Going on Camera Tomorrow Night for a Nationwide TV Documentary in New Zealand

[trc]

I'm wondering what to say to raise awareness.

They want to interview me about my experience in relation to this article: https://newatlas.com/tinnitus-brain-inflammation-treatment/60199/

 

[Digital Doc]

Remind them all that this breakthrough is still just benchtop research, and it is years away until we get a treatment that can be approved clinically.

 

[Autumnly]

I'd say that tinnitus can be severely debilitating and that we have a dire need for medical treatments and ideally a cure. More often than not tinnitus is seen as a minor inconvenience, people aren't aware how severe it can be and that millions of people worldwide are struggling with it. Also there are currently no medical treatments and the treatment mentioned in the article is probably still years away.

 

[Lucifer]

@trc may I ask who is interviewing you?

 

[Cojackb]

Good luck with this mate

 

[Jazzer]

Sounds like a promising project x

 

[Candy]

It's a life long battle - even once you're used it it can come out of the shadows and new tones or sounds can be added which takes you back to square one.

It can grow in intensity for some. We need a cure...

 

[Hazel]

Good luck @trc! You already got some great tips above. Maybe you can also say something along the lines of how many tinnitus sufferers there are out there (millions) and if any of them need advice or support from peers they can come here to Tinnitus Talk

 

[Jack Straw]

Give Tinnitus Talk a shout out!!!!!!! For real though plug us!

 

[Lilah]

A lot of people do not know what tinnitus is. Maybe briefly describe the different sounds and also the severity levels first as an intro.

And also that doctors brush off tinnitus, that they don't really care...

 

[Autumnly]

Completely forgot to say this but thank you so much for doing this!

 

[Jazzer]

It's a life long battle - even once you're used it it can come out of the shadows and new tones or sounds can be added which takes you back to square one.

It can grow in intensity for some. We need a cure...

Absolutely agree Candy.

In the meantime, while we wait for a cure, which may or may not become a reality, much as we want it to, we have to go on living our lives, which have become very difficult in many cases.

It takes huge dedication and determination, and often a strategy for coping - family support, meditation, relaxation, just whatever we can devise that works for us.

We Must Not Just Stop Living!!

 

[sakrt]

I'm wondering what to say to raise awareness.

They want to interview me about my experience in relation to this article: https://newatlas.com/tinnitus-brain-inflammation-treatment/60199/

Thanks for making an effort to bring up awareness. I was curious what you meant by your experience? Did you mean of your own personal suffering with tinnitus or were you part of their clinical research or?

 

[ChrisBoyMonkey]

Don't forget the U.S. military Vets argument. In the U.S. there was a huge push saying "support our troops" while the war was ablaze but now that its died down everyone is forgetting about the troops. Tinnitus is the number one service connected disability among U.S. veterans, I'm one of them. This condition is testing every piece of my metal even now that I'm out.

There needs to be more research and funding to find a cure to end tinnitus. Habituation should be a thing of the past. We aren't living in rocks anymore. A cure can be found if there were more resources dedicated to it and this breakthrough is proof of that.

 

[Lucifer]

If you want to watch the documentary, here is the link.

 

[Candy]

I like the way the specialist didn't sugarcoat it, it's often trivialised.

Martin Kemp was on Loose Women a couple of years ago, what a missed opportunity, it was so breezy. We also had the ENT who cured himself on This Morning. The quality of coverage is always so disappointing, oh and a lady who did Reiki.

Why haven't they interviewed me, I've left my contact details with the BTA but no such luck. Give me some air time and I'll give you a piece of my mind.

@Hazel do we have a documentary in the pipeline by the way? Interviewing members? Fly on the wall is what we need.

"In Search of Funding"

With a big donate number at the end. Think you'd be perfect for it.

The runaround you get in the healthcare system is also a sad state of affairs. When someone then harms themselves it's "a tragedy". Do something about it then!!!

Sorry, rant over... I keep on reading articles and people's comments and yet very little awareness.

We need to get onto Channel 4's Unreported World or something.

 

[Hazel]

@Hazel do we have a documentary in the pipeline by the way? Interviewing members? Fly on the wall is what we need.

"In Search of Funding"

With a big donate number at the end. Think you'd be perfect for it

Would love to do this. To be honest it's just hard for us to find the time for it, or the money.

We created the Joan van Baarle/Gaby Olthuis documentary on only 500 euros, but that was only because we were very lucky to find volunteer cameraguys and Markku spent ages on all the editing himself. Also, it happened to be local to me, so limited travel involved.

We still plan to use this doc more, possibly to educate healthcare professionals. But it will be hard to use for public awareness because a lot of organisations won't even share anything suicide/euthanasia related. On the other hand, we had also hoped members would be more active in pitching the video to media outlets for instance.

Anyway, all of this is not to shoot down your idea. We're very open to it. But we would just need a LOT of help to get it off the ground. Specifically, we'd need:

• Funding for the production, and ideally more than a measly 500 euros to create something really professional;
• At least a few members willing to put their face on camera and talk openly about their condition - This has always turned out very challenging; many people want awareness, but very few are willing to put their face out there. So kudos for being willing to do this, @Candy!
• Volunteers to help with organisation, logistics, communication, content preparation, editing, etc.

If we get a few people stepping up and taking an active role, anything is possible!

 

[Candy]

It would make for an amazing documentary just doing it in the UK. I didn't realise the costs involved.

It's the sort of documentary we could raise funds for on Tinnitus Talk.

Are the any writers on Tinnitus Talk?