MemberI called another site and they said they had a phone call from Autifony and they said to stop recruiting, because they are investigating the data. Well, this is all very strange.
Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus
- Thread starter attheedgeofscience
- Start date
We can always hope. But if one reads the post from @David Ho they clearly state it's due too poor results. Let's hope they are wrong and that Autifony has different news coming.
Could be that the trial has ended because they full and are investigating the data.
That would make sense. The data is supposed to be analyzed by December 2015 according to clinicaltrials.gov.
monacco
Member
May be it's part of the business secrets they did it to discourage others companys who want to work on the potassium channel.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
I also called the Birmingham unit this morning (several hours ago) and the lady I with spoke said the same i.e. they are stopping the trial. Then I asked: "Yes - but are you stopping according to plan, or, because of lack-of-efficacy?" and she replied "According to plan."
And that's when I called Autifony. And like I said in another post several pages back already, I am not going to relay the conversation in detail - except to mention that the website will be updated very shortly. But... I know what was said in the conversation with Autifony (obviously), and think about it: as a company, would you announce something while the trial is still ongoing. Probably not, so...
In addition, I can mention that the lady at the Birmingham hospital was not the person normally in charge (she said).
Lot of speculation today - despite pleas for the opposite!
I am not very happy about it too, but if we have to wait, we will wait. After i got this i was hospitalised for a week. The doctors tried to find whats the problem with me and the send me to neurology for a brain tumor check. So I was standing outside the neurologist office, pretty stressed and upset and suddenly I realised that I am standing among people in a wheelchairs, half-paralyzed people that barely can move half of their body after a stroke, people in a far worse condition than mine. This is the best therapy i got (ok and vinpocetine intravenious). I could be far worse, so 5 years, 10 years, we can wait, it sucks, but we can wait.
But i dont know how bad is your T, so excuse me if this offend you. Mine is moderate, some days mild, sometimes severe.
So how come he got this email and Danny Boy phoned the hospitals and they said different stuff- sounds like a completely unprofessional lot to me................so ATEOS got a different reply.......I dont understand why David would get such a categoric reply stating that the drug had not been working.....ATEOS obviously now knows something.....and if a message is about to be posted then it means that the trial has failed.............David Ho said:
Well, it's all very confusing. I got told differently from different sites. To be honest maybe the KV7 channels are the key to victory. Or maybe a needle to the ear? Is AM-102 for chronic sufferers? I just feel sorry for everyone, as Trobalt did actually work, for me and others.
@attheedgeofscience
Would you please clarify:
"As a company, would you announce something while the trial is still ongoing, probably not so..."
should we panic or start opening a bottle of champagne???
Would you please clarify:
"As a company, would you announce something while the trial is still ongoing, probably not so..."
should we panic or start opening a bottle of champagne???
monacco
Member
the best scerio to imagne is that they stoped the trial quickly and they are going to prépare a fast tracked
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
We should wait for an update from Autifony. And that's all I will say in this matter.
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!
monacco
Member
some people can not wait especialy those who had tried retigabine before
if I live in england I'll move to the company headquarters to get information.
Remember there were also people here (I remember at least one) who had no benefit in the trial. And we all speculated (whishful thinking) he got a placebo. And we know people who had benefit from Trobalt, but others not. I have read somewhere that T can have 400 root causes. So how should one "silver bullet" cure them all?
That the trial is closed because of analyzing data does not make much sense to me. Because they analyze the data on a regular base and they know very fast if they have something useful in their hand or not. If a drug would have solved my T, I would have kissed nearly everyone in the hospital and everyone would have known it.
So if I am positive, I would say they have enough data and continue with phase III. Or they will modify the drug or whatever.
If I am negative and realistic, I would say that we have lost one hope. No one will spend more money onto something which is not working.
I think that my T is a poor brain (hyperactive neurons) issue. And I would have benefitted from it.
Keeps me with deciding to live with it or to experiment with epilepsy drugs.
But let's wait for more official information.
Thanks ATEOS for all your efforts, as always.
That the trial is closed because of analyzing data does not make much sense to me. Because they analyze the data on a regular base and they know very fast if they have something useful in their hand or not. If a drug would have solved my T, I would have kissed nearly everyone in the hospital and everyone would have known it.
So if I am positive, I would say they have enough data and continue with phase III. Or they will modify the drug or whatever.
If I am negative and realistic, I would say that we have lost one hope. No one will spend more money onto something which is not working.
I think that my T is a poor brain (hyperactive neurons) issue. And I would have benefitted from it.
Keeps me with deciding to live with it or to experiment with epilepsy drugs.
But let's wait for more official information.
Thanks ATEOS for all your efforts, as always.
monacco
Member
I think the only answer is trobalt now..................or TRT and back to that!
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Listen... I work (unpaid) with researchers in the background - just today my most regular contact confirmed to me that "Trobalt is interesting" (at the moment we are collecting data here on TT with specific volunteers for in-depth analysis - but no one knows as it is not announced). If the following update on the social media from Team Trobalt many months ago had been shared/rated as requested, it is quite possible that we would now be in a different situation. We did within Team Trobalt a massive publicity campaign to get attention for the cause. Hundreds of hours of work... Whether people realize it or not, Team Trobalt has done a fantastic job (and those are not my words, but the words of some of folks who observe what is going on here on TT...!):
There was a unique opportunity to help spread the word by a simple click of the button. Not asking for financial donations or anything. But... A SIMPLE MOUSE CLICK!!!
As I see it, the tinnitus community has failed itself, and, has itself to thank for it. And I truly mean that. And this is just the beginning (unfortunately).
attheedgeofscience
12/OCT/2015.
I think that on Facebook there is a big chance that any news might get lost in someones news feed. I for one surly miss 90% of things on Facebook just because my feed is literately flooded everyday. I for one did not see that post, or many of the posts that was made through Tinnitus Hub.
I think there is a possibility that not all of the members of TT have found their way to the Facebook page. Heck I bet there are people on this forum who don't even have Facebook or Twitter.
I liked the TT thing on fb ages ago and I have TT appear on my fb page.....
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
During the evolution of this thread...
www.tinnitustalk.com/threads/retigabine-trobalt-potiga-%E2%80%94-petition-to-the-ata.6896
...there were at least 5 internal alerts generated for various posts - all of which one way or another linked to the activities of Team Trobalt and the team of professors in the USA. In addition, updates where done in newsletter material that was e-mailed to all members, and I believe there was also a banner put up (but I am not sure any longer). And besides that the updates themselves were announced on both Twitter and Facebook. Trouble is: if the +100k visitors of TT do not sign-up to become members, we cannot engage them (except with a banner that will be visible to everyone).
There is no way you - and others - could not have known... unless you purposely choose to not get involved (e.g. certain members have their internal alerts disabled). For instance, the ATA thread was pinned (so that you would have seen the updates the very minute you click on the "Treatments" section). In addition, members should have paid attention to the Team Trobalt badge that certain members have/had. It means something. But of course +80% of members would rather spend their time debating instead of listening to those very few who are truly well connected with researchers and have a strategy of what to do.
attheedgeofscience
12/OCT/2015.
Well I'm sitting down at this moment and my T !! Oh how I hate that word!!!! Screaming in my head feeling well down I realy had high hopes on this drug. It's hard to pick ones self up again.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
I returned to TT to collect some behind-the-scenes data. And as can be seen from this update...
www.tinnitustalk.com/threads/auris-medical-the-first-corporate-sponsor-of-tinnitus-talk.11325
...I have also been doing other things. But all of it with a more focused, less visible, presence to help (in some small way).
I have not had any contact with the team of researchers from the US since 4-5 months. And I do not necessarily have any intention of "returning" - as I say I am here to do stuff behind the scenes. In addition, the tinnitus community has proven endless times that it is not possible to galvanize itself. And since the biggest asset TT has is its number of members, well, then... it is difficult to achieve anything (if the masses to do not engage themselves).
Even with something as simple as a mouse click. Sorry but this is the reality...!
Well I think not all members enter this site everyday. I don't at least. Sometimes I try to stay away purposely because I start thinking of my T. more and the annoyance of it goes up. I try to put my mind into thinking of other things and try to stay busy. But it doesn't always work. It's not easy to go any longer periods of time without thinking of it when it's screaming inside your head. But I guess we all can relate to that.
I am studying above full time (150% of full time studies) at a University while at the same time working full time so my days can get rather full with other things. And that's a good thing because I would be thinking of my T. all day long otherwise.
When I do get in to TT I usually just check for alerts and maybe occasionally go into the research section to look for a new post. I have a few posts that I follow - this one being one of them - and that's it! I surly miss A LOT of posts on this forum. I don't think I've ever visited other sections other then "Research" and "Treatments". Perhaps once or twice I might have been to some other section when I first signed up.
And I don't think I'm alone in this kind of behavior. I think it's a bit unfair that you are trying to make people feel guilty. But as I said it's hard to stay up to date in everything and view all posts on here.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
FounderActually @attheedgeofscience explained quite well how we've alerted people to important posts (site-wide alerts, banners, email newsletters, social media updates); I would say it is pretty much impossible for someone who visited during those times those updates were sent out to have missed out on them.
It's less than 0.1% of our visitors that are interested in engaging in the aforementioned matters which @attheedgeofscience stated.
Our community is great, no doubt about it. There is a need for support and we fill that space. We have great members offering wonderful support.
But when it comes to this, there is no denying it; the tinnitus community at large seems relatively apathetic.
But it doesn't make sense. If there are only 3 people who have liked the post that ATEOS has linked above. Where you and him among those 3 then? If that is so then there is basically only one person that is not either staff or a member of Team Trobalt that has liked that post!
Isn't there more then 3 people that are either members of Team Trobalt or Staff?!
I just can't believe that it would be so few. I mean the facts are there but it's just staggering that it would be so few! I'm amazed!
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