How Is It Actually Going For ATA?

The American Tinnitus Association, and many Tinnitus researchers have been around over 40 years, how much money have they had over the years?
It's sad that there is not a single proven treatment to help Tinnitus?

 

id guess half million veterans comming back from two recent wars, not to mention an older conflict, have T

if we could get half that, half million to give 5 dollars each year, that would be a big pile of research money for ATA etc

 

Hi,

ATA has been around for many years and what i can read they have supported over 140 last 20 years. Now I'm really curious how is it that no one has been able to find a cure for over 140 latest research done. Also I'm not able to find any treatments that can relief of these 140 studies. Anyone has suggestions?

I have also seen their roadmap to the cure and a lot of research has started in 2008 where in step A all studies were supposed to end between year or 2 and i cant find any result on those.

How is it actually going over there with that roadmap.
What do you think? Will ATA be able to find anything, or is it standing still on their side?

 

nookie -
You are very insightful. I am also critical of the ATA. I have written letters to the ATA, asking them to change their approaches.

There are researchers out there who are so smart they understand about 95% of how the auditory system works. A new edition of a book, "Principles of Neural Science", 5th Edition (1700 pages!) has unprecedented details of the auditory system. Are members of the ATA knowledgeable about this stuff? Or is it cutting edge knowledge that many doctors are not aware of yet?

If anyone is to cure tinnitus, my money would be on top level researchers who understand neural networks. Researchers like the ones who wrote this book. The ATA needs to seek out and utilize people with that type of talent, who understand all this brain stuff. These are people who are so smart, they know how to model the auditory nervous system with computers. It's engineering applied to medicine.

Otherwise, if the ATA continues using the same approaches it has been for the past 40 years - yet another magnesium study, and yet another study verifying that hearing aids make tinnitus more tolerable - they will get nowhere the next 40 years. Athough ATA members are positive and well intentioned, there is the possibility the organization has become contrite and too diplomatic, honoring its members with yearly awards....for what????

Sorry, but I am very cynical. I have written some serious letters to the ATA and its scientific committee to determine "Step 1: The Cause of Tinnitus" in their "Roadmap Towards a Cure". In my letters I mentioned the above, about using neural network modeling. That's the only way to fix this thing.

We should all be very mad about this, because I see that tinnitus can be figured out ....using the right people.

 

There are a lot of researchers working on tinnitus. Having read sooo many research articles, I can say that progress IS being made, but just not much traction. It's not an easy problem to say the least. Mostly because its a brain based symptom, and there aren't a lot of therapies that target the brain not just for tinnitus but for a lot of other conditions as well.

From what I've read, research funding is decided by a panel made up of leading researchers in the field. I am fairly certain they want a cure just as much as we do and would distribute money to where its most needed. I don't think the ATA will find a cure per se, as they don't carry research of their own, they just fund them.

 

Meecat -
Hope you're right. It's a tough problem, for sure. The only really big tinnitus research news I've read about are the new MEG/MRI scans.

I remember when John F. Kennedy announced that America would put a man on the moon by the end of the decade. I think the same thing could be done with tinnitus: A cure can be found. It's only a matter of "how much pressure they put on gas pedal" ($money$), and more importantly, using the best minds.

Success won't automatically be achieved by throwing money at the problem or drawing a "Roadmap To A Cure". For example, when France attempted to build the Panama Canal, they failed because they used the wrong approach, resulting in the deaths of 50,000 French workers from malaria and yellow fever. America was able to build the Panama Canal by flooding a large area to create a lake. Ironically, this idea was originally proposed by a French engineer; but it was discarded because he was unpopular on the planning committee.

Making these critical decisions is the responsibility of the policy makers who fund research. ATA is a big player in this narrow field, therefore it is important how they decide to approach the research which they fund.

 

The ATA is woefully underfunded and so is tinnitus research for that matter. The ATA have been around for 30 years, put $5 million into research and we still are at square one (for the most part trying to identify where T originates). The $2 Billion spent on the Presidential Campaign would have cured tinnitus but that kind of money will not go into tinnitus research at this time. There is more progress today then 5 or 10 years ago but still at a very slow pace. I am more optimistic that a successful treatment will be found rather than a cure. Not many medical conditions today are cured, especially those neuro based. I am not sure what kind of treatment, whether it will be a drug that can suppress just the T or some type of cranial/auditory/magnetic stimulation to "calm down" the neuro pathways but I believe that is where the next advance in T treatment will be.

 

This is starting to be very interesting discussion.
I also feel that the progress is very slow. But what is important that tinnitus in general cost U.S 1 billion dollars/year.
If they would invest those money in research we could find a cure within year or two.

As Karl is saying in this case right people need to be put in place when it comes to research.
I'm sorry to say that so many people are getting affected by tinnitus but in one way i'm really glad for this. That's the only way tinnitus will get attention and a cure will be found fast.

I hope they find something Erik, because up to date they haven't found anything if we are going to be honest. You read every day this might work, that might work. This might be root cause. I don't care about a root cause for my T, if i miss an arm, or my nose points in one direction the main thing we have all same symptom. Focus on that instead.

It's really amazing, because this sympom is costing goverement huge of amount every year and they don't realize that. I'm just tired of all progress going slow, and for me when it comes to ATA and when i look at their result for last 20 years, i hardly belive they will be part of any cure here.

 

nookie -
I'm not sure how much tinnitus is costing the government, but it is impacting society.

I think the ATA is scrambling to present new forms of treatment, such as Serenade Soundcure, which they originally funded. Also the new "Microtransponder" device is jumping into the scene, fueled by investor dollars. We'll see how effective those devices are in the next few years.

Seems to me, that with tools like the MEG/MRI scans which can locate the site of tinnitus excitation, minor brain surgery could fix it. A little hole in the head, a little localized zap on the brain, and "Voila'!", no more tinnitus. ("It's alive! It's alive!")

Any volunteers for brain surgery here?

Let's see how else we can fix it: Hmm....nanosurgery? Stem cells...? ...An injection of something like lidocaine, but without the bad side effects of lidocane?

 

Well I'd be willing to lose a chunk of grey matter to get rid of this noise.

 

I've already lost a chunk of grey matter and I still have T

 

Every industry, including this one is fueled by nothing else but profits, sadly.

This is why most medical companies will not spend millions of dollars to research any novel approach to the tinnitus treatment. It is always safer and cheaper just to create a new hearing aid-type device or a new gingko based supplement. These may not be very effective, but they have been around for a very long time now so I guess it is easier for new, similar products to get approved and enter the market.

I do not really hope for a tinnitus cure. I think the cure for us will be a "by-product" from a much better funded stem cell research. Scientists trying to create new organs for terminally-ill patients, restore lost limbs, tissue, etc. I think they will be the ones to bring us relief from T. Unintentionally but I do not mind

 

Sorry to hear about that Erik x

 

Sadly I have to agree with Fish that the only cure will be from some research that was non-tinnitus related. I can see most efforts going into creating a pill to suppress the noise, as that for any company would be the cheapest and most profitable in the long run.
Look how much money is thrown at so called cancer research. An investigation was done a few years back to see how many company's are actually working on a cure that are funded by the cancer society and it turned out there were none. All funding was put into suppressing the further spread, but never alleviating or preventing the cause.
I agree with Karl that in the end the right people need to be in the right position to properly make things move ahead.
Great discussion though. Thanks everyone.

 

140 papers is actually a pretty low number. A proeminent tinnitus researcher said they were only 300. Tinnitus sufferers are pretty bad at financing research. I read a lot of whining but when it comes to giving to the ATA not much is done. Like if other people had a sacred duty to come to our help while we sit on the sidelines.

There has been a lot of mediocre papers on tinnitus but it seems now much more neuroscience is done. The two leading researchers the ATA interviewed recently are a neurologist and a neurosurgeon. The last "textbook of tinnitus" has a good chunk of neuroscience in it.

But the knowledge of researchers percolates extremely slowly amongst physicians. I have a strong feeling most physicians are unable to do a simple pubmed research or even understanding its results. Look at all the physicians who believe in homeopathy. It shows that in spite of their numerous years of study many of them don't understand high school level physics.

On the other hand look at the TRI. Founded by a rich tinnitus sufferer, it finances many studies, conferences, books, experiments. Someone did put his money where his mouth is.

 

I feel all your pain. Lets hope soon we can find some help, we are all in gods hands at this time.

 

Sorry to hear that ERIK,

Was it a surgery?

Stay Well Man! We will al get through this.

 

Waldo wrote, "Lets hope soon we can find some help, we are all in gods hands at this time."

-----

id feel a lot better about the chances for devine intervention if i knew God had tinnitus



hopefully God has a sense of humor......or im in big trouble

 

Very unimpressed with the ATA.

They dont reply to my emails, I have given up on writing to them.

Seem worse than useless to me they are actually hindering progress by funding useless research. And the funding typically comes from those with tinnitus.

 

So if one were to make a (relatively small) donation, where is it best directed? ATA or TRI?

 

I agree with you . THe ATA after 40 years has produced not one tiny benefit to sufferers to help relieve their daily suffering and improve the quality of their lives. I also am tired of their Magnesium studies, their sound therapy studies and numerous other studies that seem to just be "going on in circles" or reinventing other ways to come up with useless results.

I've donated to the ATA as a sufferer several times now, but now find myself asking whether I should send them anything anymore. THey have not come up with anything. Not that we are asking for an immediate cure, which we hope for soon, but geeze, you would think after 40 years by now, you would have at least have found a way to decrease the loudness of Tinnitus for everyone and not just the too often "70 out of 100" lucky participants from the ...."snake oil" sound therapies.

Is it possible that the ATA is out to survive and therefore are interested in their "going concern" more than finding solutions for sufferers? Thier road map as you mentioned above seems to be outdated and not kept up. Their website offers no real help other than downloadable masking sounds. Even their coping strategies seem weak and pointless, but offered due to lack of website content.

Yes, I am frustrated as all of you are with the ATA. I think they need to stop spinning their wheels and find solutions now. As you mentioned above. If the ATA is going to offer awards they should be for real solutions that help sufferers today, and not for some members efforts at research where no solutions have yet been proven. That is like me getting an award for showing up to work. The award I get is when I comeup with real solutions that have already been implemented and not just talked about over wine and cheese socials.

 

Viktor -
My opinion about the ATA hasn't changed. I see "nothing on the radar" that would indicate the ATA is pursuing neural simulations of the auditory system. I'm convinced that neuro-scientists using computer simulations of the auditory system can solve the puzzle of tinnitus. It's a complicated system problem that's well within the reach of current science - but it requires scientists with unique skills, people who are out there but may be hard to find. The ATA should seek out brainy neuro-scientists who can actually accomplish something. That may require a change in the way the ATA operates!

Viktor: I recall that you once wrote that the US military is working on a cure for tinnitus. Have you heard anything more about that? I also read about this in a Scientific American article that appeared last year. Something about developing a medicine that can be delivered directly into the ear?

In my opinion, the most significant research in tinnitus has been by Pawel Jastreboff, done years and years ago. I keep refering to Jastreboff and Hazell's, "Tinnitus Retraining Therapy", which is a real pleasure to read. It provides a framework for understanding tinnitus which provides me hope for living with this thing.

 

I too am not a big fan of ATA. Don't really see much progress. Many of there listed studies have no updates or even results even from some that were completed a year or two ago. They only get a 1 star out of 4 on Charity Navigator which rates charity organizations which basically means they are not a good organization to donate to.

 

Interesting to read about the ATA. Here in the UK it's pretty much the same situation with the British Tinnitus Association (BTA). They make all kinds of claims for their research but when you look at it, the only thing they are "investigating" is "management counselling". Not necessarily a bad thing in itself of course but hardly original or innovative. As indicated on here the TRI is probably the research organisation to donate to - if you happen to have any spare cash of course!

 

Oh yeah, they are all into 'management' in this country - the BTA and the NHS. I've yet to find somewhere in the NHS that even gives TRT - the only plausible 'management'. They wont even give you a Sound Generator on the NHS where I live. Yup, not even a £50 sound generator. All they are capable of doing is telling you that everyone can hear noises in a silent room ergo everyone has tinnitus. That is honestly their premise. So, that's where we are with a treatment path in the UK - 'Everyone has tinnitus so deal with it'.

 

Karl! Nice to see your post. And a new pic - suits you better than the pic of the old guy

There are brainy neuro-boffins out there as we know. So why haven't they gotten together even without the aid of the ATA?

I too have wondered about why Viktor said previously about the boffin that thought a pharmaceutical treatment wasn't far off. Please update us Viktor?

So..... you've swung towards Jastreboff? Isn't his main theory that its the over-sensitisation of the auditory system, mainly caused by anxiety, that leads to the persistence of T?

 

Louise -
Yes, my current avatar is Jeffrey Hunter as Captain Pike in the original STAR TREK pilot, which became the two part "Managerie" episodes.

(For you Trekies out there, I had planned to eventually change my avatar to Captain Pike's picture after the crash:

​

...However, this may be a bit too strong to show on a regular basis. )

About the brainy "neuro-boffins": Lately I've been downloading papers about the efferent nerves in the auditory system. (Why: I'm of the opinion that tinnitus is caused by a voltage on the efferent nerve leading back to the inner hair cells). To my surprise, there are people out there who know just about everything possible about efferent nerves....in disected laboratory mice, that is. There are people who actually work for a living, disecting mice, determining how all these nerves are connected, hypothesizing the function of brain organs, etc. These people are extremely bright, working at places like Harvard, MIT, Rockefeller University. I actually downloaded a 35 page MIT paper about efferent nerves.

Here's what I think the problem is: Many of these people are perpetual students, who are interested in discovering how the body works, but aren't working on a cure for tinnitus. I don't know who's paying for them to do their research, but they are happy studying and disecting mice, writing papers which appear in "Nature". They may not be the same type of people who are interested in applying science to find a cure for tinnitus, but I have no doubt they can do it.

They need guidance. Somebody needs to approach these mice guys. Somebody has to act as a project manager and tell one guy to "do this" while the other guy "does that". Crank up the super computer, "Watson" at Rensellear Polytechnic, and put it all together.

The ATA, and other professional organizations, needs a big-picture person who can manage these brilliant geniuses and make decisions. Somebody needs to start with "What is the cause?", then go on to the next step. But the ATA can't even answer "What is the cause?" They're too diplomatic.

About Jastreboff: I am constantly impressed with his book. I've been re-reading parts about hearing aids and tinnitus, for example. Jastreboff and Hazell have the whole psychological aspect of tinnitus covered. It's the neurological cause of tinnitus which I think that no one has officially determined. I can't accept some ideas about "spontaneous" neurological emmissions. Tinnitus must be a specific fault in the auditory system.

 

Gosh, I'd be really good at ordering those Mice-men neuro-boffins around! They just need their minds concentrating for them.

I've had the JST book since the beginning of this thing. I remember feeling comforted by the first chapter and then didn't go back to it. I really must.

Still like the original avatar better