Lenire — Bimodal Stimulation Treatment by Neuromod

#2,613
Allan1967 said:
Well in fairness they do say 2 out of 3 people benefit so if a 1000 people sign up, 333 are going to be let down.

We'll just have to wait see.
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I am just saying, I think we would all be best served by lowering our expectations here. A 7-13 point decline (can't remember exactly, a.k.a. clinically significant) on the THI can be the difference in a good and bad day for some people. And remember, they had no control group and it was their study, not independent. There is lots to be excited about (including improvements in their method) I am just concerned a lot of people are going to be let down here when it doesn't meet expectations. I think a let's try and see approach will be best, there will definitely be winners and losers but I'd not want to go into it predicting a victory.
 
#2,615
Watasha said:
I am just saying, I think we would all be best served by lowering our expectations here. A 7-13 point decline (can't remember exactly, a.k.a. clinically significant) on the THI can be the difference in a good and bad day for some people. And remember, they had no control group and it was their study, not independent. There is lots to be excited about (including improvements in their method) I am just concerned a lot of people are going to be let down here when it doesn't meet expectations. I think a let's try and see approach will be best, there will definitely be winners and losers but I'd not want to go into it predicting a victory.
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What, no control group? I didn't know about that. It looks like we are screwed forever. If there is no control group, how do they know if the treatment works or if the tinnitus just improved by itself?
 
#2,616
BrStan@ said:
What, no control group? I didn't know about that. It looks like we are screwed forever. If there is no control group, how do they know if the treatment works or if the tinnitus just improved by itself?
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I wouldn't take it that far. As has been mentioned these improvements are similar to those who practice CBT but in a faster time-frame and the results linger. We know that this experience can be modulated so to say we are screwed forever is catastrophic thinking. There is hope in this technology and other methods under development, I just don't want people going into this with high expectations only to be crushed on the other side.
 
#2,618
Watasha said:
I am just saying, I think we would all be best served by lowering our expectations here. A 7-13 point decline (can't remember exactly, a.k.a. clinically significant) on the THI can be the difference in a good and bad day for some people. And remember, they had no control group and it was their study, not independent. There is lots to be excited about (including improvements in their method) I am just concerned a lot of people are going to be let down here when it doesn't meet expectations. I think a let's try and see approach will be best, there will definitely be winners and losers but I'd not want to go into it predicting a victory.
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I agree and I appreciate that. It's important to keep your feet on the ground. This is what I have hinted at over the last week or two.

When it's finally upon you people will understand what I mean. Everything you've been talking about for months, the ups and the downs is suddenly a reality.
 
#2,619
Watasha said:
I wouldn't take it that far. As has been mentioned these improvements are similar to those who practice CBT but in a faster time-frame and the results linger. We know that this experience can be modulated so to say we are screwed forever is catastrophic thinking. There is hope in this technology and other methods under development, I just don't want people going into this with high expectations only to be crushed on the other side.
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I am not optimistic at all. There will be no treatment for tinnitus in my lifetime, period. So now if someone wants to be optimistic they are more than welcome to do so but not me. I have had my tinnitus since 1999 and it is getting worse and worse.

Today I have a spike from driving a car with double protection (earplugs and earmuffs), can you believe that? I hope it is just a spike.
 
#2,620
BrStan@ said:
What, no control group? I didn't know about that. It looks like we are screwed forever. If there is no control group, how do they know if the treatment works or if the tinnitus just improved by itself?
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They used what are known as "active comparators" i.e. other treatment interventions expected to have an effect.

https://clinicaltrials.gov/ct2/show/NCT02669069

Described in the above link
"Active Comparator: PS1 Device: PS1
Participants in this arm shall be given an audio stimulus which comprises of a sequence of tones, mixed with a broadband noise that is spectrally modified to compensate for any hearing loss. Electrical pulses in the somatosensory stimulation are synchronous with the tones.

Active Comparator: PS2 Device: PS2
Participants in this arm shall be given an audio stimulus which comprises of a sequence of tones, mixed with a broadband noise that is spectrally modified to compensate for any hearing loss. Electrical pulses in the somatosensory stimulation are uncorrelated and asynchronous with the tones.

Active Comparator: PS3 Device: PS3
Participants in this arm shall be given an audio stimulus which comprises of a sequence of single-frequency tones mixed with a broadband noise with the frequency characteristics of both chosen outside the region of any hearing loss. Electrical pulses in the somatosensory stimulation are uncorrelated and asynchronous with the tones."

It would have been better if they had used a proper placebo - a "sham" treatment, designed to have no effect on tinnitus. They originally planned to do this- in their 2016 pilot study paper they said, in reference to their big TENT a1 and a2 trials "These studies will be followed by a Randomised Control Trial to compare this intervention to a sham treatment"-https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5157761/

It may well be there was a perfectly innocent reason they changed their minds about that - I understand a common reason for not using a placebo is you can't "blind" the participants sufficiently i.e. people in the trial might suspect they were getting an intervention designed to have no effect.
 
#2,621
ruud1boy said:
This isn't required now, as the notion of Neuromod controlling information has been debunked by other sources, but for the sake of clarity I'm happy to confirm that nothing was mentioned in my assessment along these lines.
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...

And let that be the final nail in the coffin - for all the conspiracy theories out there - claiming that Neuromod is trying to do the North Korea maneuver on all tinnitus sufferers seeking help from them and their (brilliant?) device ;)
 
#2,624
BrStan@ said:
I am not optimistic at all. There will be no treatment for tinnitus in my lifetime, period. So now if someone wants to be optimistic they are more than welcome to do so but not me. I have had my tinnitus since 1999 and it is getting worse and worse.

Today I have a spike from driving a car with double protection (earplugs and earmuffs), can you believe that? I hope it is just a spike.
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I am very sorry to hear this. I am not sure of your age, but this is something that can be modulated and a treatment for many forms is likely in the near future. Research in this field is growing exponentially. We know the perception can be altered so it is workable. Best of luck to you, I will say a prayer for your comfort.
 
#2,625
The thing is this technology... i.e stimulating the vagus or the trigeminal nerve is also being used on other conditions.

Right here in Newcastle they are doing similar trials to help stroke victims who have lost the use of a limb like the left arm.
 
#2,627
Allan1967 said:
Everything you've been talking about for months, the ups and the downs is suddenly a reality.
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I certainly hope the waves of pessimism and naysaying are over so I can stop having to invoke this gif in sarcasm:

giphy.gif
 
#2,628
Watasha said:
I am just saying, I think we would all be best served by lowering our expectations here. A 7-13 point decline (can't remember exactly, a.k.a. clinically significant) on the THI can be the difference in a good and bad day for some people. And remember, they had no control group and it was their study, not independent. There is lots to be excited about (including improvements in their method) I am just concerned a lot of people are going to be let down here when it doesn't meet expectations. I think a let's try and see approach will be best, there will definitely be winners and losers but I'd not want to go into it predicting a victory.
Click to expand...
I've kind of convinced myself it isn't going to work, so that if it doesn't I'm not 'disappointed' - but if it does I'll be 'pleased' (absolutely fkin hysterically overjoyed). Hope for the best, but prepare for the worst.

This was also part of the thinking behind stumping up the cash upfront - I think if I took the installment option, I'd be overthinking 'is it working? - is it not working? - do I need to cancel the contract to save money?' Paying for it upfront removes that consideration, so I can just let it happen - shit or bust.
 
#2,629
GlennS said:
I certainly hope the waves of pessimism and naysaying are over so I can stop having to invoke this gif in sarcasm:

View attachment 30904
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There is a difference between pessimism and realism. The reality is that at least 1/3 of those who use this are going to fail and a decent chance that those in the 2/3 will not get what they anticipated. Not only will there be disappointment, but people will be out a decent sum of money. I say much better to lower the expectations going into this and then hoping for the best on the other side.
 
#2,630
Allan1967 said:
You're going to fly from Hong Kong? Kudos to you if you are, that's commitment.

I was wrecked for a week and I flew from England.
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Did the flying affect your ears / tinnitus Allan? I was cacking 'em a bit, as I haven't flown anywhere since my tinnitus went through the roof, but I didn't have any problems. I was scoffing Murray Mints all the way tho'.
 
#2,631
GlennS said:
I certainly hope the waves of pessimism and naysaying are over so I can stop having to invoke this gif in sarcasm:

View attachment 30904
Click to expand...
Not a chance - wait until September when the frontpigs are 6 weeks in and nothing's happened. @davidc will no doubt take great pleasure in telling us all we've wasted our money.
 
#2,632
ruud1boy said:
Did the flying affect your ears / tinnitus Allan? I was cacking 'em a bit, as I haven't flown anywhere since my tinnitus went through the roof, but I didn't have any problems. I was scoffing Murray Mints all the way tho'.
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No, I used blue gel ear plugs on take off and descent.
 
#2,634
We will hear a lot of "I am not sure if it helped" and "it made my tinnitus worse, I hope it will return to baseline" or the best ones will be "it is the same as before but I don't notice it that much".
 
#2,635
BrStan@ said:
We will hear a lot of "I am not sure if it helped" and "it made my tinnitus worse, I hope it will return to baseline" or the best ones will be "it is the same as before but I don't notice it that much".
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But two users have had much better experiences with neuromodulation.

Of course not everyone will have a positive experience.
 
#2,636
BrStan@ said:
We will hear a lot of "I am not sure if it helped" and "it made my tinnitus worse, I hope it will return to baseline" or the best ones will be "it is the same as before but I don't notice it that much".
Click to expand...
Oh man, you're really on a mission today. What's the point in berating this before it's even been used by the public? Results will certainly vary.
 

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