Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

[attheedgeofscience]

Isn't there more then 3 people that are either members of Team Trobalt or Staff?!

This isn't a debate about adding up the tally. It is about the masses. Whether it is 3, 5 or 10 ratings is irrelevant. What we need to see is ratings in the thousands. And yes, I have rated a certain number of posts - but I am not going to tell you which ones. There is a reason why some of us use a pseudonym for posting!

P.S. And in any event, staff/Team Trobalt members have every right to exempt themselves given the huge amount of effort already devoted to the cause. I have personally put in some +500 hours of high quality work (good enough to work with top-level researchers!).

 

[briano]

Has Autifony posted their update on the results? I have not seen it yet.

 

[amandine]

This isn't a debate about adding up the tally. It is about the masses. Whether it is 3, 5 or 10 ratings is irrelevant. What we need to see is ratings in the thousands. And yes, I have rated a certain number of posts - but I am not going to tell you which ones. There is a reason why some of us use a pseudonym for posting!

I keep asking but not getting any answers. Please ATEOS how can we move forward. Perhaps now with this Autifony news going on please is there a way to get people to like the TT thing on FB or what is the new way forward? thanks

 

[Silvio Sabo]

This isn't a debate about adding up the tally. It is about the masses. Whether it is 3, 5 or 10 ratings is irrelevant. What we need to see is ratings in the thousands. And yes, I have rated a certain number of posts - but I am not going to tell you which ones. There is a reason why some of us use a pseudonym for posting!

I wasn't doing that. I was just amazed it was so few. At least a couple of hundred would have been what I would expect. I just can't believe it. I'm shocked!

 

[attheedgeofscience]

Has Autifony posted their update on the results? I have not seen it yet.

It will be there Wednesday (at the latest).

 

[briano]

It will be there Wednesday (at the latest).

Thank you!

 

[amandine]

@attheedgeofscience just curious as to how you chose the Trobalt team of people....I am aware of people who have been using Trobalt but have not been approached by you......so what did someone have to do to be a member of the research team? other than taking trobalt and reporting their findings? thanks

 

[preslys]

It will be there Wednesday (at the latest).

Good results of course.
I will contact autifony to tell them that potassium channel healed me.

 

[attheedgeofscience]

@attheedgeofscience just curious as to how you chose the Trobalt team of people....I am aware of people who have been using Trobalt but have not been approached by you......so what did someone have to do to be a member of the research team? other than taking trobalt and reporting their findings? thanks

Participants (= "test subjects") are not part of the research team. There is a division between researchers and study participants. We do things behind the scenes, and, there is a reason for that. No further questions please.

 

[amandine]

Good results of course.
I will contact autifony to tell them that potassium channel healed me.

Well done Preslys and yes please do contact Autifony and let them know! Very important stuff! It may only be an anecdote but there are many anecdotes on here including @Danny Boy whose T is also completely resolved like yours....

Did you have any hearing loss at all or not? thanks

 

[Vedder]

I don't understand why should anyone feel bad for not signing up or engaging in anything regarding "the fight for a cure" in a support forum. The only way to get better as of today is to use the available treatments (hearing aids, masking when necessary, medication for depression and anxiety) and forgetting about it as much as you can. 1-2% of people with tinnitus are debilitated by their condition. If everyone with tinnitus was posting and reading and hoping for cures then they would bring the sound in the forefront of their consciousness and the percentage would rise. When I first discovered that what I heard in my ears and head was tinnitus, I started roaming into forums like this and from a mild annoyance my tinnitus took over my life. That's why I was just looking at the research topics every now and then and avoided signing up. Now I did, hope it helps...lol
As concerns Trobalt, it might work... If it does, and if benefits outweigh the risks, then depending on the severity of tinnitus it might be prescribed in the future. Believe me, all pharmaceutical companies would want a new indication for one of their drugs. But that needs evidence, and sorry, a couple of anecdote reports of people having success with it is not enough evidence. Also, Danny Boy, if I remember right you got tinnitus from an infection and used trobalt really soon afterwards and your tinnitus significantly improved. There is a big chance it improved by itself once the infection cleared and you are on a pretty hard drug with no reason (I'm not saying stop, I wouldn't take that responsibility).
Whatever happens with autifony, don't panic. One day there will be a treatment. What I am afraid is that any treatment that does not target the hearing loss (meaning hearing loss cure) will have significant side effects so only those severely affected would get treated. Stephen Nagler says there will never be a cure. Don't forget he's running a business on TRT...
All you have to do is if you are mildly affected get over it and one day a cure might surprise you. If you are severely affected talk to each other and to a psychiatrist who understands the concept of tinnitus.

 

[Pumpkin]

As a newer member of this community I am still getting to grips with all the various treatment research that has been going on and openly admit I have only touched the tip of the iceberg....however I will offer my support to the cause in any way I can. Do let me know if there is anything I can offer in way of assistance.

 

[Silvio Sabo]

I don't understand why should anyone feel bad for not signing up or engaging in anything regarding "the fight for a cure" in a support forum. The only way to get better as of today is to use the available treatments (hearing aids, masking when necessary, medication for depression and anxiety) and forgetting about it as much as you can. 1-2% of people with tinnitus are debilitated by their condition. If everyone with tinnitus was posting and reading and hoping for cures then they would bring the sound in the forefront of their consciousness and the percentage would rise. When I first discovered that what I heard in my ears and head was tinnitus, I started roaming into forums like this and from a mild annoyance my tinnitus took over my life. That's why I was just looking at the research topics every now and then and avoided signing up. Now I did, hope it helps...lol
As concerns Trobalt, it might work... If it does, and if benefits outweigh the risks, then depending on the severity of tinnitus it might be prescribed in the future. Believe me, all pharmaceutical companies would want a new indication for one of their drugs. But that needs evidence, and sorry, a couple of anecdote reports of people having success with it is not enough evidence. Also, Danny Boy, if I remember right you got tinnitus from an infection and used trobalt really soon afterwards and your tinnitus significantly improved. There is a big chance it improved by itself once the infection cleared and you are on a pretty hard drug with no reason (I'm not saying stop, I wouldn't take that responsibility).
Whatever happens with autifony, don't panic. One day there will be a treatment. What I am afraid is that any treatment that does not target the hearing loss (meaning hearing loss cure) will have significant side effects so only those severely affected would get treated. Stephen Nagler says there will never be a cure. Don't forget he's running a business on TRT...
All you have to do is if you are mildly affected get over it and one day a cure might surprise you. If you are severely affected talk to each other and to a psychiatrist who understands the concept of tinnitus.

This was sortof my point in a post a page back or so. I don't go to this forum everyday because I try to get my mind off of tinnitus. And just like you I usually check for alerts or if there is something new in the research department. And if I do go to this forum I usually have a really bad day and tinnitus is kicking my butt extra hard. And in that case it's on my mind already.

However I am annoyed by my tinnitus to an extent that it's clearly effecting my life and how I socialize with other people. F.i. I wear custom made earplugs on a daily basis when I go to town or where there is a lot of people, traffic and/or noise. The noise levels aren't dangerous but I'm simply too scared. I just can't risk any further damage or worsening of my condition.

But with all that said I do agree we need to be more vocal about our condition as it's not getting nearly as much attention or funding as one would hope for.

By the way it's not 1-2 % of all of people who have tinnitus that are debilitated. It's about 20 %. But that 20 % of all tinnitus affected people are about 2-3 % of the whole population as the figures for people affected by tinnitus is about 10-15 % of the whole population.

 

[Champ]

I would take sitting in a wheelchair over this thing any day. I would let them saw off my legs with a hacksaw if I could get rid of this thing forever. But that's me!

I thought about that seriously and realized, fuck no, my tinnitus is loud and over everything, but I enjoy my appendages too much lol

 

[attheedgeofscience]

Maybe Nagler was right from the start when he said no cure will ever be found!

I wrote the exact the same thought to someone on the forum yesterday (in a PM). Whatever one's position, it is hard to argue that the man is not intelligent.

But science is catching up. And... at-the-edge-of-science wasn't just a randomly picked pseudonym either, haha...

 

[Eltel]

Nobody can say with any certainty there will never be a cure for any illness ,disease or ailment .
Progress in all medicine and procedures are always being made .
In yrs to come people will laugh about the problems of 21st Century people

 

[Neilpk]

I just thought I'd let you all know that they have stopped taking candidates for AUT00063.

The reason I know this is because I had an appointment set for later this month. I just received a phone call this morning from Autifony saying they are not accepting any more candidates for this trial.

I am guessing it means one of two things 1) they have completed the trial or 2) the trial has just been aborted.

 

[Dubbyaman]

Too bad we werent all educated about this bull shit condition before hand. We wouldn't be in this stupid never ending maze of trying to find solutions.

 

[Aaron123]

I've been thinking about the notion of a "cure" for some time (and apparently I am not the only one). In fact, I think there is/was a poll on when we think a cure will be found.

If you look around at other conditions affecting the brain or the nervous system, most are at best managed with drugs rather than cured. Moreover, in most cases, drugs are hit or miss and for reasons that are unknown. Thus we have multiple anti-epilepsy medications, anti-depressants, etc. I'm hopeful that AUT00063 continues if only so that there is something out there to try. If it makes it, I have no illusions that it will "cure" everyone, but it seems likely that it will help some people as we have seen with Trobalt. This is also why I hope AM-101 makes it. As a doctor who is at a trial site for AM-101 told me "If it is approved, we can try it on people who have had tinnitus longer than 3 months." Maybe it will work for some of them. The key for it, AUT00063, or any other drug is getting them approved so they can be used.

One of the things that I find frustrating as I look at tinnitus trials of drugs and other potential treatments (and something that concerns me as we await the announcement from Autifony) is that relatively small sample sizes make it hard to discern any positive effects that may exist for sub-groups. The problem is that in order to show efficacy, they are looking for an average effect across the entire sample of people. Through exclusion restrictions they try to get a relatively homogeneous group - and presumably the one that they think is mostly likely to benefit from the drug. However, it is possible that even with that attempt, a subgroup could experience positive effects even if there is no positive effect on average. The reality is even more complicated because it may be impossible to identify who may benefit even though some people do. This is likely to be true even in after-the-fact analysis where you know who benefited and go back to try to figure out what they have in common. This seems to be the case with antidepressants.

Anyway, just a few thoughts as we wait.

 

[Richard zurowski]

We are all aware that Autifony is history.

 

[Danny Boy]

We are all aware that Autifony is history.

I wouldn't say it's over....Dr. Large is very intelligent. They can make changes to the drug or create something new. I wouldn't say it's over for Autifony yet. Look, let's see what happens.

 

[Richard zurowski]

Wish I had your positivity Danny.

 

[Jay_Dee63]

Do we know for sure that the trial shut down because AUT00063 is not effective? Attheedgeofscience seems to hint that the trial is over for this reason, but won't say yes or no. The calls that Danny Boy made indicate the trial is still going. The letter that David Ho received indicated the trial is over. Do we really have to wait until Autifony posts something on their website to find out for sure?

 

[Richard zurowski]

Yep looks like we have to?

 

[Danny Boy]

Wish I had your positivity Danny.

I'm hopeful because the trial was a mess...I mean 28 days wasn't a long time, even trobalt took a few months to kick in. Anyway, let's see what happens.

 

[swc5150]

Maybe I'm looking at this from a different angle, but if the trail was supposed to end in Dec anyway, and they need a full 28 days for a trial member to sample the drug, isn't this about the time they should be shutting it down to new candidates? I am surprised though that a potential candidate would receive a call or letter from a trial administrator stating it's cancelled due to efficacy issues. Whether that's accurate info or not, I'm sure Autifony does not want any info made public by anyone other than them...regardless of results.

 

[Neilpk]

I just thought I'd let you all know that they have stopped taking candidates for AUT00063.

The reason I know this is because I had an appointment set for later this month. I just received a phone call this morning from Autifony saying they are not accepting any more candidates for this trial.

I am guessing it means one of two things 1) they have completed the trial or 2) the trial has just been aborted.

Let me clarify... I did NOT get a call from Autifony. The call came from the hospitals Hearing Biomedical Group.

Specifically the research admin assistant. They gave me no other information except that they are not recruiting any longer.

 

[jeannie]

ATEOS, talked to someone from autifony and they said it was being stopped according to plan, not because lack of efficacy,so lets see what they have to say........

 

[attheedgeofscience]

ATEOS, talked to someone from autifony and they said it was being stopped according to plan

I don't recall stating that. That conversation was with the Birmingham unit (which is part of the trial - not Autifony).

 

[Silvio Sabo]

I thought about that seriously and realized, fuck no, my tinnitus is loud and over everything, but I enjoy my appendages too much lol

The thing with this thing is I can't enjoy things anymore. I can't watch a movie, read a book, sit on my computer and write some code or anything without it bothering me. If I sat in a wheelchair I would still be able to do all those things and ENJOY them.

I used to play football (or soccer in USA) but I quit that years ago when my knee gave up on me so the loss of my legs wouldn't be that big of a deal if I could trade it for getting rid of tinnitus.

Don't get me wrong it would still suck not being able to walk or do the doggystyle in the sack but I'd still prefer that over this.