Lenire — Bimodal Stimulation Treatment by Neuromod

[Lilah]

We are already anonymous on here

Although anonymous, some people seem to have their first names, birth years, etc. as part of their usernames (the profile also contains other information such as location, tinnitus since, etc.)...a lot of people have also provided the dates and times of their appointments.

So, Neuromod may easily put two and two together and figure out the person based on this information.

Since this thread is public and no username is required to view, I am sure Neuromod is checking this thread frequently and it won't be difficult to figure out who is who. Since people don't have their hands on the device yet (although accepted), they may be fearful that Neuromod might find some reason to exclude them.

A bit too cautious I think, but some people might have this fear for whatever reason.

They may also be fearful that they accidentally say something that puts them under the exclusion criteria.

 

[Markku]

A bit too cautious I think

I agree. I greatly doubt they would do detective work like you described.

They are a for-profit entity, they are not trying to do their best to find ways to exclude people. They will trust what people tell them in the questionnaire and at the appointments. IMHO.

 

[ruud1boy]

It's not beyond the realms of possibility that they could say to people visiting them for an assessment 'we'd rather you didn't post stuff online about your treatment experience'. That's not paranoid fruitcakery, it's just eminently possible for a commercial entity in the position they're currently in.

 

[Markku]

It's not beyond the realms of possibility that they could say to people visiting them for an assessment 'we'd rather you didn't post stuff online about your treatment experience'. That's not paranoid fruitcakery, it's just eminently possible for a commercial entity in the position they're currently in.

This just isn't true.

We've (@Hazel most recently) been in touch with them and they have not expressed any wishes about people not sharing their experiences.

We even told them about our Lenire User Experience Group (and they had good constructive feedback to give on that).

They did say they are not going to get involved in the discussions themselves, but that's the extent of it.

 

[Clearance]

It's not beyond the realms of possibility that they could say to people visiting them for an assessment 'we'd rather you didn't post stuff online about your treatment experience'. That's not paranoid fruitcakery, it's just eminently possible for a commercial entity in the position they're currently in.

Well they never said to that to me, so be quiet with your idiotic comments please.

 

[ChrisBoyMonkey]

Respect people's right to privacy, or at least the attempt of it. In this day and age, privacy is very hard to retain. There are no indications this is something being forced on them, but a choice on their part.

If people wish to be anonymous, so be it. It is their decision. Appreciate any information they choose to share through anyone else.

 

[El BUZZ]

I thought tinnitus was maybe linked with floaters... It seems to be definitely linked with PARANOIA.

 

[Allan1967]

Well they never said to that to me, so be quiet with your idiotic comments please.

Me neither. In fact no hint of that whatsoever.

Way I see it is some people are entering into a €2,000 or €3,000 contract for treatment and understandably they don't want anything to affect that relationship whilst it's on-going.

That doesn't stop people sharing their experience anonymously through a trusted source like @Markku or @Hazel etc. however.

 

[Daniel Lion]

FYI RK... Those assholes at Facebook have locked me out of my account and I'm having trouble accessing it hence why I've disappeared off Faceache.

Good luck Allan,

I feel a strong connection to your plight and know you have been tortured.

I struggle everyday, and am as brave as I can be so my children can have a decent childhood, that involves fun and play. This illness has absolutely ripped me apart.

Never been on Facebook, doesn't sound like a big loss.

Praying your treatment is awesome and you can get back some of what you lost.

Sincerely, Daniel

 

[GlennS]

I thought tinnitus was maybe linked with floaters... It seems to be definitely linked with PARANOIA.

I would agree with that. Sort of like Godwin's Law where all threads eventually talk about Hitler, it seems that tinnitus threads eventually gravitate towards conspiracy theories (R David Case and his Tinnitus Mix being the last stop on the one-way street to nuttery).

 

[Agrajag364]

Peer review not even started yet? OK, how long does a peer review take?

Maybe three months. I understand that it varies a lot though. It depends on whether modifications to the paper and data are asked for by the reviewers. Neuromod posted on Twitter in October 2018 saying they were shortly going to submit the results of TENT-A1 for publication. Maybe they decided to wait til TENT-A2 was ready to write up as well, or maybe the reviewers wanted more/modified data from TENT-A1.

 

[Jazzer]

FYI RK... Those assholes at Facebook have locked me out of my account and I'm having trouble accessing it hence why I've disappeared off Faceache.

Very best wishes Allan.

Together with my good mate @Daniel Lion I sincerely hope good things come out of this for you, and I truly wish for improvements for Daniel also.

You guys are both so young to be suffering in this 'god-forsaken' way.

What bastard things this wretched life can throw at us,

love
Dave x

 

[david c]

FYI RK... Those assholes at Facebook have locked me out of my account and I'm having trouble accessing it hence why I've disappeared off Faceache.

Hope that your Lenire treatment goes well @Allan1967 and that you continue to update us about it - whether directly or anonymously.

Sorry to hear that you've been locked out of Facebook - I wonder if that's anything to do with the BTA?

I note that you had made some really good criticisms of them on their Facebook page and they do like to censor anybody with a different viewpoint and whose criticism might impact on their money-raising.

 

[JohnAdams]

Dr. Shore's device

What device?

 

[eagerUser]

I wish all the people success and huge improvement using Lenire.

You guys just concentrate on your health and stay positive as it makes a huge difference. I totally believe trusting your doctor or your treatment can really change the results.

Best wishes for all

 

[KotaDomowa]

Do I understand correctly that people who already had their assessment visit have an agreed date for receiving the device?

 

[Allan1967]

Hope that your Lenire treatment goes well @Allan1967 and that you continue to update us about it - whether directly or anonymously.

Sorry to hear that you've been locked out of Facebook - I wonder if that's anything to do with the BTA?

I note that you had made some really good criticisms of them on their Facebook page and they do like to censor anybody with a different viewpoint and whose criticism might impact on their money-raising.

It's probably more to do with my trolling!

Seriously annoyed. I've uploaded multiple photos of myself and they keep rejecting it. I even uploaded one of Zuckerberg and they rejected that one!

A BTA rep is going to be at my next local TSG meeting. Thinking of going along and firing some tough questions at him/her.

 

[Allan1967]

Do I understand correctly that people who already had their assessment visit have an agreed date for receiving the device?

I'm back in mid July to collect mine.

 

[Autumnly]

Anyone else just waiting for that email by Neuromod saying that Lenire is finally available in Germany?

What device?

• Susan Shore's team: This device by the University of Michigan
• (Another device by the University of Minnesota)

 

[Tinniger]

First of all, I'd like to apologize for asking these simple questions.

I didn't really understand what ideas of tinnitus the "makers" of Lenire have.

Does anyone already know anything about inclusion and exclusion criteria for treatment?
Unilateral or bilateral tinnitus?
Noise damage or no noise damage?
Hearing loss or no hearing loss?
Presence of hyperacusis or not?

 

[BigNick]

I've been assessed and am going ahead.

They openly acknowledged that whilst some patients had excellent results others had no improvement and to manage expectations.

That's the reality of it. For me the reward is worth the risk.

 

[Allan1967]

Absolutely.

I was approved and am going ahead.

When do you go back?

 

[BigNick]

When do you go back?

August 6th.

Best of luck mate.

 

[Agrajag364]

I've been assessed and am going ahead.

They openly acknowledged that whilst some patients had excellent results others had no improvement and to manage expectations.

That's the reality of it. For me the reward is worth the risk.

Did they give you any odds of improvement?

 

[annV]

@carlover

Will you be trying Lenire? You've suffered for decades, you deserve relief!

 

[JohnAdams]

Anyone else just waiting for that email by Neuromod saying that Lenire is finally available in Germany?

• Susan Shore's team: This device by the University of Michigan
• (Another device by the University of Minnesota)

Ah, so it is still like a prototype.

 

[eagerUser]

Ah, so it is still like a prototype.

If you're talking about Dr. Shore's device, allegedly she is planning to launch it the next year and she has a new clinical trial starting soon (now?).

 

[ChrisBoyMonkey]

Ah, so it is still like a prototype.

It was revealed in an email from her on a different thread she hopes to commercialize it next year, even though the phase 2 trial is still in progress and accepting trial patients.

 

[Redknight]

Though I respect people wanting to remain anonymous, I can't help but cringe that people are refusing to post their experiences on their own accounts. The fact that they are afraid of Neuromod finding it or somehow jinxing themselves by talking about on an anonymous forum it is so cringe.

They don't want to post themselves, but tell @Markku to post for them because apparently that cancels out the jinxing voodoo?

We are already anonymous on here, why are people going through two hoops? Soon people will be buying VPNs and creating new accounts to post.

This is actually funny / sad.

View attachment 30745

I'm not saying I will or won't be anonymous after my appointment or that I care whether Neuromod knows who I am; but all of our appointment dates were published here publicly, it would be pretty easy to figure out who we are to be honest.

 

[Candy]

People were talking about 2023, now it's 2020? Don't get it...