements will be made later down the road to increase effectiveness of the device.
As it stands at the moment, it seems to give most people a fairly mild reduction. It doesn't seem like it's as potent as the other two bimodal devices though. (which are nowhere near available to us, granted).
Do I think Lenire is worth the 2,500 euros and two months of worse tinnitus for just a 7 point THI reduction? No, I don't, but perhaps it's fine for a severe case who can take any reduction they can get.
Efficacy and numbers play a huge role in debating on wether or not you want to shell out money on a medical treatment. Just because I'm waiting it out on Lenire doesn't mean I'm saying their company is a complete sham, I'm just going to wait a bit longer until Lenire 2.0 or 3.0 come out. Perhaps they can improve the percentage of responders, increase the potency of reductions (more stimulatory pathways/multimodal) and iron out the initial spikes.
Perhaps Michigan's device will be out next year, by then it would be interesting to see if we could recommend one device over another for different subsets of tinnitus.
Not to me they don't.
I also think this continual assertion that those who are shifting negative were expecting to see miraculous improvements is a strawman argument. And I can see that this is the party line that those who are still in camp optimist will run with for the foreseeable future. This is already throwing the discussion into a pointless repetitive loop.
- Apr 22, 2019
- 32
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- ear infection
Thank you for this post Cojackb. I have my appointment on Friday, I fully understand that there is a possibility of worsening of the tinnitus during treatment. I am, however, prepared to take the risk for a reduction in this damn never ending screech.
FounderCan we stop to enjoy @Hazel interviewing Dr. Susan Shore at the TRI conference in Taipei? Special thanks to @Autumnly for providing her magical touch; her editing work is impeccable. (Psst, we will publish more TRI mini interviews in the coming days, keep an eye on the Tinnitus Research Initiative (TRI) 2019 Conference thread).
All this while the next Neuromod interview is being worked on. I will be spending many hours in the editing room on that one - the perfectionist that I am... You can look forward to the interview being released in the next couple of weeks, unless something unexpected happens
It takes quite a bit of team effort. We have fantastic people like @Liz Windsor helping, she is the Goddess of transcribing. Yeah, we won't forget those hard of hearing or others who prefer reading over listening.
Sometimes we wonder though why do we bother, is our work really appreciated? I'm not specifically talking about this thread, I'm talking about the overall tinnitus community; there's so much negativity, complaining, and blaming others. If only more of you volunteered your time and skills, helped with our projects, or became benefactors... Maybe take a minute and reflect on what YOU could do for the cause. And then PM me.
All this while the next Neuromod interview is being worked on. I will be spending many hours in the editing room on that one - the perfectionist that I am... You can look forward to the interview being released in the next couple of weeks, unless something unexpected happens
It takes quite a bit of team effort. We have fantastic people like @Liz Windsor helping, she is the Goddess of transcribing. Yeah, we won't forget those hard of hearing or others who prefer reading over listening.Sometimes we wonder though why do we bother, is our work really appreciated? I'm not specifically talking about this thread, I'm talking about the overall tinnitus community; there's so much negativity, complaining, and blaming others. If only more of you volunteered your time and skills, helped with our projects, or became benefactors... Maybe take a minute and reflect on what YOU could do for the cause. And then PM me.
On a more positive note: Lenire is expected to be in Belgium's Brai3n clinic from May 2020, if all goes according to plan. They told me they will work with an intake including your personal story, a qEEG and other tests to determine what treatment would suit you best. Lenire would be one of the neuromodulation treatment options offered.
To be honest the constant negativity of the thread has only reinforced my dedication to Lenire. I'm an optimistic person by nature and I try to be grateful whenever possible. I know Neuromod has a profit motive but still, people have spent almost a decade of their lives working to help patients just like me.
I choose to trust the science and trust the process. The only anecdotal evidence I care about will be the anecdote I make in my own life. Since I'm getting the device on November 5 I have an excellent chance of having my first ever quiet Christmas.
Now isn't having hope and looking forward to things like that much better than spouting negativity and despair?
I choose to trust the science and trust the process. The only anecdotal evidence I care about will be the anecdote I make in my own life. Since I'm getting the device on November 5 I have an excellent chance of having my first ever quiet Christmas.
Now isn't having hope and looking forward to things like that much better than spouting negativity and despair?
Hi Bartoli.
What is the Brai3n clinic? Is that a typo? I've googled, and am not coming up with anything.
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