I Hate TRT (Tinnitus Retraining Therapy)

[threefirefour]

@Paulmanlike @Michael Leigh I'm fully aware of trobalt and why it's effective/dangerous. A redone version of it (RL-81) is about to begin preclinical trials sometime next year. That means anywhere, 5 years (optimistic) to 15 years is a good window. 5 years assumes everything goes perfect and it's fast tracked. It's going to be 15 times as potent with few/none side effects. My 10 year estimate is based on the fact it's an epileptic medicine and epilepsy is treated like fucking royalty by the pharmaceutical companies. They get what they want. The question is will it just reduce tinnitus or completely get rid of it temporarily.

 

[Michael Leigh]

If you put as much energy into adopting a more positive attitude to life and tinnitus as you do into looking into reasearch on tinnitus and swearing I'm sure that you would feel a lot better.

 

[Paulmanlike]

@Paulmanlike @Michael Leigh I'm fully aware of trobalt and why it's effective/dangerous. A redone version of it (RL-81) is about to begin preclinical trials sometime next year. That means anywhere, 5 years (optimistic) to 15 years is a good window. 5 years assumes everything goes perfect and it's fast tracked. It's going to be 15 times as potent with few/none side effects. My 10 year estimate is based on the fact it's an epileptic medicine and epilepsy is treated like fucking royalty by the pharmaceutical companies. They get what they want. The question is will it just reduce tinnitus or completely get rid of it temporarily.

Let's hope so! Fingers crossed we can get rid of this rather than have to live with it!

 

[threefirefour]

If you put as much energy into adopting a more positive attitude to life and tinnitus as you do into looking into reasearch on tinnitus and swearing I'm sure that you would feel a lot better.

If you put as much energy shilling for TRT and getting mad at me for swearing despite the fact I've only done it twice here, into anything else, you would be very successful at it. It takes two to tango, and I'm a better dancer.

Oh and Bobbie7, this is what I'm talking about.

 

[glynis]

Posts should be aimed at Tinnitus,Hyperacusis,emotions ,resurch and more topics with out silliness
( silly banter between members to belittle the things they truly believe in that could help or ranking members upbringing is not needed )

My views....Love glynis

 

[Tamalak]

@Tamalak -

It would add validity to your comments (maybe?) if you would present yourself in a more dignified manner. Your use of indelicate expressions shows you in a very undesirable light and I very much doubt if they are appreciated by anyone in this forum.

Well take a hard look because 10 people on this forum SHOWED their appreciation for my comment, which tells us all we need to know about the validity of your 'doubts' and your judgement in general.

I wonder when, and if, you will learn that you don't speak for everyone here. I fear you are well past the age where learning is possible unfortunately. It doesn't matter, because only the most dimwitted fall for the ad populum fallacy anyway.

 

[Paulmanlike]

I think it's fair to say we've been getting mugged off for years with TRT....people want a real treatment.

 

[GregCA]

The pill is actually the most realistic thing. It will almost certainly come out in 10 years.

I wish that were true. I'm pretty sure that's what they used to say back in 2007...

I have had tinnitus for 20 years and people were saying the same thing 20 years ago when I first got it.

Right. At the same time, there is always a breakthrough point, so the guys who claimed "it'll be solved in 10 years" 10 years prior to that point are going to be correct indeed. It's just hard to predict when the breakthrough is going to be, just like it's hard to predict when a stock market bubble is going to burst. You can tell things are accelerating and get exhilarating, but you can't predict when the tipping point is going to happen.

I whish such a thing comes out but as I've said: 19 out of 20 medical condtions cannot be cured.

I see people bring this up every once in a while, and I'm unsure why it's relevant. The common cold has no cure, and that's no big deal. It's a small deal. Cancer not having a cure is a big deal. Tinnitus not having a cure is a big deal. ALS not having a cure is a big deal.
Out of those 19/20, how many are a big deal? That's what matters. Let's not dilute the importance of incurable diseases with statistical blurring. I think it does everyone a disservice.

Please keep in your mind 10. 20 30 years from now things might still remain the same.

"Well, that's the kind of negative thinking that is going to make you fail your therapy, mister! Get it together and start thinking positive!"

 

[vermillion]

A redone version of it (RL-81) is about to begin preclinical trials sometime next year.

Where's this announced?

 

[Tamalak]

0/20 medical conditions cannot be cured. Our problems - every one of them - are physical. They are made of stuff. Stuff can be fixed. No excuses.

 

[vermillion]

I fear you are well past the age where learning is possible unfortunately

Sorry @Tamalak I don't have something personal but, Thumbs down for the insult. That's rude. I thought there was an etiquette on the forum.

 

[threefirefour]

@GregCA I'm saying what I'm saying with confidence for a reason. Remember I'm a die hard pessimist so I'd be the last person to admit something doesn't suck. I studied a lot of the hold backs and what for a medicine to go from idea to product, and yeah it takes a long time. Medicine can take 15 years to go through all that. Now the longest is researching compounds, which is about 7 years. RL-81 is wrapping that up, and entering pre clinical. That could take from 3-5 years, which is studying on animals and stuff. Then it's clinical where it studied on people, and then the post clinical trials, where it's put on the market and studied. Assuming everything doesn't go absolutely terribly 10 years is very realistic. The question is how effective will it be?

@vermillion on their twitter somewhere I think.

 

[threefirefour]

Sorry @Tamalak I don't have something personal but, Thumbs down for the insult. That's rude. I thought there was an etiquette on the forum.

We do, but bobbie7 hasn't been respecting it for some people.

 

[vermillion]

@vermillion on their twitter somewhere I think.

Is that prof. Tzounopoulos med? Could you direct me to their twitter? It's been a long time since there was an update about it. Is there a thread here that mentioned it? I might have missed it.

 

[threefirefour]

Is that prof. Tzounopoulos med? Could you direct me to their twitter? It's been a long time since there was an update about it. Is there a thread here that mentioned it? I might have missed it.

It was a screenshot I can't find it either. If I find it again I'll reply to you with it. That and I'm on my phone.

 

[Bobbie7]

Sorry @Tamalak I don't have something personal but, Thumbs down for the insult. That's rude. I thought there was an etiquette on the forum.

Yes @vermillion you are correct; that is rude and there are rules and etiquette which should be followed, but unfortunately there are those who have no respect whatsoever and sadly, this is plainly obvious.

 

[threefirefour]

Yes @vermillion you are correct; that is rude and there are rules and etiquette which should be followed, but unfortunately there are those who have no respect whatsoever and sadly, this is plainly obvious.

Be the change you wish to see in the world. I've read through Tamalak's profile and he is not a bad guy. He seems upset at you, and considering my past experience with you, despite my best intentions sometimes; I'll assume it's well founded. Now for me I promised you I will stop doing things that upset you, and apologized to you multiple times for times when I did. I don't know what your relationship with him is or he with you, but it's obvious I'm not the only one you've held a grudge against.

 

[Michael Leigh]

Yes @vermillion you are correct; that is rude and there are rules and etiquette which should be followed, but unfortunately there are those who have no respect whatsoever and sadly, this is plainly obvious.

It is unfortunate that some people have no class, principles or etiquette, and believe using profanity and other bad language is the norm. They fail to understand the meaning of respect because they have none for themselves.

 

[GregCA]

@GregCA I'm saying what I'm saying with confidence for a reason. Remember I'm a die hard pessimist so I'd be the last person to admit something doesn't suck. I studied a lot of the hold backs and what for a medicine to go from idea to product, and yeah it takes a long time. Medicine can take 15 years to go through all that. Now the longest is researching compounds, which is about 7 years. RL-81 is wrapping that up, and entering pre clinical. That could take from 3-5 years, which is studying on animals and stuff. Then it's clinical where it studied on people, and then the post clinical trials, where it's put on the market and studied. Assuming everything doesn't go absolutely terribly 10 years is very realistic.

I want it as much as the next guy, but I think the 10 years schedule is assuming everything goes really well. And that's not realistic. It's possible, but low probability.
In the real world, problems arise. Ever heard of AM-101? It's extremely rare to have a smooth sailing schedule that goes from one step to the next without any rework or delays.

 

[threefirefour]

I want it as much as the next guy, but I think the 10 years schedule is assuming everything goes really well. And that's not realistic. It's possible, but low probability.
In the real world, problems arise. Ever heard of AM-101? It's extremely rare to have a smooth sailing schedule that goes from one step to the next without any rework or delays.

5 years, which is in the scope of possibility, is being optimistic. 10 years is assuming everything doesn't go to absolutely terrible. AM-101 is trying a rework but I have very little faith in it. It did not address the cause of tinnitus, so ofc it failed, and it will do so again.

 

[GregCA]

10 years is assuming everything doesn't go to absolutely terrible.

It only takes one thing to go absolutely terrible to derail the plan completely (we've had our share of setbacks with T, you should know this). You don't need everything to go absolutely terrible. Just one. Something along the lines of "what worked really well on mice seems to have no effect on our human trial".

 

[threefirefour]

It only takes one thing to go absolutely terrible to derail the plan completely (we've had our share of setbacks with T, you should know this). You don't need everything to go absolutely terrible. Just one. Something along the lines of "what worked really well on mice seems to have no effect on our human trial".

Yes that's the clinical trials. Assuming that works it could be realeased between 5-7 years. I'm assuming they have to go back to the drawing board once. Twice, that would suck.

 

[Onsdag]

They don't agree on what causes tinnitus. How could they cure it.

 

[GregCA]

Yes that's the clinical trials. Assuming that works it could be realeased between 5-7 years.

Why would you assume it works? Success rates for clinical trials are low! If you understand statistics (and a bit of math), you should be assuming that it will most likely not work. Working is the exception. Failing is the rule (statistically speaking). Sorry to dampen the optimism with a dose of reality, but it is what it is.

From http://www.appliedclinicaltrialsonline.com/low-success-rates-persist-clinical-trials :

The analysis using Informa's Biomedtracker service covers 7,455 programs involving 14 major disease areas and 9,985 transitions from Phase 1 to II to III. Likelihood of approval from Phase 1 ranged from only 5% for oncology therapies to 26% for hematology, where new therapies for hemophilia have done well.​

From http://www.nature.com/nrd/journal/v15/n7/full/nrd.2016.136.html?foxtrotcallback=true

Conventional wisdom holds that only around 10% of drug development projects make it all the way from Phase I to approval. Two studies of clinical trial success rates now provide updated granularity to this rule of thumb, and show considerable variation by therapeutic area and drug modality.​

 

[GregCA]

They don't agree on what causes tinnitus. How could they cure it.

They could cure T that has a specific root cause (or a subset of them). That would still be very positive.

 

[threefirefour]

They don't agree on what causes tinnitus. How could they cure it.

A few things here:

1) there used to be two big camps: "tinnitus is caused by the ear", and "tinnitus is caused by the brain". The ear folks have mostly died out because they're wrong. This is a brain medicine I'm talking about.

2) this medicine is based off a discontinued medicine that was very good for tinnitus. This time it's just a hell lot more potent, so it will probably work more.

 

[threefirefour]

Why would you assume it works? Success rates for clinical trials are low! If you understand statistics (and a bit of math), you should be assuming that it will most likely not work. Working is the exception. Failing is the rule (statistically speaking). Sorry to dampen the optimism with a dose of reality, but it is what it is.

From http://www.appliedclinicaltrialsonline.com/low-success-rates-persist-clinical-trials :

The analysis using Informa's Biomedtracker service covers 7,455 programs involving 14 major disease areas and 9,985 transitions from Phase 1 to II to III. Likelihood of approval from Phase 1 ranged from only 5% for oncology therapies to 26% for hematology, where new therapies for hemophilia have done well.​

From http://www.nature.com/nrd/journal/v15/n7/full/nrd.2016.136.html?foxtrotcallback=true

Conventional wisdom holds that only around 10% of drug development projects make it all the way from Phase I to approval. Two studies of clinical trial success rates now provide updated granularity to this rule of thumb, and show considerable variation by therapeutic area and drug modality.​

I'm fully aware of this, which is why I assumed it would fail once; because it probably will. 10 or maybe 15 years is very likely. Remember, I'm the community diehard pessimist. I wouldn't say anything positive unless I was absolutely sure.

 

[GregCA]

The ear folks have mostly died out because they're wrong.

They're not wrong: some T is caused by the ear. And for some of these cases we actually do have a cure.

 

[threefirefour]

They're not wrong: some T is caused by the ear. And for some of these cases we actually do have a cure.

If you're talking about earwax kind of sure. Remember my tinnitus was caused by earwax and I have no hearing loss to 19khz. What I'm saying is there's a camp of people who think fixing hearing loss will cure the tinnitus. This is very likely to be untrue.

 

[GregCA]

I wouldn't say anything positive unless I was absolutely sure.

Sure, I'll take your word for it.