Vote for University of Michigan (Susan Shore) Tinnitus Research — Winner Gets a Write-Up

Here's last year's write-up.

https://www.statnews.com/2018/04/02/dying-hearts-stat-madness-crowd/

 

Indeed the fact of the matter is that Tinnitus Talk is a major stakeholder in this write-up. It is the primary representation of the online tinnitus community. Tinnitus Talk's voters are also the main reason why Susan Shore's research won. It does have a reasonable right to request to see advance copy of the write-up and to offer feedback on it.

The last thing we want is for all the hard work of the tinnitus community to result in a write-up which repeats some of the "it's not such a big deal" "nearly everyone habituates" cliches which are so prevalent in online tinnitus information. Hopefully that won't happen - but Tinnitus Talk can play a big role in making sure it doesn't.

 

I think it is the write up. It’s also on the top of their page as you log on into STAT (shivers saying that name ).

I’m not sure what to make of the actual article, it was quite short and didn’t really say much or am I just being too negative on the piece? It did mention that tinnitus can be debilitating for some which is good that it wasn’t just “oh most people get used to it”.

I suppose exposure is exposure eh

They did mention Baylor’s recount and getting disqualified though

 

Yes it looks like the article. At least it doesn't seem to repeat the "nearly everyone gets used to it" cliches and does reference the 15% of the population have it and for "2 million" (in USA) disabling. A pity Tinnitus Talk wasn't consulted but thanks for the hard work making it happen.

 

I agree with you, Jcb. If that was the article then it’s a bit disappointing as they haven’t covered anything that’s not already out there in many other news articles. The world essentially received this update in January 2018.

I thought they’d be a lot more probing, and any one of us could have written that, to be honest.

Hopefully, this is just a story before the article is officially presented.

 

I hope it is just a pre-story Ed and the actual article is up today, it seemed a bit “muh” again I’m not being negative but as you said even one of us could wrote that up including myself and I write like like a toddler.

But exposure is exposure as I said, so hopefully we can build on this.

 

That’s crazy. Well, all I can say is that I’m very disappointed in the final article. There was too much included about the competition itself (self-promotion) and the side-story of Baylor being disqualified was irrelevant and served no purpose.

Where was the cutting-edge, exhaustive journalism? It was extremely trivial and could have been written during one’s lunch hour with minimal research. I expected probing questions and deep meaningful insights that would challenge the worldview on tinnitus. Was Susan Shore even contacted? They certainly didn’t utilise her input effectively if she was because the largest direct quote was taken from a paper in Science Translational Medicine.

And why include Utah’s work in the same article? Their project probably got more of a mention than Shore’s work did.

 

A bit disappointed to see that she didn’t seem open to include Tinnitus Talk/Tinnitus Hub. She clearly saw your video. But let’s not get discouraged, we can still create the kind of media coverage regarding tinnitus that we‘d like to see. Whether that’s by posting on Twitter, Facebook, writing articles or blog posts, making videos or reaching out to journalists, etc.

 

Lol... Oh no!

I understand. I am just grateful that because of our efforts here on Tinnitus Talk, this article is on top of the STAT News website right now. And yes, at least it didn't have any of those phrases like "people get used to it after a couple of days." (exaggerating now) Grrrr.

It was vague, in my opinion. I wish they would have talked about the urgency and need of this device as there is no other cure/treatment like this for tinnitus patients. And how this device will be a medical breakthrough for millions of patients around the world, not only USA.

Absolutely! And we know what we did here and so does Susan Shore! And I hope, Neuromod takes notice of what we've done here. Maybe this will get them moving on the MuteButton a little faster or Markku's Angels are going to win it! hahaha. We have to keep positive.

@Markku, @Ed209, any writers in the house?? Maybe someone here can actually write an article on University of Michigan winning this competition, their research, and what we as a community did here to help them win?

I am extremely proud of all of you here. Thank you for stepping out and making a difference.

Once

 

This!

No cutting edge journalism here. Can somebody here top this article!?

 

Great minds think alike!

Let's do it! Anybody that wishes to write an article can submit it to you and then you can pick one or combine them to make one really great explosive article??!!

Strike while the iron is hot!

 

I was going to propose the same. I think we should launch our complementary article, letting everyone know what this means for the tinnitus community, how disabling this condition can be, and how exciting news this is for all of us.

It could be posted on Twitter and tweeted to STAT News and Shore's Lab.

I think it would be interesting if a manager of Tinnitus Talk congratulated Susan Shore on behalf of all of us, and let her know that we supported them but that they won due to their amazing innovation and we are by their side to support them in whatever capacity they need.

Let her feel the support of millions of people in the job they are doing!

 

@Hazel already did this. Post #978.

 

@Markku & @OnceUponaTime, my point was if Susan Shore knew about the video. If she does, that is great news.

 

It didn't do any probing - that's clear from how quickly the article went up - but the point of this competition was to draw attention to the need for tinnitus research, and I think we did that.

It's been put in front of scientific minds - hopefully it will inspire some of those minds to find out more and get involved.

I think a write up by one of us here would be a great idea. We wouldn't be doing it 'better', we'd just be coming at it from a different angle.

As long as the STAT competition is heavily mentioned, we could even send it to STAT and they may put it up on their website as well, or at least retweet it.

 

I do not want to bring the whip out. (I'm exhausted).

On my 1st cup of coffee and have science class in a few minutes... Ughh.

But to all the writers in the house, please report for duty!

Once

 

This sounds like a great idea Now where’s all the amazing writers?

 

@Markku @Hazel I would love to see a more in-depth look at what Susan Shore is actually doing, all the work and progress so far and hopefully what it can do to help us. How it is so important to have more emphasis on finding a cure and not just “coping methods” which seems to take up most of the “coverage” we get.

Selfishly I would like see how Tinnitus Talk came together and made this happen, I’m so proud of what we did and how hard we all worked with the voting. It may not be the biggest exposure but we still have some exposure which is amazing and more so that it’s not another TRT type of coping method being flogged in the media.

I don’t know whether this would be off topic or not but maybe all the promising devices, the tests and experiments being done for hearing loss and things like this.

 

So have they successfully reduced people's tinnitus in their experiments yet?

 

Except that sweet sweet write up...

 

Are you joking?

 

I can't tell if you're joking or not?

 

Exposure is exposure I guess. I’m glad it got written, but it has the feel of a summation of easily findable information from an internet search. Maybe that’s the difference between a “write-up” and an “article”.

I guess I was hoping for more about the daily struggle we face with this. Looking back now I realize that STAT Madness is a website about biomedical research and not about the suffering of the human condition.

If anything it reinforced how far behind Dr. Shore is in human trials compared to Neuromod.

 

I'm not. To be honest I havent really been following her research. So I guess the answer is yes. Shame on me, I'll do some reading.

Now my question is how far from an available treatment is this?

 

Another larger clinical trial will yield results next year, Shore said. She holds a patent on the device. “It’s always hard to predict how long commercialization can take, but I would say if we get as encouraging results in the next trial that we will work very hard to get this to people.” - from the article

Neuromod is also based on bimodal stimulation and wants to launch their device this year in certain European countries and next year in the US.