Tinnitus Awareness/Research

[cullenbohannon]

Hey all, hope everyone is doing well. Many time on this forum ive seen people talk about how they are un happy with how tinnitus research is being conducted or that there is not enough done about tinnitus awareness. So in this thread i was hoping we could brainstorm a bit on how we could go about changing these things. We have almost 5,000 members, this gives us a lot of voices, but we have to make sure we are heard. Maybe somehow getting more involved and fostering relationships with other tinnitus support groups, and the ATA and BTA. By writing letters to them and to members of our governments, or what ever else you might think of.

Im looking forward to hearing all thoughts and ideas.

 

[jss]

I feel that the US Government is to partly to blame, spending millions and millions on weapons designed to destroy others but not even spending a fraction of that to research funding to help the courageous soldiers that are debilitated by tinnitus in which they caused.

I would imagine like any corrupt political process we would need lobbyists to bend the "ear" of congress. How is this accomplished? A very wealthy corporate entity who has a vested interest in a cure for tinnitus. As of now that person or entity does not exist....sadly. If Bill Gates or Oprah suddenly found themselves in the throws of severe debilitating tinnitus our world would change in an instant.....

 

[Floyd Mayweather]

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. I'm sure they can make a huge difference.

 

[Grace]

Hmmm well lets see, a retired president will make 400 something thousand dollars a year for the rest of there life... A house/senate will make 174,000 a year for life, speaker of the house makes 223,500 for life,majority/minority leader 197,000 for life...... And the saddest part yet.... A us soilder deployed in AFGHANISTAN 38,000 ---- a human being that puts there life up for stakes, gets injured- T/ear related and has to live with it the rest of there life. Thats what should be written to congressman. Its disgusting.

 

[LadyDi]

I know it can seem daunting: but the truth is, we all can make a difference. @cullenbohannon was saying on another thread he went back to where he went to university, on the day when they sign students up for clubs and activities. He was handing out ear plugs and telling them about tinnitus. If each of us here at TT pledged to work with our health departments or hearing associations, to stand outside concerts and hand out brochures and ear plugs, to volunteer in schools... yes, it would make a difference.

I know, this is about prevention, not funding for research. But we have to begin somewhere. We are not celebrities, but there is much we could do. Look at what @Markku has accomplished. Maybe others would follow if we would lead.

And yes, @Grace, we all should write to our elected officials.

 

[billie48]

It might be hard to move mountain on government. They deal with national budget and tinnitus will remain a small or unknown item unless the medical/heath authority are sending the right signal to the government about how tinnitus can devastate a person's life and health. It goes back to the doctors who are in contact with the tinnitus patience. If these doctors are not trained to face tinnitus as a real threatening diseases, how to expect Congress to listen? The medical community needs to be converted before the government head honchos will believe us.

 

[Grace]

I know it can seem daunting: but the truth is, we all can make a difference. @cullenbohannon was saying on another thread he went back to where he went to university, on the day when they sign students up for clubs and activities. He was handing out ear plugs and telling them about tinnitus. If each of us here at TT pledged to work with our health departments or hearing associations, to stand outside concerts and hand out brochures and ear plugs, to volunteer in schools... yes, it would make a difference.

I know, this is about prevention, not funding for research. But we have to begin somewhere. We are not celebrities, but there is much we could do. Look at what @Markku has accomplished. Maybe others would follow if we would lead.

And yes, @Grace, we all should write to our elected officials.

I just really dont think handing out ear plugs changes peoples mind... They dont have T they dont care most of them will say the hell withit... Everyone hates going to clubs/concerts with earplugs.. People like it loud. Unless there was all of a sudden a big epidemic where every other person was getting t. Not trying to sound neggative but this is reality.. I have a friend who works at an airport and brings jets in and refuses to wear earmuffs cause there "uncomfortable".

 

[bwspot]

One must get T to become aware. That's how stupid we people are. Of course, there are some that protect themselves but not that many healthy ones. Stupid reality.

 

[cullenbohannon]

Many friends and family members of mine have started to protect their ears at loud events after hearing about what i went through. Ofcourse were in no position to hire celebrity spokesperson or lobbysists, but i do think its crucial we find a way to make our voices heard, @LadyDi has some good ideas. I don't think were gonna change the world or anything, but if we don't put more effort into these things then why should anyone else.

I know many of us are angry that people dont take us that seriously, and that wont change unless we have people who are willing to put in some effort to make themsevles heard, unfortunately no one else is obligated to speak up for us or fight for us. Thats up to us.

I know tinnitus is not a sexy disease, but i think we have to work with what we have, which millions of people affected worldwide. Anyway just thinking out loud.

 

[jss]

Just a simple public service announcement on it would do wonders. They are easily produced. Here in the US we are bombarded by PSA about the dangers of drunk driving, smoking, sexually transmitted diseases, fire safety, buckling your seatbelt, and the list goes on, but not one on the dangers of loud noise exposure.......? Many get free airtime. Getting a PSA about the dangers of loud sound exposure would be a start. Why companies who manufacture hearing aids like Starkey, Unitron and Widex who have deep pockets don't advertise sound safety is simple. They NEED hearing loss to survive....see how the system works. I feel the ATA's is the only "legitimate" source in the public eye to produce a PSA and they have the celebrity power to do so. William Shatner is the man for the job.

 

[valeri]

@Markku

I'm not sure if you are the right person to address but nevertheless, as a director of this board I hope you may be able to help.

My question is not only for you but for anyone else who is willing to participate.

So the question is:
What we, as TT members, can do to push for more funding towards t cure, what can we do to rise awareness, what can we do to finally get our voices heard?

It's an unfortunate truth that we are left on our own, it's obvious that people with influence are doing zilch to help.

I would like to hope that the purpose of this board can go beyond supporting each other, we need more than a place to vent.
This board is loaded with smart and highly educated people whose skills, for sure, could be used to get things moving.

Does anyone else think that we could do something bigger than just support each other.

Any suggestions are welcomed!

 

[valeri]

Sorry I didn't realise there was a similar thread already

 

[Markku]

Does anyone else think that we could do something bigger than just support each other.

Maybe consider @LadyDi's suggestion;

@cullenbohannon was saying on another thread he went back to where he went to university, on the day when they sign students up for clubs and activities. He was handing out ear plugs and telling them about tinnitus. If each of us here at TT pledged to work with our health departments or hearing associations, to stand outside concerts and hand out brochures and ear plugs, to volunteer in schools... yes, it would make a difference.

I like this idea of mobilizing people at the grassroots level.

We can't possibly change things overnight, and starting small will probably yield better results than forever thinking how cool it would be to have all the celebrities on board campaigning for the cause.

Because fact of the matter is that since the inception of tinnitus communities, people have talked about getting celebrities to step up. Or how the government is failing us.

It doesn't take much effort to be an armchair critic, but how many are willing to go the extra mile and actually put their money where their mouth is?

Seeing as you are in Australia, have you tried contacting the Australian Tinnitus Association? Could you help them in any meaningful way to increase awareness in Australia?

As for more "what can I do" ideas, there are good suggestions in this thread (and elsewhere in the "Fundraising & Awareness" section as well).

 

[jss]

All we need is one celebrity to step forward and endorse a "Cure for Tinnitus" fund.....
Pete Tounsend
William Shatner
Bono
or the best one would be Chris Martin of "Coldplay" who is pretty vocal about his tinnitus.

Sadly if the ATA can't even pull this off I don't see how we could possibility do it without the help of a big celebrity with severe Tinnitus.....sorry just being realistic.

Whoever runs this forum should draft a letter to these perspective celebrities and send it to their agents or press publicists.

 

[valeri]

@jss

I totally agree with you.
This movement needs to go right to the top, to the right person who can make a change.
Yesterday I googled: How to contact will.i.am, or bono, or chris martin.
My idea is to write a letter, it may take many attempts to get a response but we need to keep trying.
So either @Markku can write the letter or some of us. Not sure is our signatures would help, sort of petition.
I will this week contact few TV chanels here in Australia and see if that gets me anywhere. It won't hurt.
As I said before this board is loaded with smart people who day in day out impress me with their intelect. I think it's just a matter of all of us putting some effort in.

Everyone please can we come up with some universal plan and with some joint effort try to get things moving.

 

[Markku]

Instead of one letter, maybe it would help if the celebs received 4000 letters, one from each of our members.

Or not, that could be regarded letter spam.

But I think several well written letters might stand a better chance of getting noticed than a single one.

Just a thought.

 

[valeri]

@Markku
who do you think, out of celebrities, should be number one to contact?

 

[Markku]

@Markku
who do you think, out of celebrities, should be number one to contact?

Chris Martin and Will.I.Am?

 

[valeri]

@Markku

That's what I thought as well.

Will.i.am is too hyper, he's mind goes million miles an hour so not sure if he could be bothered with this stuff, but he could definetly help.
It's worth a try?
Where and how do we start?

Markku I love the saying at the end of your posts, that should be our motto

 

[jss]

Instead of one letter, maybe it would help if the celebs received 4000 letters, one from each of our members.

Or not, that could be regarded letter spam.

But I think several well written letters might stand a better chance of getting noticed than a single one.

Just a thought.

The ATA is the only organization here in the US that actually has some of these celebrity's as members. Whoever runs this forum should start there by contacting Ben Forstag who is the Director of Communications (ben@ata.org) at ATA on our behalf and ask if they would forward a letter to a willing celebrity's publicist. We will find out real fast if the ATA is on our side or if they are not interested in helping the almost 5,000 members here suffering with this terrible situation not to mention all the visitors we get daily. If they offer no help (which I expect) then we need to come up with another idea.

First thing to do is to draft a letter explaining this forum how its growing and how many hits it gets monthly to establish the fact that not enough is being done for a possible cure.

 

[valeri]

@jss @Markku
Apart from writing a letter to ATA or some celebrity how do you all see this being carried out?
Do we need some sort of research initiative established, or association or don't even know the right word?
Logistically this would be a huuuuuge thing to run!
Or maybe my brain is just running like wheels before the cart (nothing new), but would this thing need people to run the show?
Sorry if I'm all over the place, but let's just say we have a celebrity who is willing to help what then?

 

[jss]

@jss @Markku
Apart from writing a letter to ATA or some celebrity how do you all see this being carried out?
Do we need some sort of research initiative established, or association or don't even know the right word?
Logistically this would be a huuuuuge thing to run!
Or maybe my brain is just running like wheels before the cart (nothing new), but would this thing need people to run the show?
Sorry if I'm all over the place, but let's just say we have a celebrity who is willing to help what then?

The best way to start would be a PSA (public service announcement) on the dangers of loud sound exposure
with the celeb, they are usually free. Awareness is the start.

 

[awbw8]

Hey folks There are organizations out there with celeb endorsement from those with tinnitus. Hear the World has over 70 celebrity ambassadors. Hear the World is not just about tinnitus, but it educates about loud noise:

http://www.hear-the-world.com/en/about-us/ambassadors.html

KT Tunstall has tinnitus and has been vocal about it. One of her songs was huge in the US years ago.
http://www.hear-the-world.com/en/ab...erviews-with-our-ambassadors/kt-tunstall.html

As for the grassroots stuff, I think that is the best place to start. Celebrities are famous, but only because people want to read about the sexy stuff. Chris Martin dating JLaw - sexy news, Chris Martin has tinnitus, not so sexy. He will keep being famous, but his tinnitus story will be buried with the rest of the boring celeb news. They would need to shell out warnings at their concerts and that isn't sexy either - then it becomes a question of, "why are you playing your music so loudly that it's going to damage my hearing?" It's a good question, but for someone caught up in the wheel of making $ with loud sound (because we all know loud sound sells - check out how much louder your TV commercials are than the shows), it's a dark twisty path for them to start down. It could happen, but it's going to start with people like us.

@Grace, you're right, a lot of people are going to listen to it loud anyway, but I would have FOR SURE worn earplugs to the concert I went to if I had known. I just didn't know. It would have saved me. For the rest, you can lead a horse to water, but you can't make it drink.

The main thing is to just START. Whatever little thing you're going to do, do it. Start just telling your friends. If you sit thinking about how it all might go wrong, it will never happen. You can't know how a little thing will grow. Look at TinnitusTalk or any other thing that started small. Not the same genre, but if you look at the photo blog "Humans of New York" he was an unemployed, liked taking photos and liked people. He didn't have enough money to go home for thanksgiving. He started taking pictures. Everyone thought he was insane, but now he has bestselling books and fans clamoring for him to get the Pulitzer and the nobel peace prize for his work around the world.

Little things grow, I intend to put my money where my mouth is as Markku said, one baby step at a time. We can do it

 

[Grace]

Hey folks There are organizations out there with celeb endorsement from those with tinnitus. Hear the World has over 70 celebrity ambassadors. Hear the World is not just about tinnitus, but it educates about loud noise:

http://www.hear-the-world.com/en/about-us/ambassadors.html

KT Tunstall has tinnitus and has been vocal about it. One of her songs was huge in the US years ago.
http://www.hear-the-world.com/en/ab...erviews-with-our-ambassadors/kt-tunstall.html

As for the grassroots stuff, I think that is the best place to start. Celebrities are famous, but only because people want to read about the sexy stuff. Chris Martin dating JLaw - sexy news, Chris Martin has tinnitus, not so sexy. He will keep being famous, but his tinnitus story will be buried with the rest of the boring celeb news. They would need to shell out warnings at their concerts and that isn't sexy either - then it becomes a question of, "why are you playing your music so loudly that it's going to damage my hearing?" It's a good question, but for someone caught up in the wheel of making $ with loud sound (because we all know loud sound sells - check out how much louder your TV commercials are than the shows), it's a dark twisty path for them to start down. It could happen, but it's going to start with people like us.

@Grace, you're right, a lot of people are going to listen to it loud anyway, but I would have FOR SURE worn earplugs to the concert I went to if I had known. I just didn't know. It would have saved me and saving just one person from T is huge. What is that quote? "And whoever saves a life, it is considered as if he saved an entire world" something like that.

The main thing is to just START. Whatever little thing you're going to do, do it. Start just telling your friends. If you sit thinking about how it all might go wrong, it will never happen. You can't know how a little thing will grow. Look at TinnitusTalk or any other thing that started small. Not the same genre, but if you look at the photo blog "Humans of New York" he was an unemployed, liked taking photos and liked people. He didn't have enough money to go home for thanksgiving. He started taking pictures. Everyone thought he was insane, but now he has bestselling books and fans clamoring for him to get the Pulitzer and the nobel peace prize for his work around the world.

Little things grow, I intend to put my money where my mouth is as Markku said, one baby step at a time. We can do it

We need freakin commercials about the dangers of hearing damage, like they do for texting and driving. Thats another thing people will never understand, although i believe alot will be more careful with texting and driving then listening about the dangers of loud sound. I want a commercial that starts with a loud EEEEEEEEE and then it can say, this could become YOUR reality if you dont look after your ears.

 

[awbw8]

Hey @Grace, we have those too, people can just share it on facebook, (though I know many do not want to draw that attention to themselves, or think about tinnitus in that area of their lives), but the PSAs exist - just like the one you're imagining:

careful with the beginning of the video - it's a loud tinnitus ringing sound.

 

[Grace]

Hey @Grace, we have those too, people can just share it on facebook, (though I know many do not want to draw that attention to themselves, or think about tinnitus in that area of their lives), but the PSAs exist - just like the one you're imagining:

careful with the beginning of the video - it's a loud tinnitus ringing sound.

Yesss!!! Only if we could have this actually commercialized and put on tv during every popular show! I watch the voice everyweek and always wonder why they dont have commericals like this cause duhh those people are singing which i know they use in ear monitors, but for the audience listening-- they need earplugs toooo to save there precious tiny haircells!!!!!!!

 

[awbw8]

@Grace YES. I think that every time I watch the voice or any other show "Save your hair cells!" Also when I am on the subway and I can hear the music of the person next to me through my own earplugs...I'm like...good lord - TINNITUS. My sister laughs at me because every time a car drives by with the music blaring, or someone is working a jackhammer w/o protection, I am just like, "Tinnitus." It's not a funny condition and that's probably some black humor, but ah well, sometimes you have to laugh.

I'm sure that commercial time is MUY expensive - maybe we should raise money for one prime-time PSA spot

Also, on a personal note, I love your avatar. Every time I see that cat, I just can't help but laugh or smile. What a fantastic feline.

 

[jeannie]

great idea to contact a few celebreties! I wrote to dr oz before but have never heard anything back, but yes if all of us had addresses to write then 4000 or 5000 letters might do something.

 

[Andrew]

Chris Martin and Will.I.Am?

I totally agree with your suggestion with these two @Markku.

I was thinking perhaps celebrities would be more responsive to a charity or independent body as opposed to a number of individuals (i.e. us).

Maybe our approach should be to the British Tinnitus Association (as Chris Martin is British and Will.I.Am does a lot of work here) and then they go forward and approach the celebrities as an established, 35 year old charity seeking support for campaigning for increased investment in Tinnitus research.

By the way if you want a video made, I co-run a professional film company in my spare time

 

[dan]

I want to remind people of something important regarding the BTA.
But first, I wish to ask the members of this forum,
What is the NUMBER ONE priority that most of you would want with regards to tinnitus - all of these questions (and many more) were submitted to the BTA for consideration, to choose the TOP TEN ;

• What management strategies are more effective than a usual model of audiological care in improving outcomes for people with tinnitus?
• Is Cognitive Behaviour Therapy (CBT), delivered by audiology professionals, effective for people with tinnitus? Here comparisons might be with usual audiological care or CBT delivered by a psychologist.
• What management strategies are more effective for improving tinnitus-related insomnia than a usual model of care?
• Do any of the various available complementary therapies provide improved outcome for people with tinnitus compared with a usual model of care?
• What type of digital hearing aid or amplification strategy provides the most effective tinnitus relief?
• What is the optimal set of guidelines for assessing children with tinnitus?
• How can tinnitus be effectively managed in people who are Deaf or who have a profound hearing loss?
• Are there different types of tinnitus and can they be explained by different mechanisms in the ear or brain?
• What is the link between tinnitus and hyperacusis (over-sensitivity to sounds)?
• Which medications have proven to be effective in tinnitus management compared with placebo?
• Are there any drugs that can be studied in animal models for tinnitus? and if so, can it be funded?
• Are there any approved drugs on the market that could be studied for use in tinnitus patients?
• How can we cure tinnitus?
• How can we increase research for a cure?
• We want a CURE!!!
• When will a cure be?
• Can we find drugs to cure tinnitus?
• Can we fund imaging studies for tinnitus?
• Can we invest in tinnitus research?
• WE NEED A CURE
• CURE
• CURE
• cure
• CURE?

I myself submitted a question, thru the BTA's forum when they were running this project 2 years ago...
Here is what the BTA decided our top 10 priorities ought to be, and where your research dollars will be going:

The top ten research uncertainties chosen were:

• What management strategies are more effective than a usual model of audiological care in improving outcomes for people with tinnitus?
• Is Cognitive Behaviour Therapy (CBT), delivered by audiology professionals, effective for people with tinnitus? Here comparisons might be with usual audiological care or CBT delivered by a psychologist.
• What management strategies are more effective for improving tinnitus-related insomnia than a usual model of care?
• Do any of the various available complementary therapies provide improved outcome for people with tinnitus compared with a usual model of care?
• What type of digital hearing aid or amplification strategy provides the most effective tinnitus relief?
• What is the optimal set of guidelines for assessing children with tinnitus?
• How can tinnitus be effectively managed in people who are Deaf or who have a profound hearing loss?
• Are there different types of tinnitus and can they be explained by different mechanisms in the ear or brain?
• What is the link between tinnitus and hyperacusis (over-sensitivity to sounds)?
• Which medications have proven to be effective in tinnitus management compared with placebo?

David Stockdale, Chief Executive of the British Tinnitus Association said, "I am delighted with the top ten research uncertainties that have been selected as they represent a clear focus for future research as well as really capturing the questions that are important for patients and clinicians alike."

Working with the JLA, the process of choosing the uncertainties began in September 2011, with patients and clinicians submitting the questions that they would like to see researched. Over 2500 questions were subsequently posed. A pooling and filtering process then took place removing anything previously researched leaving 393 questions. This long list was refined to 170 by removing those questions selected by only one or two people. These were then distributed within the tinnitus community so that patients and clinicians could choose their top ten. A shortlist was produced from these responses and discussed at a meeting in London on 16 July 2012 where both patients and clinicians finally agreed on the top ten.

The James Lind Alliance (JLA) Tinnitus Priority Setting Partnership (PSP) was led by the British Tinnitus Association (BTA) and the NIHR Nottingham Hearing Biomedical Research Unit.

The tinnitus uncertainties will now appear on the UK Database of Uncertainties about the Effects of Treatments (UK DUETs). UK DUETs publishes treatment uncertainties from patients, carers, clinicians, and from research recommendations, covering a wide variety of health problems.

The top ten tinnitus treatments uncertainties will be launched at the British Society of Audiology (BSA) Conference on 5-7 September 2012. Deb Hall, Director of NIHR Nottingham Hearing Biomedical Research Unit, said: "The outcomes from this project provide a much needed boost to tinnitus research because they identify specific questions for scientists to address that will bring about real patient benefit".

If you would like to read the press release about the top ten research priorities, it is available at www.tinnitus.org.uk/press-releases.