Member- Jun 6, 2013
- 1,373
- Tinnitus Since
- January 2002
- Cause of Tinnitus
- Dental Surgery
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Alex Matyjasek
Member
- Nov 6, 2017
- 177
- Tinnitus Since
- 26-9-2017
- Cause of Tinnitus
- Unknow possibly noise trauma
In the Research News section.
https://www.tinnitustalk.com/threads/your-questions-for-dr-josef-rauschecker-interview.32628/
I swear Markku and Steve are doing much more for us sufferers with their forum and interviews than the ATA, BTA and all other worthless "advocacy" organizations combined. Do those orgs actually do anything apart from having a shitty website and taking donations?
FounderAcknowledging this is something that many people are looking forward to, here's something of an update:
We were asked to sign an agreement in relation to the Q&A video, which we are signing today (Tuesday). After this, depending on how swiftly Neuromod is able to process it, I am able to edit the footage. After I am done, and before publishing it to the public, Neuromod will review it. If any changes need to be made, this adds another round to this process.
On my end there will be no delay. If need be, I will be working on it in the middle of the night. But this process of agreements and reviewing does add delay to it which is outside of my control and therefore I cannot guarantee when it's published.
I will keep everyone posted.
I feel nauseous right now with excitement and worry that this may finally be a treatment for tinnitus. Either I will be devastatingly crushed when the device launches and it doesn't work, or over the moon that the first step toward more and better treatments is here.
Thank you Markku!
Neuromod seems to be moderating the Q&A video quite heavily. I will say that I am curious as to why that is.
I think it has to do with the fact that they have to be careful with what they say due to peer review. They don't want to affect that process. This may mean that we again won't be getting the information we wanted (statistics, studies, detail about the product and how it works) and get more generalized information that we already knew.
I seriously hope I am wrong.
I imagine that might very well be because the clinical trial paper is still in the peer review stage, and they want to make sure that the published video contains no information that could harm that process, etc.
I do understand the sensitivity and careful measures around it.
What I can't get my head around is why releasing any information would harm a peer review. They are going on like they want to make sure they get an unbiased jury for a case and to keep everything out of the news...
If they can't release the scientific basis on which a machine is based and yet still want people to purchase it... then to my mind this is worse than corrupting the peer review.
Best to wait for the peer review until launch I would say if that's the case...
I can't imagine that the New Dyson Vacuum Cleaner would be going to market with no clear info on how it functions because there is an upcoming article in Hoover Monthly.
No-one should buy this device until the science is clear - Feel free to chime in @neildegrassetyson...
If they can't release the scientific basis on which a machine is based and yet still want people to purchase it... then to my mind this is worse than corrupting the peer review.
Best to wait for the peer review until launch I would say if that's the case...
I can't imagine that the New Dyson Vacuum Cleaner would be going to market with no clear info on how it functions because there is an upcoming article in Hoover Monthly.
No-one should buy this device until the science is clear - Feel free to chime in @neildegrassetyson...
I was also thinking about this. They mentioned an Ireland release date of January 2019, but they also mentioned peer review won't be finished until the end of Q2 in 2019.
So are they going to put it on the market, but not tell anyone statistics or science behind it because of peer review?
I can only imagine they will delay release until peer review has concluded.
Me too... Is there anyone here (scientist etc) generally familiar with the peer review process that can enlighten us?
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
- https://ieeexplore.ieee.org/abstract/document/6428623
- http://iopscience.iop.org/article/10.1088/1741-2560/11/6/066001/meta
- https://www.nature.com/articles/srep01474
- https://ieeexplore.ieee.org/abstract/document/6610202
Oh because maybe possibly some people are currently in an active trial with Neuromod ties. Just a guess...
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
You don't count your chickens before they hatch. It's also a big FU to the reviewers.
You would think this would be the case. Their device is worthless if it does nothing (it doesn't matter how much they spent developing it). The price tag will be hefty and the science needs to be in and established before a single sale takes place. Right now there is no clear explanation as to how it works bar a few throwaway comments about plasticity - Which is in fact WooWoo. It isn't specific science - It sounds like science that's all. Their website has nothing on it bar photographs and more WooWoo.
The demand for it is desperation among 700 million people.
This has to be acknowledged and we need to be careful.
Also this product was released 4 years ago and then mysteriously disappeared off the market.
Also where is the peer reviewed paper from original launch which people were told was on the way 4 years ago...
Keep an open mind people... That's all I'm saying.
I want this to work but I ain't parting with thousands prematurely...
What is your personal view on Neuromod as someone taking place in the other trial?
Could you elaborate? How does releasing information before the peer review is complete negatively affect the peer review process?
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
Well mid-trial Neuromod hired the PI of my trial. So IMHO, Neuromod figured there was a knowledge gap and they closed it as quickly as possible.
I hope @Steve has some answers to these questions too because while I am totally willing to try something new that is supposed to work I would be incredibly disappointed if it was just a new spooky device that doesn't have any benefit for us but just some extended business plan.
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
Because they still have active trials going on elsewhere. If some one sees that Neuromod is successful, they may start over reporting success during placebo timings elsewhere. This would pretty much ruin the release of an effective device.
We wouldn't want that.
Also during the peer review process... the reviewers will often ask for the data. They are also experts in the field and may point out opportunities for further analysis in your data, or may find flaws. Not necessarily fatal flaws, but if you are running regressions they may ask you to include certain variables or ask why you did include a certain variable. People just don't release data that is silly. Nobody ever releases the raw data to the public.
Data is released in a highly organized, condensed format, such that a person can process and understand it. The raw data would be unusable, even worse, without full knowledge of the interconnectedness it could be easily misconstrued.
Not that I am questioning your knowledge, but how do you know so much? Did you do your own research about this process?
It is rather impressive.
- Mar 1, 2018
- 871
- Tinnitus Since
- birth/ recent spike 2/2018
- Cause of Tinnitus
- Born with ETD, several acoustic traumas, most recently ETD
No, I am a research scientist. A peer reviewed one at that. I have been on both sides of the coin i.e. the reviewer and the one being reviewed.
But thanks! It is (at times) my job.
They recruited both Hubert Lim and Richard Tyler recently. I wonder what their impact will be... They are unlikely to have time to change or tweak whatever is coming out in January, and the paper that is under peer review was produced before so... why did they recruit them? If they had actually cracked it, they would not have needed these recruits.
Maybe this made it into the Q&A
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
I deliberately stayed away from Tinnitus Talk yesterday as the details of the Q&A were never going to be released / circulated immediately. I managed to wait 1 whole day!!
I'm sure everyone else is building this up to be the silver bullet we're all hoping for, but I'm trying not to get too excited. I'm kinda hoping Neuromod are sitting on this and keeping pretty quiet as they know it works, so they're sitting on a potential goldmine and they want to make sure it's done right to maximise their ROI.
I'm sure everyone else is building this up to be the silver bullet we're all hoping for, but I'm trying not to get too excited. I'm kinda hoping Neuromod are sitting on this and keeping pretty quiet as they know it works, so they're sitting on a potential goldmine and they want to make sure it's done right to maximise their ROI.
- Apr 18, 2013
- 1,633
- Tinnitus Since
- 2003
- Cause of Tinnitus
- Flu, Noise-induced, Jaw trauma
Apologies to all for being slow - a day off work means more to come back to, and it's our year end so I have been busy tidying up invoicing (and being shouted at for being the last one )
Markku will likely have access to the raw footage tomorrow morning, my fault. Sorry again... I'm out all day tomorrow at a conference so I won't be able to address any questions in a hurry - although if anyone wants to volunteer to boil subsequent posts and key things you want to know down into an easy to digest set of questions I'll happily answer them.
I haven't read everything but I wanted to say a few things based on some of the things I have read.
This isn't a cure, and they aren't promoting it as one. The most improved of the participants have reported a large effect on their tinnitus, to the point they can barely hear it. The numbers we discussed are better than those I've seen from other treatments, though we do have to wait for the peer reviewed paper to confirm everything. They are reporting based on 12 weeks of treatment then following up at 12 months to measure the lasting effect. There is another trial just completing that will be reported in time, they have to get the 12 month follow up date for this so it will take a while.
The hypothesis is based around lack of auditory input - hearing loss and associated processing in the brain. The tinnitus tone or pitch does not affect the eligibility. The device is calibrated to your audiogram, which needs to be performed by the audiologist. After this you have the device at home and use as required. Because it's to your hearing it's highly unlikely to ever need recalibration. They recommend being in the same country so you have access to the audiologist. If you have profound hearing loss you currently wouldn't be able to use the device.
They have recruited some of the best people in tinnitus research to conduct their trials - Berthold Langguth, Deborah Hall, Hubert Lim, Richard Tyler. I'm confident that the conducting of the research is legit and the results can be trusted. I'm not a fan of getting sued so I won't explicitly point out a different product that enlisted the help of some top people and then (allegedly) suppressed the results - which were not flattering. What we have here to date is an open process, with some of the largest numbers of patients seen in tinnitus trials, ready to be peer reviewed and reported.
I am personally all for any company that enters the tinnitus space and tries to do things properly. One of the things we talked about off camera was the difficulty in getting investment for tinnitus treatments. Investors aren't big on new fields, they like to know there is a proven market (and of course the lack of an objective measure is a sticking point). If this device works then, from a selfish point of view, it makes the tinnitus space something an investor will be more likely to become involved with and increases competition. All good for us patients.
Disclosure: I accepted a sandwich and some hot beverages from Neuromod, which don't bias my views
)Markku will likely have access to the raw footage tomorrow morning, my fault. Sorry again... I'm out all day tomorrow at a conference so I won't be able to address any questions in a hurry - although if anyone wants to volunteer to boil subsequent posts and key things you want to know down into an easy to digest set of questions I'll happily answer them.
I haven't read everything but I wanted to say a few things based on some of the things I have read.
This isn't a cure, and they aren't promoting it as one. The most improved of the participants have reported a large effect on their tinnitus, to the point they can barely hear it. The numbers we discussed are better than those I've seen from other treatments, though we do have to wait for the peer reviewed paper to confirm everything. They are reporting based on 12 weeks of treatment then following up at 12 months to measure the lasting effect. There is another trial just completing that will be reported in time, they have to get the 12 month follow up date for this so it will take a while.
The hypothesis is based around lack of auditory input - hearing loss and associated processing in the brain. The tinnitus tone or pitch does not affect the eligibility. The device is calibrated to your audiogram, which needs to be performed by the audiologist. After this you have the device at home and use as required. Because it's to your hearing it's highly unlikely to ever need recalibration. They recommend being in the same country so you have access to the audiologist. If you have profound hearing loss you currently wouldn't be able to use the device.
They have recruited some of the best people in tinnitus research to conduct their trials - Berthold Langguth, Deborah Hall, Hubert Lim, Richard Tyler. I'm confident that the conducting of the research is legit and the results can be trusted. I'm not a fan of getting sued so I won't explicitly point out a different product that enlisted the help of some top people and then (allegedly) suppressed the results - which were not flattering. What we have here to date is an open process, with some of the largest numbers of patients seen in tinnitus trials, ready to be peer reviewed and reported.
I am personally all for any company that enters the tinnitus space and tries to do things properly. One of the things we talked about off camera was the difficulty in getting investment for tinnitus treatments. Investors aren't big on new fields, they like to know there is a proven market (and of course the lack of an objective measure is a sticking point). If this device works then, from a selfish point of view, it makes the tinnitus space something an investor will be more likely to become involved with and increases competition. All good for us patients.
Disclosure: I accepted a sandwich and some hot beverages from Neuromod, which don't bias my views
Nobody would be happier than I if this device is even half as successful as some of the claims about it. But so many "wonder" audiology devices have been released with all sorts of claims about their efficacy for tinnitus (some apparently backed by research trials), desperate sufferers' have paid large amounts of money for them and have been left bitterly disappointed when they didn't do anything for their tinnitus.
A large degree of skepticism is required - I was concerned by the amount of free publicity this was getting at the recent BTA tinnitus conference - accompanied by some claims that NICE in the UK were thinking about it, which is extremely doubtful.
A large degree of skepticism is required - I was concerned by the amount of free publicity this was getting at the recent BTA tinnitus conference - accompanied by some claims that NICE in the UK were thinking about it, which is extremely doubtful.
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