Alex Matyjasek
Member
I just posted on Facebook: "does anybody know about MuteButton 2?", and I was surprised to see that there weren't many tinnitus sufferers that knew this device existed...
MuteButton
- Thread starter Jim
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Member"WOW" - they desperately need our financial contribution from Tinnitus Talk then!
That group is not administered very well imo. There are very few pinned posts or documents for people. Not surprised.
All, I do NOT want this to get political. We need to watch govt shutdown though as it does affect FDA and approvals for new devices. Just something to understand when we talk about Neuromod navigating the US approval process.
I'd say if you don't have tinnitus, or no one around you has tinnitus, then probably nobody is aware of it. Zippo. I got to know it a couple of weeks ago and only because I got it. Just told my friend about my situation - firstly he was shocked to know how we all live with it and secondly - he's never heard about it.
I'm sure there are tons of other things like tinnitus and survivors have similar forums like this one that we have no idea about and probably they're in the same boat just with a different crap than tinnitus.
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
Greetings fellow TINNITIANS.
I'm wondering as well, how far are they at testing different parameters to achieve the best outcome for most subjective tinnitus sufferers?
Also, didn't ACRN have all this fuss and optimism with clinically 'valid data' and look where that went? How do we know this is going to be any different?
€24 million for marketing haha but what I'm curious about is what they are using the €24 million for? Further trials? Contract negotiations? Marketing?
I'm wondering as well, how far are they at testing different parameters to achieve the best outcome for most subjective tinnitus sufferers?
Also, didn't ACRN have all this fuss and optimism with clinically 'valid data' and look where that went? How do we know this is going to be any different?
Who knows. It's really just guessing until you see their ledger. Could be operational costs.
I am just stating they have 24 million to play around with on an adverting campaign if they wish to do so.
All it would take is one high-profile celebrity endorsement like William Shatner (who has spoken out about tinnitus in the past) and word of mouth would spread real fast.
- May 29, 2018
- 1,161
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- Neck/stress
Fuck Shatner. He can do one! Without him and his ATA habituation buddies, telling the world tinnitus fades away to some magical place in our subconscious, we would have a cure by now and none of us would be going through this hell.
Yup, I never got why none of the high-profile celebrities never did anything to raise tinnitus awareness. Chris Martin to start with.
Because they don't want to be stigmatised. They don't want to appear "weak"... As we know people who don't have severe tinnitus/hyperacusis, and even doctors, consider us as "depressed", not tortured by hearing damage.
Totally disagree. It is wrong to look at medical progress the same way as waiting for the next Samsung Galaxy. There is NO GUARANTEE that a cure is even possible. If it happens, great, but if not, it's not ATA's fault for promoting coping mechanisms.
As for Shatner, he's had tinnitus longer than you or I have, for over half a century. I don't know how severe it is for him these days but don't presume that he doesn't know or appreciate the true nature of tinnitus suffering.
They do talk about it. It's just a downer so it's not a popular conversation topic on the talk-show circuit.
It doesn't take long off of a google search to find many quotables from celebs talking about their tinnitus.
It seems like more celebrities have it than don't. Not just musicians. If an actor did action scenes with explosives, they probably got it. Like not that long ago Linda Hamilton talked about how she got it from shooting T2. For all we know that may have been a big driver in her various emotional problems that followed. leading to career decline, etc...
Then you have Daft Punk's Thomas Bangalter. It's possible his tinnitus may be a reason why that act takes so long to release new music.
That's the thing is it's hard to quantify the toll that tinnitus takes, considering that it sort of functions like a boat-anchor on your life. To the people around you, you may just seem moody or unmotivated and you're going to be reluctant to use tinnitus as an excuse for fear of being classified as disabled. You've internalized the idea that there's no cure and you just sort of muddle through life as best you can.
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
Yeah Shatner got his noise from the episode "Arena" in the original Star Trek series. I don't think the tinnitus in that ear bothered him until years later. Apparently he is content with his WTG's sound masking. He might be too cheap to donate to the cause. Maybe he gave quite a bit to the ATA and didn't see much for results?
Or why don't they pour their umpteen millions (or at least a fraction, which would still be a bazillion million) into research. If I were a really rich person suffering from an ailment that has no cure yet, what could be more natural than using my wealth to bring that cure to light? I just don't get it.
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
I agree, let's get back to the topic.
But at the same time there's not much we can say until the device is released and we try it out.
But at the same time there's not much we can say until the device is released and we try it out.
Yeah it's all just speculation until then. To be honest I'm kinda considering being part of the first wave to do it.
While you can't solve problems without money, you can't treat money like pixie dust and expect it to work miracles, especially with things like this which conventional wisdom says CAN'T be cured. Those who are venturing in this territory are swimming hard against the tide of that conventional wisdom and hence are taking a big risk. Innovation often happens almost by accident rather than because armies of people are working on huge R&D budgets. For instance, I recently read the story about the Enchroma glasses that have effectively cured color-blindness. It was an accident.
https://www.npr.org/sections/money/2018/06/13/619713983/episode-847-inventing-accidents
I just bristle at the notion that "if only someone did X, it would be cured already!" There are never any guarantees when it comes to medical advancements. It's not just a function of effort.
So there's a better coping strategy at present? Do tell.
As far as connecting this to the topic, what Neuromod SHOULD do, which I've mentioned before, is reach out to a celebrity to use the device. The list is endless. Maybe Huey Lewis who is having a hell of a time right now?
https://www.usatoday.com/story/life...ws-says-cant-hear-well-enough-sing/515672002/
How does conventional wisdom say it can't be cured? Please drop some science about this on me because I am beyond interested.
Just because there isn't a cure or treatment for something doesn't mean it will never or can't happen. That line of thinking is fucking retarded, excuse my french. Do you suggest we sit back and wait for a tinnitus treatment to fall in our lap? Also, are people suffering immensely and having quality of life issues due to color blindness. Tinnitus is a different story, which can't wait for something to just come along.
The only way to progress and get closer to a cure is to keep researching and trying. The answer isn't clear cut, but by asking questions and pursing a cure it is 100x better than waiting for it to come along by accident.
The point of bashing the "habituation" thought process is that people repeat it as a cure for ALL tinnitus sufferers. This is not the case. This leads people to also believing "oh tinnitus isn't a big deal since people can just habituate. Why should I donate money to help fund research if it resolves on its own?" Then this bullshit is repeated on national television by the FUCKING ATA giving a huge audience of people the notion that tinnitus isn't a big deal and goes away on its own. Thus destroying all of the hard work to bring awareness and fundraising to find a cure.
Look, maybe we'll cure cancer, old-age, grow new limbs in a vat. Just clone yourself and upload your memories like Sixth Day. Warp drive. Quantum computers. But I think I've got a good handle on the probability of these things. While I am cautiously optimistic about Neuromod as a treatment, anything that deals with damage at the micro-structure/neurological scale is right on cusp of sci-fi as far as outright cures go.
I've been tolerating tinnitus for the last 26 going on 27 years. What kind of outlook should I have adopted, let's say, 10 years ago? 20 years ago? At the end of the day all we CAN do is sit back and wait. I don't think it's productive to spend a lot of energy shaking my fist at the ATA or shaming celebrities for not doing what I want them to do.
Nobody's saying don't, just that the difficulty of the problem has to be factored in before you expect (as per the context) some celebrity with tinnitus (like Pete Townsend or Sting) to donate their entire net worth to the cause. Anything you put money into has to be weighed against that risk vs. reward. It's their prerogative what they want to do with the money earned (in great measure) by wrecking their ears to bring us entertainment. They aren't obligated to do anything. That's all.
It would be nice if there were an organization that companies like Neuromod could tap into without having to rely purely on commercial VC investors. However, I really do not understand the rage towards the ATA as if they're some sort of evil cabal. I think some people are just looking for some boogeyman to blame for there not being a cure already rather than to simply concede that this is a very very difficult problem to solve, right up there with things like chronic pain, Alzheimer's, Parkinson's, etc...
Thanks for saying it. This is exactly what I meant. I'm almost two years in, my tinnitus has only gotten worse (went from something I could only hear in a quiet room to a piercing tone that cuts through pretty much all normal noise, plus 5-7 various layered sounds that I don't mind as much). I've tried to habituate, I've tried meds, I've tried all the therapy I could get. It's just not an all-around solution and it needs to not be pushed as such. After all, why cure something people can "habituate" to?
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