Tinnitus Awareness/Research

[RB2014]

Lets bring this thread back up to the top. I'm taking action:
I started a fundraiser at work and we are contributing to the Stanford Cure for hearing loss.
I'm going to start a thread about awareness on RCgroups asking for awareness and contributions for hearing loss and tinnitus asking them to forward my post to anyone that can help.
I'm going to email the Bill and Melinda Gates foundation and stress how this is a worldwide epidemic and ask them to see if they can support some of these organizations HHF, ATA.
Lets get a few more good ideas.

 

[Dana]

YES, YES, YES, YES, YES, YES, YESSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS!
That's all I can say for now. I don't have others ideas right now because I am too happy about what I just read (with one exception).
What is the exception that I am talking about: if you can ask Bill Gates and Melind Gates to support some organizations, by all means, do it! But not the ATA!
I haven't visited their web site in a while, but let me tell you about how their website looked like almost 7 tears ago, when I got T:
The first page contained only one sentence, in the middle of it, the rest of the page being blank.
That sentence was like this: "Tinnitus. There is no cure!"
That is callled "Nocebo effect", just as effective as "Placebo effect", only in the opposite direction.
That sentence hit me under the belt and made my knees shiver! I am sure that that negative message had a SEVERE impact on my subconcious which is in charge of the body's ability to heal itself!!!!!!!!!!!!!!!!!!!!!!!!!

No more money for the ATA!!!!!!!!!!!!!!!!!!!!!!!!!!!! They don't deserve it!

And one more thing i would like to add: you talk about hearing loss and tinnitus. It sounds like you are talking only about causes with hearing loss and T caused by that hearing loss, which I don't like at all. Tinnitus is an extremely serious condition (I never heard of a single case commiting suicide because they lost their hearing, but I heard about numerous cases that commited suicide because of T, and in the cases of those people who asked to have their acoustic nerve cut as they preferred to remain completely deaf rather than with tinnitus -enough said about the comparison between the two conditions- only to see after sugery that they remained without hearing but their tinnitus continued in their head, only this time it was unmaskable with other sounds, as they remained deaf, the commited suicide in a very short time., that's how "bearable" it was.

So please let's not leave out the Tinnitus of other etiologies (too many to enumerate)

But anyway, congratulations for your initiative, I was going to do something similiar when i got a little better (I am going through a rough patch now).

Congratulations again!
Kudos to you!

@amandine sorry i didn't answer to your private conversation you initiated with me several months ago about the same subject: the need for us, T sufferers to take a stand and unite and do something for us, as waiting in silence for help from others got us nowhere, but i tried to explain that since last autumn my T worsened and I function at 5%, so I can't do much now, for thinking you must have silence in your head, or at least not have noise that hinders thinking, like i do. Sorry again, i hope you understand.

Sorry for the English mistakes, even if i tried to correct them I coudn't, as my reading glasses broke and I am writing this with very poor vision, squiting my eyes to see something.

PS I remained with poor vision after years of taking Clonazepam and Xanax, which causes blurred vision, but i would even take blindness rather than severe T.

 

[RB2014]

Dana, I'm excited also, and you are right, I have been concentrating on tinnitus as it related to hearing loss. Hearing loss affects many many people, and I think lumping the two together is a good idea to get more attention. It seems like tinnitus only discussions dont get to far. I think the latest research on hearing restoration is pretty exciting and will get people researching further. Are there any other organizations besides the ATA here in the US that you would recommend I mention? As far as I know besides them its only the private companies doing research and there is nothing we can do to motivate them further. AT this point I think any research that gets done that involves hearing is a good thing.

 

[Stink]

Dana, I'm excited also, and you are right, I have been concentrating on tinnitus as it related to hearing loss. Hearing loss affects many many people, and I think lumping the two together is a good idea to get more attention. It seems like tinnitus only discussions dont get to far. I think the latest research on hearing restoration is pretty exciting and will get people researching further. Are there any other organizations besides the ATA here in the US that you would recommend I mention? As far as I know besides them its only the private companies doing research and there is nothing we can do to motivate them further. AT this point I think any research that gets done that involves hearing is a good thing.

BTA british tinnitus association is good

Action on hearing loss is another good one (they are hearing loss and tinnitus)

HHF Hearing health foundation is likely the best of all.

 

[Dana]

I also like BTA, I didn't say anything bad about them, did I?
Hearing Health Foundation has a motto that i like greatly: "We need your help to cure hearing loss and tinnitus in our lifetime" Yes, in our lifetime!!!!!!!!!!!! That is a key part! In our lifetime! If not for us, then for our children, who need proper parenting, not a vegetable instead of a parent.

I personally do not believe at all that scientists are anywhere near a cure right now, at least not for all types of T (I know there are types of T that can be cured). I concluded that just by listening how the "latest discoveries" sound. The reasearchers sound actually very far from finding a solution for T or hearing restoration. "Well, how do you know how the latest findings of the researchers sound?" somebody may ask me. Well, I follow the media, and what is made public as the latest findings of the scientists sounds very discouraging for my generation. I doubt they have much more advanced findings and keep them a secret only to surprise us one day, while they release to the media as information from the current stage of research something that doesn't mean much.

• I am in no way saying that those researches should not continue to be funded, God forbid, no way, they should continue to be funded until they know everything they can about the brain, hearing system and the body in general and find solutions to medical problems. I am just saying that i don't think we should hold our breath until they find a solution for us. I don't think that anything significant will happen during our lifetime, that's all, so we have to take into consideration this scenario also, that a cure won't be found for our generation.

Intellectual work can't be rushed, unfortunately. On the contrary, the more you rush somebody who does intellectual work, or put that person under pressure, the more are the chances that that person will make a mistake or overlook something or fail. Thinking cannot be rushed.

• I totally agree that T or hearing loss doesn't get the attention and the research money that it should.
• T is the Cinderella in the medical field. Why?

• Something has to be done for us in the meantime, while we wait for a cure that can very well not be found during our lifetime. I am referring to people who cannot function as before getting T. And I am also referring to people who struggle to keep doing what they were doing before T onset, but with terrible amounts of effort.

• I don't want to hear that the researchers are coming soon with a cure. I thought that an advantage of getting mature is that BS stops. No, not really. If you get T, well, BS resumes!

• When T has a very high level, it is severe, or catastrophic, T is a disabling condition, it's a handicap like being blind, or deaf, or paralysed, etc. But this fact is not acknowledged, sufferers have to hear statements like "T is just a sound" or "Learn to live with it" or "The fact that one has T doesn't mean that he has to suffer from T" or "The level of one's suffering from T depends on his (perhaps "chosen willingly") reaction to tinnitus" and other BS like that. Yes, living with T is possible in the same style as before getting T, but up to a certain level of T! Above a certain level it's a whole different game. (I know that from experience. My T fluctuates, so I experienced all levels, from almost a bearable level to such a level that my own T constituted an acoustic trauma in itself, determining me to shout that I must be put out of this torture ASAP and be transported to some place for immediate euthanasia)

There are millions of people with T low enough that they didn't even bother to pay a visit to an ENT to ask about that, there are millions of people that have T of a level that is manageable and doesn't disrupt their lives and are able to sleep without having to take drugs that turns them into a vegetable, but there is such a thing as "disabling T", and that is an isssue too, that catastrophic T is not acknowledged as a disabling condition and doesn't get the attention the other disabilities get (like being, or deaf, or paralysed, or amputated, etc).
Maybe this happens because T is not visible, that people cannot imagine how it is to have something like that, as they can do when they close their eyes and get an idea of being blind, or cover their ears and get an idea of being deaf etc) or maybe, and i think that's the case, that people with catastrophic T are so tired, so sleep deprived, so weak, that they cannot make any "noise" for themselves and there isn't equipment able to prove their T and their level of T, and even their family members may not believe them how terribly they suffer because of this invisible condition. I know there are some medical devices that could at a certain degree prove the possibility of T and its magnitude, but those devices are not available for everybody. (fMRI, qEEG, Loreta qEEG). (If somebody knows about those devices or other devices that can evidence T please inform me by a private conversation)

• Talking about funding, money must be put into developing devices that can clearly show the existance of T and it's magnitude. I think this is very very important. Those devices would put a stop to the abuse that some T sufferers are subjected to, being accused that they make a big fuss over nothing.

• Why some people think that the musicians with T would help us I really don't know!

It's against logic!Bringing awarness about what the music industry can do to people (destroy them) would be against their interests!
They make/made a living out of that industry, they love it, why would they speak about the dangers that this industry hides?
Ok, so some musicians admitted that they have T, but I don't think they have high level of T, otherwise they would have had developed hyperacusis or misophonia and withdraw from the industry. Those musicians will ever fight and shout about how horrible T can be? Never!

Anyway, I think i vented enough for today, but the conclusion is that we have to DO something!!!!!!!!
WE, THE SUFFERERS, have to do something, nobody without T will stand for us and represent us properly and fight for the rights that we should have, but we don't!
It's up to us!

So far, the T sufferers are "written off", as @Christian78 put it. So true!

The T sufferers are told to shut up and wait for the coming cure. Well, what if it doesn't? What are we supposed to do in the meantime?

• @amandine had a great idea. To go to the World Health Organization! I totally agree with her.

PS If I repeated myself too much, if I was annoying, if i made too many mistakes, please understand and forgive me. I have invasise T for almost 7 years, and it affected my brain/thinking on all aspects. My old cristal clear thinking went down the ....pipes, and now i feel my brain very "foggy". I have only written this because i feel that I had enough!

 

[Dana]

@cullenbohannon Thank you for starting this thread!
@RB2014 Thank you for trying to revive it!

 

[RB2014]

Dana, it was a great post. I will add BTA to the list. I have had T with H at unbearable levels and completely understand that the volume of the T does make a huge difference in the quality of life. My hearing is pretty bad and I have had good days and bad days. I agree that the music artists probably don't have it as bad or don't notice it as much since they are so busy with their daily lives. Once they decide to retire though I think their perspective will change as all they are left with is this sound to accompany them. I still cant believe some of the older Rockers that have come down with this aren't contributing aggressively. If I had money to burn and my T was bad I would be much more vocal and would contribute as much as I could to get research going faster.
I however, am holding out hope for AUT00063 as a solution or maybe the AM101 trials, but if these two don't come through I think its going to be a long time before we see something. You would think that any pill for this would just stop it, like aspirin for a headache. That is what scares me about the trials. I don't think any medicine that works should take 30 days to take affect, but I don't know.
This week my fundraiser will be done, and I'm working on my email to the Gates foundation, and RCGROUPS post. I will add the recent WHO publication on hearing concerns in my email to the Gates foundation as backup. I understand their great work with people in developing countries, but even people in developing countries must be affected by these issues that we all face, they just don't have the support system and/or internet to talk about them.

Even a simple article on Yahoos home page would go a long way if anyone knows how to get that done.

 

[Dana]

@RB2014 I wish you the best of luck on what you started alone, on your own initiative. My respect!
I personally have to stop posting for a while because of very bad health ("big T spike" caused by "stress" caused by "not solving a problem that bothers me a lot" caused by "lack of energy" caused by "not resting properly" caused by "T", the wonderful vicious circle that we all know)

 

[Dana]

@RaZaH said:

I am in the music business , T has been a dirty secret there for a long time.
A professional engineer is not going to tell all his clientele that he has hearing problems.
Also , musicians do not want to tell all their peers as this is the musicians Kryptonite, and no one wants pity.
Musicians have a responsibility here that they have not delivered on.

 

[cullenbohannon]

To anyone who is interested there are teams on TT that involve research and awareness.

Tinnitus Talk Teams — Awareness, Research, Tech, Trobalt

 

[RB2014]

Thanks, I did not realize there were teams. I will look into them.

http://www.rcgroups.com/forums/showthread.php?t=2363196

Here was an awareness thread I started on RCGROUPS on hearing loss and tinnitus. Its getting some response and getting some views. I was hoping for better, but it is awareness.

I was able to send off $60 to the Stanford initiative to cure hearing loss.

I'm working on my letter to the Gates foundation now. Again, I will concentrate on hearing loss and tinnitus. The recent WHO warning on hearing loss will make good support for my email.

After this email, I will continue to search for ideas.

Did anyone see Ralph Johnson's comment on the HHF home page? I thought it was done very well. He is supporting better hearing. All music artists should support better hearing. I think this is a great angle for them and it lets artists talk about the importance of hearing without mentioning the T word to Dana's point.

 

[Dana]

@RB2014

Speaking about incentives for researche(rs): as the letter to the Gates foundation is not sent yet, so it's not too late, wouldn't be a good suggestion in that letter to ask the foundation also to put on the side some money for a prize for the researcher(s) who come with a cure for tinnitus AND a prize for hearing restoration?

A prize much bigger than the Nobel prize in medicine, which is only between 1 and 1.5 million dollars, not very stimulating, as this amount researchers can obtain just by activating with or without results for 10 years in the research field, as I suppose they make the 100,000 $ per year at least.

Even if the researchers don't come with any results after 10 years in hearing restoration, for example, as they talk about, nobody will ask for their salaries back.

A prize, on the other side, is given ONLY if they really come with a solution.
That's what I call real incentive/stimulant!

What kind of "algorithm" researchers used to calculate that about 10 years more are necessary to come up with a cure for hearing restoration, I want to know!!!.
As they must have used some form of calculation of this time frame (in case they are serious), they are the only ones to know if the time frame could be shortened and how.
They are the only ones who can tell if more funding can shorten the time frame or not and how those extra money could help (I suppose in training other people, preferrably under 30, to join the team, as I don't think that if you double a researcher's salary he can get two times smarter or creative, or he can think/work two times faster)

I don't know if the researchers are asking too for more funds or not.
If they don't, that worries me. It's a bad sign.

 

[RB2014]

I sent my email to the Bill and Melinda Gates foundation this morning and we will see what they come back with. I look forward to getting a response from them and will post any information they provide back. I did not get into specifics of what they could do to keep it short, but I did mention that this is a global epidemic and that there are 360 million people with debilitating hearing loss with another 1.1 billion on the way according to the World Health Organization. I also mentioned how hearing loss leads to tinnitus which can be a debilitating condition for many people that can be neither seen nor heard. I feel strongly about this and will continue to come up with ideas.

I'm pretty sure the researchers are asking for funds to continue research and they have mentioned that they are short of them and that applying for and getting grants is becoming more difficult butting down their research time and increasing their time spent filling out paperwork. I think private companies are not in need of funds as they are trying to turn this into a never ending piggy bank for them. I for one look forward to their success.

 

[RB2014]

Sadly enough I did not hear back from the Gates foundation on the email I sent. I am fresh out of ideas. Considering hearing loss and then the tinnitus that follows is a global epidemic I was hoping to at least start a dialogue with them. I'm still open to hearing any ideas any members have.
Possibly if other members would also try, or if there was some way to reach out to musicians so they can support healthy hearing measures instead of using the T word they don't like to talk about.

 

[Stink]

Sadly enough I did not hear back from the Gates foundation on the email I sent. I am fresh out of ideas. Considering hearing loss and then the tinnitus that follows is a global epidemic I was hoping to at least start a dialogue with them. I'm still open to hearing any ideas any members have.
Possibly if other members would also try, or if there was some way to reach out to musicians so they can support healthy hearing measures instead of using the T word they don't like to talk about.

it's been 2 weeks. you expect an answer from bill gates foundation in 2 weeks?

wait 6 months and maybe you hear something... its a big organization.

 

[NiNyu]

I never heard of a single case commiting suicide because they lost their hearing, but I heard about numerous cases that commited suicide because of T, that's how "bearable" it was.

I would even take blindness rather than severe T.

Precisely! I'd rather be deaf than being tortured any longer. When I was in hospital due to SSHL getting drip infusions of cortisone for about ~10 days my left ear went completely deaf. I even had the musical ear syndrome (MES). After seven days the ENTs suggested a tympanostomy with the success rate of 15% that I might get back some hearing. All I asked them was if the noise would go away if I do this operation. They said no. There's nothing they can do about the noise. I just thought what's the point of the operation then? Hence, I did NOT do the operation. Two days later my hearing slowly came back although I can only hear up to ~2400hz.

Funny, I actually thought about that last night. What if I had the choice between blindness and severe T.

 

[NiNyu]

Celebrities like Gerard Butler and Will.I.Am have Tinnitus. They could create awarness about Tinnitus but I don't see them talking too much about it.

Gerard Butler has T for real? Did not know.
But somewhat I doubt that they're having severe intrusive T since they keep on pursuing their career.

You ain't the real Floyd Mayweathe, are you?

@RB2014 , can you show us your letter?

 

[RB2014]

This is what I sent:

As a regular person with moderate to severe/profound hearing loss, I am writing to see if you have considered funding or supporting any of the initiatives to cure hearing loss. There have been many breakthroughs over the past several years and scientists now believe that a cure for hearing loss is within our reach. The World Health Organization estimates that approximately 360 million people worldwide have disabling hearing loss, with an additional of 1.1 billion at risk over the coming years. Hearing loss also leads to tinnitus which can be a debilitating condition which cannot be seen or heard except for the person experiencing it. Dealing with hearing loss and tinnitus has taken a great emotional toll on my life and I consider myself lucky having the means to deal with it. I cannot imagine the pain and suffering that would be endured by someone without the same resources. I am reaching out to the Bill and Melinda Gates Foundation to please look into the work being done by the Hearing Health Foundation, Stanford Initiative to cure Hearing loss, American Tinnitus Association. Anything you could to either raise additional awareness or possibly fund some of the ongoing research on hearing loss and tinnitus would go a long way in providing hope to the millions of people that are affected by hearing loss and tinnitus. Thank you for taking the time to look at my email and I look forward to a brighter future where everyone can hear the same.

 

[NiNyu]

@RB2014 , you are NOT a regular person! A regular person does NOT have severe T. A regular person does NOT suffer from a debilitating ailment.

@Vincent R , @Dana we need your help, your skillset to revise this letter! Please help.

Your very first sentence is about funding without any impact on why that's a no-go! Rather you should explain in detail why and how we suffer, the graveness of your/our predicament, and after that you can ask for money.

Many breakthroughs? A cure is within our reach? Where? What? Did I miss something here?

I just read hearing loss.. and then the first think that comes to mind is hearing aids, problem solved, and then I lost the interest to keep bothering with this letter..

Emotional toll? If I bet and lose on a horse race I might be get an emotional toll here.

What is T ? Uh, yes some white noise that people can only here in a silent room. No big deal. Next letter!

Honestly, if I had read this letter prior to T I wouldn't have given it a second glance nor would I have understood the graveness of this malady. I don't say this to belittle your efforts but we need something profound here. Something that opens the eyes of the non-T society. They have to put themselves into our perspective in order to get a lil glimpse of how much we suffer. Don't write about hearing loss or T. Write about what you feel, how the noise is tormenting you, your emotions etc.

 

[RB2014]

I read a post on this message board from someone that wrote to them in regards to T only, and they got back a response that said they would not support this cause. I thought I would try a different approach by citing the WHO article which makes this a worldwide problem. I read their website and they do not fund research for causes of developed countries. This means they will not support T in general unless it is a global epidemic. Hearing loss leads to T. I'm trying to make that point. Since it starts with hearing loss and there are going to be 1.1 billion at risk of getting hearing loss and then T in developed and undeveloped countries. This would make it a global problem and that is what they try and tackle in that organization.
I completely understand where you are coming from, but a personal plea to fix my T and everyone on this board has already been tried and won't get us far. There are probably millions of people in undeveloped countries going through the same thing we are going through, but without the internet to share, and most without the proper necessities in life. All of this would make T an even greater struggle. That is the point I'm trying to convey.
If they were to respond back, I would gladly elaborate on my personal experience, on the experiences of those of us on this board, and then elaborate on how much more difficult it would be without the proper necessities and care.

 

[NiNyu]

Fair, so they do not fund research for causes of developed countries. Unless it is a global epidemic. Now you pointed out that it might be a global epidemic but without explaining the epidemic. What is T how does it affect people? What is hearing loss? How can you tell that there are probably millions of people in undeveloped countries that going through the same thing we are going through? What's the cause?

Please have a look what @Dana wrote here,
https://www.tinnitustalk.com/threads/tinnitus-awareness-research.6284/page-2#post-98108

 

[RB2014]

I think this problem is much bigger than what everyone thinks and I really think it is a global epidemic. I've told 8 people at work I got hit with chronic tinnitus. 3 of the 8 people said, hey I have that too, but I didnt know what it was and it only bothers me a little. Thats pretty crazy.

Believe me, if/when I get a response back, I'm going to make as strong a case as possible and elaborate as much as I can. From what I have read they are very selective of the causes they take on and again they have to be on an global scale for them to consider them.

I also believe tinnitus begins with some type of hearing loss and that if the scientists can figure out exactly how the inner ear works we can solve Tinnitus. I believe that once the ear is made whole again tinnitus would disappear completely. I also believe it doesnt matter how long you have had it and that it can/will go away once all of these issues are addressed. This is why I concentrate on addressing the hearing loss issue and try to lump it with tinnitus.

They might be able to give us some pill we have to take forever to get rid of it, and I welcome that too, but I think anything they give us is a workaround to fixing the real issue.

 

[attheedgeofscience]

As a regular person with moderate to severe/profound hearing loss, I am writing to see if you have considered funding or supporting any of the initiatives to cure hearing loss. There have been many breakthroughs over the past several years and scientists now believe that a cure for hearing loss is within our reach. The World Health Organization estimates that approximately 360 million people worldwide have disabling hearing loss, with an additional of 1.1 billion at risk over the coming years. Hearing loss also leads to tinnitus which can be a debilitating condition which cannot be seen or heard except for the person experiencing it. Dealing with hearing loss and tinnitus has taken a great emotional toll on my life and I consider myself lucky having the means to deal with it. I cannot imagine the pain and suffering that would be endured by someone without the same resources. I am reaching out to the Bill and Melinda Gates Foundation to please look into the work being done by the Hearing Health Foundation, Stanford Initiative to cure Hearing loss, American Tinnitus Association. Anything you could to either raise additional awareness or possibly fund some of the ongoing research on hearing loss and tinnitus would go a long way in providing hope to the millions of people that are affected by hearing loss and tinnitus. Thank you for taking the time to look at my email and I look forward to a brighter future where everyone can hear the same.

Thanks for your efforts. I don't believe, however, that the BGF would consider such a request; it is not part of their mission statement (they focus on basic needs of the 3rd world countries and span several disciplines such as economic development and disease prevention, not hearing loss).

I see several problems with your e-mail:

1. It is a mixture of objective and personal facts. Stick with the objective ones.
2. Break down your material into several bits/paragraphs e.g. one section with an introduction, one with facts, and one section with "what you want" from them. Your e-mail is one big pie.
3. I am missing the red line through your mail i.e. a coherent flow-of-events. What is it you really want from BGF? In this case you are asking the BGF to undertake something which - to the best of my knowledge - falls outside of their mission scope (the closest topic I could find on their website is "Discovery & Translational Sciences"). So had I written your mail, I would have started by introducing the fact that you know that you are requesting something which is extraordinary i.e. the question to the BGF should not really be if they want to fund so-and-so, but rather would the BGF even consider extending their scope to include other health topics? Also ask yourself (hypothetically): Suppose the BGF was to accommodate your request and hand you $10M on the spot, how could that directly help research in some way i.e. what exactly would you do with the money - who would be the recipient(s), and how could that entity/organization make a difference with it? I am sure that the ATA would appreciate it, but would that actually make a difference i.e. would that "suddenly" speed up progress by a factor of three? I doubt it. What possibly is really needed is to somehow find a way to lobby the current +10 otology pharmas (and corresponding government entities) to grant a fast-track for specific drug candidates, for instance.

The following post of mine contains a sample e-mail I wrote to GSK about half a year ago:

www.tinnitustalk.com/threads/retigabine-trobalt-potiga-%E2%80%94-general-discussion.5074/page-141#post-101671

Again, thanks for taking the trouble to write the Bill Gates Foundation (and sharing it).

 

[attheedgeofscience]

Believe me, if/when I get a response back, I'm going to make as strong a case as possible and elaborate as much as I can. From what I have read they are very selective of the causes they take on and again they have to be on an global scale for them to consider them.

Also, consider this (if you haven't already):

www.gatesfoundation.org/How-We-Work/General-Information/Grantseeker-FAQ
www.gatesfoundation.org/How-We-Work/General-Information/What-We-Do-Not-Fund

Admittedly, hearing loss spans both the developed and developing world (which - initially - leaves a door open according to their guidelines; however: "We do not make grants outside our funding priorities" and I doubt - as stated - that HL/T falls within their mission statement).

 

[Dana]

@attheedgeofscience @RB2014 @NiNyu @amandine

I don't believe, however, that the BGF would consider such a request; it is not part of their mission statement (they focus on basic needs of the 3rd world countries and span several disciplines such as economic development and disease prevention, not hearing loss).

Admittedly, hearing loss spans both the developed and developing world (which - initially - leaves a door open according to their guidelines;

I just read hearing loss.. and then the first think that comes to mind is hearing aids, problem solved, and then I lost the interest to keep bothering with this letter..

What is T ? Uh, yes some white noise that people can only here in a silent room. No big deal. Next letter!

"We do not make grants outside our funding priorities" and I doubt - as stated - that HL/T falls within their mission statement).

Well, condering the above quotes from BGF mission statement and some good comments made above, I think the BGF subject is permanently closed.

Which leaves a petition to the WHO the only thing that we could do that could lead somewhere, as @amandine's original idea was.

WHO has separate sections for different parts of the world, and T is a terrible condition, debilitating in many cases, that doesn't receive proper attention, and if you look at the causes of T, is a condition specific to developed countries (developed, yes, but in the wrong direction, in the detriment of the peoples's health, with too loud noises in working environments, too loud weapons, too loud noises in concerts to entertain us to the maximum, too much muscle tension, ototoxic medications, barotraumas,, firecrackers, bad syringing, explosions, etc. and with too much stress to worsen the T all of those etiologies, not to mention that stress alone is one of the causes of T, according to people' reports that say that nothing happened to them except extreme, extreme stress from this very demanding society (job loss in a difficult job market, etc)

In developed countries T is an epidemic, and according to WHO statute, they assumed some responsibilities regarding epidemics, they supposedly oversee the health of the population. Well, regarding T, they remained behind and I don't think they will do something in this direction, unless reminded by. who else, the ones suffering with T, the others not giving a damn about it.

I see a petition to the WHO written by us as the only way to go.

 

[Stink]

@attheedgeofscience @RB2014 @NiNyu @amandine
Well, condering the above quotes from BGF mission statement and some good comments made above, I think the BGF subject is permanently closed.

Which leaves a petition to the WHO the only thing that we could do that could lead somewhere, as @amandine's original idea was.

WHO has separate sections for different parts of the world, and T is a terrible condition, debilitating in many cases, that doesn't receive proper attention, and if you look at the causes of T, is a condition specific to developed countries (developed, yes, but in the wrong direction, in the detriment of the peoples's health, with too loud noises in working environments, too loud weapons, too loud noises in concerts to entertain us to the maximum, too much muscle tension, ototoxic medications, barotraumas,, firecrackers, bad syringing, explosions, etc. and with too much stress to worsen the T all of those etiologies, not to mention that stress alone is one of the causes of T, according to people reports that say that nothing happened to them except extreme, extreme stress from this very demanding society (job loss in a difficult job market, etc)

In developed countries T is an epidemic, and according to WHO statute, they assumed some responsibilities regarding epidemics, they supposedly oversee the health of the population. Well, regarding T, they remained behind and I don't think they will do something in this direction, unless reminded by. who else, the ones suffering with T, the others not giving a damn about it.

I see a petition to the WHO written by us as the only way to go.

WHO don't give funding. read their site http://www.who.int/en/
no use to try!!

 

[Dana]

@Stink

I wasn't referring at funding. I was referring to the fact that T is not acknowledged as a serious, many times debilitating condition, doesn't even have a "code" in the list of conditions in my country for example, although I am personally debilitated by it I couldn't retire because of T, the only way I could retire would be if I would speak to a psychiatrist to put me some horrible psychiatric diagnostic and retire based on that. Which, of course, would lead to many unpleasant consequences: abuse, mockery, losing my driver's licence, mandatory periods of times spent in psychiatric hospitals and others.

I tried to change my profession, from Computer Science Engineer to a profession to one that doesn't require much thinking and silence in my head, and it won't work.

I payed for all the treatments that I tried so far out of my pocket although I have medical insurance and I had enough.
If a cure is not available now, during our lives, at least some palliation treatments that should be covered by insurance in all countries. That's what I have in mind.

Directives for the medical systems in all the countries to take pay attention and to take care of the T sufferers by introducing T as a serious medical condition (not merely a "mild symptom') and consequently making changes in the way that medical systems and medical insurance companies work.

 

[robinbird]

I have imagined challenging people who do not have Tinnitus to wear some headphones for a week, listening to all the different sounds and volumes that folks with T have to cope with, from a prepared cd. How bout those guys in Congress doing this! I think that would drive home the severity of how T impacts every aspect of a day in the life of a person who is trying to cope. Let's see how their nerves are after just one week of this. Veterans, regular folks, and globally are dealing with this. 130,000,000 Chinese people have it!I think it is the #1 disability now in Veterans. Many musicians have T. They need to get out there and let people know what happened to them because of loud music. I never knew that guy who starred in Startrek was a spokesperson for T. Point being, NEVER HEARD OF HIM OR TINNITUS. Maybe we need to dump a bucket of ice over our heads to get attention!!

 

[attheedgeofscience]

I see a petition to the WHO written by us as the only way to go.

Perhaps see this as a starting point (re: "petition"):

www.tinnitustalk.com/threads/retigabine-trobalt-potiga-%E2%80%94-petition-to-the-ata.6896/#post-77218

Which leaves a petition to the WHO the only thing that we could do that could lead somewhere, as @amandine's original idea was.

There may be other ideas - examples:

1. Government health authorities
2. For the US, the Armed Forces' Hearing Centre of Excellence (HCE) might be a possibility (http://hearing.health.mil/)
3. Hear-The-World-Foundation (www.hear-the-world.com)
4. The EU Directorate for Health and Consumers (I contacted them myself - which can be seen via this post of mine: www.tinnitustalk.com/threads/bta-refuses-to-fund-drug-and-stem-cell-research.6599/#post-72413; I should also add that TINNET is sponsored by the EU (and TINNET is of course headed by the Tinnitus Research Initiative - which is the entity that Team Trobalt has formed a team effort with...)).

But before contacting anyone, I recommend a kind of game plan (incl. the famous "end game" scenario) to be devised - in short: "what is the goal, and how do you want to achieve it..."

 

[Dana]

@whomever might be interested

I would like this aspect of the matter to be solved for all countries, not only for ATA or UE countries, that's why I am thinking WHO, which commands all countries in the UN. (only a few are left out of UN).

After almost 7 ears of intrusive, debilitating T, I gave up long time ago at thinking realistic (too scary!) and I can't accept that I will have this until I die, one way or the other.

I would like to have the option to go on disabilty based on severe T, but for that I have to prove that I have debilitating T. For that, devices that can prove that electrical activity of my brain is seriously affected are needed. If my information is correct there are only two in Europe.

WHO could give directives to governments to build or to buy devices that can prove debilitating T. I am thinking qEEG, of which I know there are only two (!!!!!) in the world, or if not, at least in EU.

T can be debilitating, but a person having severe T is not ackowledged as being disabled. Blind people, amputated, all those people with debilitating conditions are acknowledged, except for severe, or catastrophic T sufferers.

Technology advanced so much, but a bunch of qEEG, with cannot be more difficult to make than a sophisticated phone or a plane for war, at least one for each state cannot be built or bought by governments?
And those debilitated by T cannot be treated like any other debilitated people, we have to procure papers that we are crazy, when we are not?

I find that hard to accept.
I find that outrageous!

And we take this laying down?