My Posting Place

The problem is developments for these cost money. Money coming out of organizations like the ATA, when we need ATA money going to actual research.

If we spend money on tinnitus habituation research, and we find a cure, then that tinnitus habituation research becomes obsolete. And as little as some members around here want to admit, yes we're getting closer and closer to a treatment. Saying "treatment by 2030" is an extremely conservative estimate it will probably be before then. And when a treatment/cure comes, then sufferers will want that instead, and all that money spent on habituation crap has been wasted. Money that could have been spent getting us closer to the endgame, instead of getting in our way.

 

I take your point TFF - but when people are struggling so bad we have to try to help them.
Not everybody is capable of stark stoicism.

 

That's what we're trying to do. They need REAL help. And it's on the way, but it would be a lot faster if we've been maintaining a treatment-based focus for longer than the beginning of 2018...

 

@threefirefour - I don’t follow the research in the way that you do.
I am pretty much a sceptic.
I am very doubtful about both a cure and a treatment really.
Perhaps I have endured far too many disappointments in my life.

 

Trust me, me too. But given the results we've been seeing, it's more logical to assume they will succeed than to assume they won't.

 

Habituation is a short term goal. It's good. But not good enough.

I will never experience true peace/happiness until this demon noise is gone forever.

It took everything, my life is like toilet paper now.

 

You know Contrast, I'm surprised you don't like TRT shills, considering how much you like dinosaurs

 

Hi there

 

“Wha-da-ya-mean - ‘Hi there?’
(Provocative F*cker !!!)

 

“Comes on ‘ere and says ‘Hi there!’
That bloke’s askin’ for a knuckle sandwich...!
Good job ‘es out of reach.....”

 

He didn't do nothin', good bois just minding his own business.

 

This makes no sense to me at all. Why not do both? Surely the aim has to be to prioritise ones own mental health first; to survive and to adjust so one can live?

That way if a cure happens, awesome, we hit the jackpot, but we are not relying on it entirely to live out our lives. I’m not being negative here, but I don’t think we’ll ever see a cure in our lifetimes. There’s just not enough interest from the tinnitus community, in my opinion. And this has been going on for decades, saying the cure will be here in 10 years. If the sufferers can’t raise more money than a donkey sanctuary than how can we expect non-sufferers to be interested in helping?

The MPP posters are supposedly the biggest cure advocates on this site, so my question is: what have you all done to help, objectively speaking? Have any of you raised any money or offered any help in any other ways?

In the meantime there are people killing themselves because they need help now. Not in 30 years. I’m not trying to be purposefully argumentative; I genuinely want to try and understand your thought process? Advocates of a cure by posting memes on a separate part of a tinnitus forum (which the wider public has no clue about) whilst rubbishing any methods that may, or may not, help people cope in the here and now.

Like I said at the top; why can’t we do both? There’s no way I could have carried on the way I was waiting for a cure.

 

We want what's best for tinnitus sufferers. What's best is a treatment or a cure. Obviously money for tinnitus research is very limited, so we have to be very frugal with what we support. Our money should go 100% to finding a real treatment, because that's the goal. Habituation crap just won't be useful when we get there (and we will). Therefore a dollar spent on tinnitus habituation research is a dollar wasted. It's like if the US military used money from weapons research into research on how to make better swords.

You said you want to understand my thought process, so simply put:

We're inevitably going to have a treatment, given the path of research. Our goal should be to get there as soon as possible instead of slowing ourselves down by wasting money on habituation research, because that will be obsolete when we find a treatment anyways.

 

Total agreement Ed.
I need all the help I can get, just as you do,
just as so many of the lovely suffering friends I have made on here do.
As well as my own pain, it pains me so much to hear wonderful people undeservingly suffering this thing also.

But since coming on here I quickly realised that this campaign (let’s kick the whole idea of Habituation to death) is TFF’s favourite ‘hobby-horse.’
He’s actually very good at it - can drone on for post after post!

But I have to say, that apart from that, TFF is a perfectly decent chap.
(Perhaps we could have this argumentative bit surgically removed?)

 

But that doesn’t really answer the question. Where is the money for the research going to come from because tinnitus sufferers don’t donate anything. It’s really pitiful. The Guardian newspaper ran a list of the top 1000 charities in the U.K. and not a single tinnitus charity made the list.

You can’t expect people to wait with no help whatsoever. Especially when a cure is unlikely. What we need are more proactive people who can speed the research along by being hands on, but at the same time, we should never neglect the people who are suffering right now. People need to learn ways to cope.

 

I don't see what I'm doing specifically wrong here. Other users beat the idea of habituation to death too. Just in support. They've been doing that long before I came on here. Nobody ever had a problem with them. But suddenly whenever I do it I'm "repetitive'. I'm doing the same damn thing, just against habituation.

People talk about how annoying my anti-habituation rhetoric can be, but I'm partly just playing devil's advocate. The pro-habituation voice is much more droning than mine. You're just looking the other way because you agree.

 

I understand where you’re coming from. But habituation is a real process for many people. It’s not a myth, and more to the point, it’s realistically what we should all be aiming for (at this point in time).

Habituation does NOT affect if and when a cure will be found. This is the bit I don’t understand. Whether one habituates or not makes zero difference to the outcome of a cure.

Only advocacy and hard work can do that: raising money, supporting research teams, supporting TT, supporting tinnitus charities, writing to MPs, writing to newspapers, raising awareness on social media, real life advocacy work, etc.

 

Well good for them. If it's a natural process, then why waste money on more research when that money could go to real research? Habituation may not have an effect on how soon we see a treatment, but wasting money on it sure does. If habituation is the main focus of the tinnitus communities and institutions, then we're just not going to advance as fast. Have you seen the cover of ATA's magazine? You can't just look at that and tell me with true honesty that this is not getting in the way. We NEED to shift into a new paradigm that's coming anyways. All the advocacy stuff you're talking about is great, and that needs to be the focus. But it's not going to help if we're still stuck in the days of only focusing on habituation. We can't move forward looking backward.

 

I agree with this. I wouldn’t spend a penny on habituation research because there’s no point. I’ve never advocated that in my life. Research money should be for finding a cure, but we need the money in the first place to achieve it.

I habituated without a treatment, but I’m also aware that others really struggle to.

 

We don't have money. The fact we've come as far as we have on a lemonade stand budget is nothing short of a miracle. We just don't have the money to waste on dinosaurs like Jastreboff's model. It's beyond pointless, it's counter-productive.

 

@threefirefour , @Ed209

I personally am very doubtful about a cure.
We are talking about the deteriation of nerve cells.
But whether a cure ever comes or not, we can not leave sufferers without hope, without clinics, without treatments, without therapies.
If people need to be taught Jastreboff’s model, and it helps them, then that’s fair enough.
It gives them hope.

What would you do for sufferers, Vets who’ve given everything, including their health, for their country etc....
Would you ‘stake them out to die?’

......perhaps there’s some Apache in your blood line..?

 

I don’t think we’ll ever see a cure but I’d love to be proved wrong. The best we can currently do is help and support each other.

 

The problem with both of these is the assumption that a cure is the only goal. It's good but we're looking for a treatment, which is extremely realistic.

 

Same goes for a treatment as well in my opinion. I think we’re a long way off something that will be highly effective, but again I’d love to be proven wrong.

Not enough of us help, unfortunately.

 

I remember when I was a kid there was a tinnitus feature on a program called ‘tomorrow’s world’. This would have been late 80’s/early 90’s. What really stands out in my memory is that they were talking about a treatment being imminent even then. They had a device which played sound into a mans ears and it gave him temporary relief. It was very similar to Susan Shores research. Anyone watching at the time would have likely thought a good treatment was around the corner. Well fast forward nearly 30 years and we are in exactly the same position.

When I first joined tinnitus talk I followed all the drug trials very closely as I put all my hope into it; it was the only way I saw myself getting through all of this. But, after witnessing Aut00063 and Am101 fail, I started to become dispondant. I realised that society had been talking about treatments for tinnitus for decades and that there has always been a mantra of ‘in the next 10 years we’ll have something’. Well nothing ever materialises and the only true fact that remains, from what I can see, is that very few people help the situation. Most people sit back and contribute nothing of any use, so from this point of view, I don’t see things changing anytime soon.

 

So you mean like residual inhibition? A thing we have?

 

Yea, exactly that.

 

Well we have that now. Tomorrow's world was correct there. Susan shores device doesn't work by RI btw.