Let's Make TV News

[Larry OT]

I have a friend who video edits for ABC in NYC. Im thinking about proposing an awareness and research news piece about Tinnitus.

No guarantees, but if he's up to it...
It just seems to me not enough is being done and awareness is a key element.

Any thoughts on what I can present as options are welcome to raise awareness and promote the cause for treatments and future possible cures.

1) musicians / celebrities who have it
2) severity and consequences of debilitation T and H (inc; anxiety, depression, fatigue, pain...suicide)
3) current research (AM-101, MicroTransponder,...)
4) known causes of it, future hazards with earbuds and hearing loss
5) your personal stories of life with this condition via Skype... if we get to that point.
6) TRT, CBT, and other therapies that have been used and their effectiveness.
7) the need for answers.
8) and this TT community of support...

Any opinions are welcome on this. Its just a thought.

We need better spokes persons:
http://abcnews.go.com/Health/Depression/tinnitus-suicide/story?id=15003057

 

[attheedgeofscience]

Any opinions are welcome on this. Its just a thought.

Any advocacy is of course apprciated.

But for tinnitus, specifically, it is unlikely to have any relevance towards a cure...

1) because research is already in progress with 3 otology pharmas (awareness will have no influence on that now).
2) unless the campaign is done in a clever way such as the ALS icebucket challenge (which grew bigger and bigger because each participant got to name three new ones, if I recall correctly).
3) because even if you raise 10 million dollars, then "so what"; you cannot create a cure out of 10 million dollars; otology pharmas are collectively already funded with ½-billion dollars (and they do not need further funding at the moment).

Tinnitus awareness by itself means little, I am afraid - unless it is done with a preventional purpose in mind. This is something I commented on many times in the past - here are some ideas:

https://www.tinnitustalk.com/threads/letters-to-congress.6536/
https://www.tinnitustalk.com/threads/bta-refuses-to-fund-drug-and-stem-cell-research.6599/

However a piece of news will - in itself - have little value. To get into advocacy with a focus on tinnitus prevention, you need to address it at every level of society (health authories, schools, public events, lawmakers). There is plenty of "meat" in the above links.

I understand your frustration. But it is what it is.

Sorry.

 

[Larry OT]

Raising awarenss had no value? So lets keep it in the dark and avoid all potential attention…I guess.
Oh, yes…the all or nothing guy…sometimes the middle has a way of inspiring the greater good. Awareness on any level can make a difference.

Our numbers vs ALS:
Although no one knows for sure, reports suggest 20,000–30,000 people in the United States have ALS.
It is estimated that as many as 50 million people in the United States suffer from chronic tinnitus (lasting longer than six months), about a quarter of those have tinnitus that is severe enough to interfere with daily activities.

And yes, the bucket challenge was a great concept.

 

[DutchGuy]

Yesterday there was a broadcast on Dutch national TV about tinnitus:

http://tvblik.nl/altijd-wat/25-november-2014

from 10:08
unfortunately no subtitles

 

[attheedgeofscience]

Raising awarenss had no value?

For what it's worth, there is already TV awareness:

https://www.tinnitustalk.com/threads/the-2014-ata-walk-to-silence-tinnitus-donate.4669/#post-50115

So the question you would have to ask yourself is: what would make your proposal so much different than the above TV campaign that it would make a significant difference in "some" way? If you can answer that question - that very question - then you know what you are doing!

People who want to make a difference are into smart-/targeted- advocacy. Advocacy is tough going; it takes many attempts to get in touch with the right people who can make difference - trust me, I know! And even then, money, fame, etc. will not necessarily make a difference. Especially with tinnitus.

Take it from someone who knows just a little bit more about tinnitus than the average person. Not mention the average ENT, for that matter.

It is estimated that as many as 50 million people in the United States suffer from chronic tinnitus (lasting longer than six months), about a quarter of those have tinnitus that is severe enough to interfere with daily activities.

Agreed. And what does that tell you (considering the lack of information, treatments, noise regulation, and so on)?

 

[Street Spirit]

The ice bucket challenge was great and for a great cause. Anyone know ultimately how much money it generated? I think most "regular-non celebrity" people just taped themselves doing it and donated nothing. Awareness yes, but where does that lead?

I make my own family and friends aware of my H and the debilitating conditions it's put on my life and even they don't care, let alone strangers.

Last year ABC 20/20 did a piece on Hyperacusis andMisophonia..not sure what that did for H exactly maybe a few more donations to the Hyperacusis Research Foundation or whatever it's called..

 

[Markku]

The ice bucket challenge was great and for a great cause. Anyone know ultimately how much money it generated? I think most "regular-non celebrity" people just taped themselves doing it and donated nothing. Awareness yes, but where does that lead?

The ALS Ice Bucket Challenge Has Raised $100 Million -- And Counting

 

[Street Spirit]

The ALS Ice Bucket Challenge Has Raised $100 Million -- And Counting

Great! let's hope it helps bring about a cure! It's a nasty, terrible disease.

 

[dan]

http://www.ata.org/sites/ata.org/files/pdf/ADV_MasterPacket_Feb82013.pdf

 

[Larry OT]

Agreed. And what does that tell you (considering the lack of information, treatments, noise regulation, and so on)?

It tells me we need some more awareness.

I think a viral campaign is brewing...

 

[Street Spirit]

@Larry OT I deeply understand your point and motivation. I apologize if my post came off despondent and unsupportive..I am basically a bit jaded towards people caring enough to WANT to see a cure for those suffering from these conditions. .ALS is a little different..it's a killer, no doubt about it and in a horrific manner..that tends to motivate people a little more then just "ringing in the ears"
I had a friend, like you who wanted to raise awareness, but by making bracelets. Sadly he never did because he took his life first.

Stories like his or anyones where T is ruining their life SHOULD be told. So by all means, contact your friend and see what you can do..

It is better to do something, than nothing but I also like what ATEOS says regarding advocacy.

 

[attheedgeofscience]

It tells me we need some more awareness.

I think a viral campaign is brewing...

"Awareness" is too broad; too unspecific. It's like saying "don't smoke", well - hell - everybody knows smoking isn't good for them, and yet a certain %-age of the population still do (and despite warning labels bloody everywhere). So try telling a drunk teenager at a local nightclub that noise isn't good for you. Forget it.

I have recently taken up some specific quick-win-/low-hanging fruits- advocacy with the EU public health authorities. I explained a number of quick-win steps that really need to be taken (amongst them a specific implemention of earplug handouts at concerts when people get their entrance tickets). Despite the obvious and costless proposition, do you think that is something that will simply get done by a mere suggestion to the EU (and a formal reply in return)? No.

Advocacy takes a lot of patience, a lot of know-how, a lot of perseverance, and... the right mindset.

And most people just don't have that. Sorry, but that's the reality.

If you are interested, you can read more about some of targeted advocacy some of us are into here:

https://www.tinnitustalk.com/thread...dy-to-the-american-tinnitus-association.6896/

 

[Larry OT]

My teenage boys after seeing what I've been through and listening to my advise now use a lose fitting earbuds at 50% volume and wear ear protection at concerts.
Oh, and they don't smoke either. Or drink.
Wow, I just saved 2 boys from potentially a lot of misery and their friends now take earplugs to loud concerts.

All or nothing doesn't apply. My kids and their friends won't forget it.
Advocacy mindset starts with knowledge and support.
Your reality is not mine.

 

[attheedgeofscience]

My teenage boys after seeing what I've been through and listening to my advise now use a lose fitting earbuds at 50% volume and wear ear protection at concerts.
Oh, and they don't smoke either. Or drink.
Wow, I just saved 2 boys from potentially a lot of misery and their friends now take earplugs to loud concerts.

That may well be true. But those are your teenage boys - and they are impacted by seeing yourself doing not-so-well, I would guess.

A TV campaign addresses a neutral audience. That's different I am afraid.

Your reality is not mine.

Obviously you are suffering. Most people on this site are to some degree - and who can blame them...

If you are suffering then consider your options. Depending on your "budget", your location, and your willingness to experiment, there might well be some possibilities out there - anything and everything - from off-label medication, to HIFU, to stem cells, to LLLT, to ending up with clinical trials (of which there are a few).

For reasons of objectivity, I should mention that there is also TRT.

Take care.

 

[amandine]

@Larry OT

The most powerful thing you can do that may possibly remain in the minds of the viewer following transmission is to have one human interest story. You may have four minutes. Keep it short simple and dramatic.
Tell a story of suffering and desperation. One person story possibly with a high pitched sound all the way thru the transmission. Make it a really horrible dramatic story - use actors to enact the true story of someone who committed suicide due to T. Make sure you get in the suicidees despair from lack of acknowledgement or care by the medical field. Hopefully a young person who died and wait till the end of story before letting it be known that the person killed him or herself. Drama....is a must!
Make sure you emphasise the attitude in the doctors office and in general public which is just shrug of shoulders and oh well it is just a bit of tinnitus.....let it be known that people and condition are being ignored.
Have your petition set up already with the web address that people can go to straight after transmission for signing. (whatever the petition is for - emphasise public prevention message). Draw parallels to HIV and the extent that people went to to find their own cures as people with T are doing.
Emphasise the bit about prevention and that it is a health time bomb ticking..............Give prevention info as well and let parents be aware that it is their children who will suffer.

Remember the golden oldie rule of broadcasting - you are aiming at the mental age of an intelligent 12 year old, KISS = keep it simple for stupids.
Make your point fast and dramatic.

Just to repeat a post that i put out today. This has just recently happened.
A man put out a petition on change.org and got 10 thousand signatures in 2 days. A little while later and he has now over 241 thousand signatures.
It was directed at the UK govt. Much has happened and it has hit the main news channels radio stations etc... The UK govt is giving plenty of attention and publicity and money for this cause. Many practical changes taking place.
For what was / is this lone man campaigning? For - Children with learning difficulties..... This was one man on his own with one petition.

 

[Larry OT]

@amandine
Thank you for your perspective. There's many good points you have made here.
As I ponder the direction of this endeavor I will certainly make use of your ideas where I can. If it comes to be, it will be up to the network producer to manage and produce the story, but I will try and get the best material for their use.

Thanks and I love your dog!

 

[amandine]

@Larry OT

Cheers for your kind words.
I have some horrific stories of suicides thru T if you need any.....

Love your dog too!!What is his or her name? My yorkie is cuddling up to me right now as it is middle of the night here in europe. She always seems so small yet takes up so much of the bed space and kicks me with her tiny paws if I move! Cheeky and spoilt are her middle names......

 

[Larry OT]

@amandine
That's Max. He's the best!
At the moment, no suicide stories please. I'm not up to that right now. Sad enough at the moment, hour, day, week...

Who's your pup?

 

[amandine]

@Larry OT

The yorkie in my bed right now is called Pepsi Cola cos she is vibrant like the drink and the same colour. Black body and blond head. She was found abandoned during the late evening time in a forest not far from me on 10 december 2012. When found she was approx 11 or 12 months and very thin at 2kgs. Now she weighs a very healthy 4,5 kg and loves her food!
She (pepsi cola) was found the same day, just a few hours after, my beautiful Marcelle (a female yorkie) who you can see in the photo passed away (at 4pm) - she was 17 years 4 months and 11 days....her kidneys stopped functioning and short of dialysis or a kidney transplant there was nothing I could do to prevent her passing. Vet said it was due to her great age.
I miss her each and every day.....and always will.

Huge hugs to Max...i bet he takes good care of you!

 

[attheedgeofscience]

I think a viral campaign is brewing...

For something to go viral it - needless to say - requires a certain "shock" effect (especially if it is a tweet or internet messsage). For a TV news report, I guess the (following) material could still be relevant in some way.

The two photos below demonstrate before/after damage of inner ear hair cells and could be one option (and I have yet to see such photos used in any type of campaign):

#1:

#2:

If you are based in the US, then the combined annual tinnitus disability spending of at least one billion dollars for US veterans is also worth a mention:

http://www.scientificamerican.com/article/tinnitus-treatment/

And thanks for the initiative.

 

[Larry OT]

@attheedgeofscience

Thank you for the support and info. I'm struggling so much and have had some other issues to deal with, so I am not thinking as clearly as I would like.
I hope to put something together when my life is a little more stable.
I'm losing the battle at the moment, but not the fight.

 

[jazz]

I'm losing the battle at the moment, but not the fight.

As hard as this seems, you will get better. But I do hope you are sleeping well. Without enough sleep, you will not be able to function well.

About the news coverage, the best stories do grab at the heart and thus presenting a compelling narrative is essential. You'll need both interesting people and interesting stories. (Some people have great stories, but, alas, no narrative skills.) Two storytellers would be preferable--perhaps, a soldier and a teenager--juxtaposed against each other. And I do agree with @attheedgeofscience about including some graphic details of the damage behind tinnitus (e.g., the exploded hair cells) as part of the narrative. After all, tinnitus suffering is invisible (except for advanced imaging techniques), but the damage behind that suffering is not.

Just some thoughts. And I hope you start feeling better soon.

 

[valeri]

Would targeting war veterans be a good idea?
People are usually more sensitive and respectful of them.
Just a thought!

 

[valeri]

@attheedgeofscience

I'm confused here, you say that even 10 mill would not make any difference but in retigabine thread (if I'm not wrong) we can see that a lot of research is well underfunded?!

 

[attheedgeofscience]

@attheedgeofscience

I'm confused here, you say that even 10 mill would not make any difference but in retigabine thread (if I'm not wrong) we can see that a lot of research is well underfunded?!

All of that research which goes unfunded is pure research - research which has no other purpose than to establish the truth about "something" - an axiom of truth, so to speak. It's tiny bits and pieces of incremental knowledge the research professors look into. It's not like any of their research has a grand overall scheme called "let's find a cure for tinnitus". It's all very piecemeal and there is no overall coordination with the research going on in the medical field. It's a bunch of researchers working at different universities all pursuing their own little interests.

And it's not like any of them are particularly interested in helping out with a matter that leaves a lot of people suffering. As this board knows, I have been in contact with a number of CEOs, ENTs, and professors of otology companies/institutions over the past year. In some cases for personal reasons (off trial drugs); in other cases for selfless reasons eg. a petition or sharing knowledge with this board. In all cases, the response is limited or neutral - somtimes even unhelpful, if... they actually respond at all...

Scientists of pure research have no sense of urgency in relation to their work. People of the corporate world do. That's why I am happy to see that there apparently is enough basic research done on tinnitus to allow it to be considered an applied research topic instead of an area of pure research.

 

[attheedgeofscience]

Some more poster "material" for what it's worth.

I believe there is also a clothes(?) store which has the same slogan as the one below...

...it would probably be better if they replaced it with one of these:

And the above warning sign would be such a simple, simple thing to have at certain venues eg. cinemas, nightclubs, concerts, etc. At least some people would probably think twice, or use the earplugs that event-organizers could/should provide (in a perfect world)

But we are just not there yet...

 

[attheedgeofscience]

And a bit more...

 

[Larry OT]

@attheedgeofscience

Thank you all for the support.
I hope to be in better shape at some point. My depression is eating me up and I'm very confused about the meds and what I should take or shouldn't.
I can't tell if my mind is mush so often from the current meds or the anxiety / depression or the tinnitus. Days of clarity are mixed and my strength dissipates.
I will work on this as I am able. Wish me luck and recovery.
I hope you are doing well as can be. Please keep up the great work you do for all of us.
I'll be back.

@jazz

Thank you.
I hope you are well.

 

[Marlene]

Good idea Valeri you put up get the Vets behind it Civillians would back those up ,no question ,if they knew these wars have affected them and Tinnitus is a huge problem .Gets my vote ,it's getting the word out to them to climb on board .heres it coming from Ex service wife of 18 years .

 

[NiNyu]

I think his idea was really great. Anybody capable to pick up and make an awareness and research news piece about T ?