MuteButton

Well, I'll make Dr. Large an offer he can't refuse...My fake nobel prize.

 

well it does not change a fact a lot... who has 1800 to try this has also 2500... Hope someone will try this and review to us...

 

There's already are people trying it, they just haven't came back.

 

I brought up the idea once of a small trial to repeat the Rivolta model, women on the page started complaining about animal rights etc. I was in shock. In time I came to realise that many sufferers don't really want to recover, they have already given up and accepted their fate and just like to keep other miserable folk company, its very sad. But I think if we had enough male contributors we could still get something off the ground.

 

Rivolta model? And we do test on animals, because it's dangerous to just test on humans. The lawsuits they would have...And to be honest, people kill mice and rats...So why not put them to better use? Sadly, we have to do this and it will save millions lives. Some people seem to care more about animals than humans.

 

Restoration of auditory evoked responses by...

Marcelo Rivolta - Curing Deafness - News Short...

Deafness - The Search for a Cure - Rivolta...

Marcelo Rivolta's Acoustic Recovery Model...

Progenitors are the weapon that will eradicate this disease, drugs are childs play when compared to the power of the stem cell.

Heres the paper

https://drive.google.com/file/d/0BypRsfCr5rIQd2ItbHFzYmM2cXM/view?usp=sharing

 

A member of my family is an animal rights activist (a female ) I wonder when she watches someone close to her suffer if she will still disagree with research like this.

 

Well, here's a little rant I think that there's plenty of room to support medical research while still being an animal rights activist.

That is, most of the things we sacrifice animals for aren't really that important, even from a research perspective, and the vast majority of animals which are slaughtered, are for food. I'm a largely unapologetic carnivore, but I still think the meat infrastructure in the industrialized world is absolutely deplorable. I believe that we should roughly double the price of meat in the US, even if that means moving away from it as a primary protein source. I put my money where my mouth is, in that when I buy animal products as a grocery item (including eggs), I pay two to three times as much for them as I would for the cheapest option, and for that price I get eggs from chickens which are allowed to be outside with 100' sq ft of space for themselves, and bacon from pigs that was grass fed on farms and allowed to go outside. Though I have no complaints about my resources, I am definitely not rich, and doing this does impose a limit on the amount of animal products I am able to buy.

That tradeoff is fine for me because I lived for much of my life around chickens and horses, I know that they can feel pain and terror in a way that I can empathize with, and I don't want them subjected to needless suffering on my behalf.

So, I would absolutely support animal testing of a tinnitus drug even though it means doing pretty terrible things to some animals, and if it were my job to personally perform that terror, I'd like to think that I'd be able to do so. But, I try to be realistic about this.

I get that lots of people who consider themselves to be animal rights activists are not particularly realistic about this, but I think that's okay: the people who profiteer from chickens as a bulk commodity, for instance, also do not have a very realistic view on the suffering involved (and if the CEOs had to personally push the button and watch while each batch of unwanted male chickens were crushed to paste while still alive, I sort of doubt the current paradigms would continue, but sometimes I underestimate cruelty).

Anyway, I'd just encourage you to not paint rights activists with a wide brush. I believe that there is room to advance the state of research for serious conditions, while also advancing the comfort of the average work animal in the country.

I also find this statement a little objectionable as a male, because you seem to be implying that men on the whole are more willing to mete out pain and suffering. Please don't paint me with a wide brush, either.

Also, I'm making a value call, that for me the well being of another animal is not as important as my own. The end result of that kind of thinking is unpleasant and messy, and therefore having a balance to that viewpoint is essential to not spiral into really hellish things. That is, I think it's incorrect to suggest that people who do not share this viewpoint "do not want to recover"; perhaps they simply do not put a higher value on their own well being over the well being of an animal, to feel that the tradeoff is worth is. That's a personal moral decision. Things die all the time, it's the way of the world, but having something sacrificed on one's own behalf is something which is less and less necessary as technology marches forward, and if some people are more content to suffer themselves than to have vivisections performed in their name, that's their own business.

I would seriously challenge anyone to go watch vivisection and slaughterhouse videos for a couple hours straight, and not at least reflect on these issues in a new way. Do you know the terror and pain you experience when you feel stuck with your tinnitus and unable to escape it? Have you ever seen the terror and pain in another mammal while its life is ended in a way which is brutal, messy, and not especially fast?

 

"implying that men on the whole are more willing to mete out pain and suffering" No, Believe me, I am well aware of matriarchal behaviour that can easily match any wickedness a man may deliver. I was merely pointing out that men are the only people that are looking for a rope to get out of the hole we are in, the women (at least the ones I have encountered on the social media) only want to give out pillows and talk about it. Feelings are not what will stop tinnitus, we need to think and act our way out of it. I am not going to respond to the rest of your message as I would like to stay on topic, but I did read it carefully.

 

I see, that makes sense. I do think that women often communicate differently, and are more inclined maybe to look for empathy rather than solutions? I'm only speaking from my experience with my wife, but often times when she presents me with a problem she has, I immediately want to try to fix it, and she's not looking for that, she's looking to be comforted.

That said, I've encountered a number of women in the professional world who are hell-bent on trying to find a solution for tinnitus, people who do research or work as audiologists. So, some of this might be a reflection of the way people express gender roles on social media vs in their day to day life? I don't know, it's an interesting question!

Sorry for the tirade about animals; I guess it's a touchy subject for me

 

Are u sure Danny? Because, when ppl do not came back to report results of some treatment in 70% it is because they are feeling lot better and do not want to come back here, even for feedback. So if u are sure that people are trying it, ti might be work!! dont u think?

 

Jeff, hair cells restoring is realistic thing, they have done it to the kids in 2012. with great success. Injections with steam cells direct in the the cochlea in inner ear.

Just look http://abcnews.go.com/Health/Wellne...lls-restore-hearing-toddler/story?id=16750718

And it stoped? Why? Industry of hearing adds will be destroyed if this becomes common treatment...and that industry is still enough mighty to stop this...My opinion..

 

Animal rights is a complex topic with soundly reasoned philosophical underpinnings. Maybe the people you refer to simply have read and investigated the topic in depth and have come to the entirely justifiable conclusion that current uses of animals (such as vivisection) are based on hypocritical philosophical foundations. Maybe they also then have the courage of those convictions rather than taking the selfish view that they are desperate to get better whatever the moral cost.

Apologies for seeming argumentative, but the gender stereotyping you employ here is inaccurate as well as being a little offensive, eg.:

http://theneuromodclinic.com/our-clinic
http://www.nottingham.ac.uk/medicine/people/deborah.hall (Check out her full list of publications!)

I have encountered several other women involved in tinnitus research, both personally and in my reading on the topic. These are just two who sprang immediately to mind.

 

Well, we won't know sadly if they don't come back and tell us. To date no one has.

 

This is relatively cheaper than 10 sessions of rTMS would be; I'd consider trying it if I could get one but alas, not in the US.

 

I am not going to regulate my comments to pacify gynocentric politically correct thinking people. I can only give my own perspective (as such I will admit it is inherently subjective being of course my own experience)
It is a shame you take offence, but please remember I am only about accelerating treatments to clinic for sufferers. The patient body has a responsibility to provide a moral hazard for researchers who engage in pointless investigations. There is lots of research (or at least it appears there is) and yet little to no yield in the clinic, so I think we should all be kicking up a little fuss.

 

I agree, look at this, came across it a while back

 

Sure, by all means give your perspective but you have to expect that others may point out where it draws on an inaccurate generalisation or prejudice. No offense to you personally.

I think the process takes as long as it takes, and nothing we write on forums is going to change that (although I guess it makes us feel better ).

If you have some kind of initiative going on outside of posting on forums (I'd be interested to hear about that) then my guess is that it might be best not to alienate female researchers with chauvinistic comments.

 

I am getting to the point that we like the current situation . We like being sent home with the explanaton that nothing could be done just go home and learn to live with it. We enjoy not living but just existing. We enjoy being suicidal. We enjoy complaining each other because no one else can understand our pain. We like the current situation that T is not taken seriously by the medical community. We enjoy the fact that the government is not doing anything about awareness or to recognise this condition as a serious hence not spending any money for research.
If we don't enjoy we would have done something about it we would have change something. We have the power to change the situation. If we leave the thinks how are now after 100 years ATA and BTA will still sell their maskers and "give support" believe me. How many of you are ready to reveal to the world for our existence?
Sorry i am getting out of topic but can't handle it anymore.

 

10 sessions 300 euro ... they only make us pay a fee needed to have an employee to give the treatment. How about that ...

 

God, I could literally fly to belgium and do it there for less money than it would cost to do this up the road from where I live. That's depressing.

 

I understand.

 

Couldn't agree with you more!
I just can't understand that millions and millions of t sufferers are doing absolutes jack ass about this "made in hell" condition!

But maybe we should start another thread and throw in few ideas!

 

Absolutely let's start something, let change the game. There is World AIDS Day why not also World Tinnitus day. Tinnitus also kills. It all depends on us. Any recommendations I am open 24/7, 365. So nobody should commit a suicide for this stupid noise anymore.

 

I think we need to to display a "presence" to the research arm directly.

 

Jeff, who wrote this, and where? That is exactly what I think also!

 

I don't know a great deal about this stuff, but I would guess that scientists only have that incentive to drag their feet when funded by public money, eg at a university. But in my imperfect understanding, university research will most often tend to be funded by grants or awards of a fixed amount, so in that case there is less incentive to procrastinate.

Where we are talking about private sector research - drug companies, Mutebutton, etc, then I would imagine they are incentivised not to waste time, since they will have managers focussed on getting results. And unless the company in question is actually owned by a hearing aid company I don't understand how those companies could slow the research. They could try to fund alternative research discrediting promising ideas (see LLLT) but if, for example, Mutebutton has faith in their own product and proceeds methodically then they can get that product to the market, as indeed they are doing.

I'm not trying to dampen down any enthusiasm for some initiative to encourage progress since that sounds a good idea. I just think it is necessary to have a clear idea of what we are objecting to or aiming to influence. Research at this level is presumably complicated and takes time. And a lot of the barriers slowing down progress are there to prevent potentially dangerous treatments being inflicted on the public, the classic example from history being Thalidomide.

I think there is probably more to be lost than gained by taking an indignant/belligerent attitude toward the very people who are actually working on a treatment for this thing. My guess is that you don't get to that position without being a fairly dedicated professional who is focussed on building a successful career by working effectively and getting results. That is only my guess though, and if anyone has evidence to the contrary (as opposed to speculation) then they really should put it in the public domain.

 

Hi All

I am a new member to this forum and fairly new to acute Tinnitus. I have now had T for just over 3 months and like most I am sure been seeking a quick fix. In these 3 months I have looked at existing and volunteering for trials such as AUT00063 only to be rejected as not suitable.

The main reason for my first post is to discuss MuteButton. Even though I am UK based I decided to fly to Dublin and meet with Caroline Hamilton to discuss their device. Following my assessment with her I was accepted as being in the sweet spot for the device (unlike some others who have commented on this thread). I therefore purchased device and only have had it 6 days, so to early to say how effective.

What I would say is that Neuromod pushed back on my first attempt to meet with them and suggested I give it 2-3 months using aids before coming over to see them. I therefore did wait and after trying sound enrichment I connected them again and they agree to see me.

I know some will say that MuteButton is still unproven and agree it early days for this different approach to T. However Caroline was excellent and made it very clear that MuteButton is not a guaranteed fix and reactions to the device have varied but in a majority of cases it does have a positive impact on T or its habituation. Not at any time did they seem overly eager to sell me the device without me understanding the possibility it may not work.

So what has the last 6 days produced. In honesty my T is still like a rollacoaster ranging form very loud to hardly noticeable. I am not expecting an overnight change but the initial reaction to using MuteButton is my quality of sleep. I do my 30 min treatment before going to bed and after that I feel more relaxed to the point I have been able to stop taking sleeping aids for the last two days.

I will keep posting to provide updates on MuteButton but my experience so far is that Neurmod are not out to sell this for the sake of it and are honest and diligent about who this device is sold to.

Last general note this forum has been a great help to a new T sufferer who was going mad at times with severe depression and anxiety.