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

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Mar 12, 2019.

    1. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

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      Allergies or Acoustic Trauma, Stress
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    2. david c

      david c Member

      Tinnitus Since:
      01/2012
      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.
       
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    3. Markku
      Inspired

      Markku Founder Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
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      Michigan tops STAT Madness voting with a potential treatment for tinnitus

      Is this the actual article already?

      It seems quite long for just announcing the winner. And it looks similarly written/styled as last year's STAT Madness winner's article (which @OnceUponaTime linked above). So my suspicion is that this might be it.

      We were unfortunately not asked for any comment on this - it was indeed our plan to try and get the community's significant efforts recognized in the published article, but apparently the journalist (STAT's Elizabeth Cooney, Twitter @cooney_liz) decided not to include that angle. Which of course is the journalist's right if they feel it doesn't fit the narrative.
       
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    4. Jcb
      No Mood

      Jcb Member Benefactor

      Location:
      UK
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      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      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 :eek:).

      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 :LOL:
       
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    5. david c

      david c Member

      Tinnitus Since:
      01/2012
      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.
       
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    6. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      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.
       
      • Agree Agree x 8
    7. Jcb
      No Mood

      Jcb Member Benefactor

      Location:
      UK
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      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      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.
       
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    8. Markku
      Inspired

      Markku Founder Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
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      Syringing
      The journalist, Elizabeth Cooney, confirmed the article was indeed the result of the competition, and it concludes the STAT Madness coverage...


      elizabeth-cooney-stat-news-madness.png
       
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    9. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      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.
       
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    10. Autumnly
      Wishful

      Autumnly Member Benefactor Hall of Fame

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      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.
       
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    11. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
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      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. :LOL: :ROFL: 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
       
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    12. Markku
      Inspired

      Markku Founder Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Interesting you posted this idea just now, as I'm currently on a Skype call with @Hazel and five minutes before your post I suggested what if we did a write-up on Shore's work, this competition, and how the community got involved so successfully.

      We do have writers. Hazel is an excellent one, but her task list is very long at the moment.

      @TuxedoCat is also a fantastic writer - she's been helping us with various projects.

      Maybe we can get this done. I'm all for this.
       
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    13. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
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      This!

      No cutting edge journalism here. Can somebody here top this article!?
       
      • Good Question Good Question x 2
    14. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
      New York
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      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!
       
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    15. Amv

      Amv Member

      Tinnitus Since:
      16/7/2017
      Cause of Tinnitus:
      -
      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!
       
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    16. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
      New York
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      Allergies or Acoustic Trauma, Stress
      @Hazel already did this. Post #978.
       
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    17. Markku
      Inspired

      Markku Founder Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      We've already done this, and she's also aware of the video Hazel did:



      Dr. Susan Shore has never been anything short of an exemplary academic, and she is very recognizant of this community's efforts and how people are rooting for her, as well as the wide-reaching consequences tinnitus can have on a person's life.

      That's one way of doing it! Another option is to coordinate efforts by forming a group of interested and capable writers, and that group then takes on the project (which is not only writing but also researching, getting quotes/answers, etc, well, whatever usually goes into an exhaustive journalistic piece).

      I'd welcome everyone to write their ideas here in the thread, what the article should consist of - how to draft it so that it's the article all of us think Dr. Susan Shore and her team deserve.

      Crowdsourced journalism at its best!
       
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    18. Amv

      Amv Member

      Tinnitus Since:
      16/7/2017
      Cause of Tinnitus:
      -
      @Markku & @OnceUponaTime, my point was if Susan Shore knew about the video. If she does, that is great news.
       
    19. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
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      ???
      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.
       
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    20. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
      New York
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      Allergies or Acoustic Trauma, Stress
      I do not want to bring the whip out. :ROFL::LOL: (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! :D

      Once
       
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    21. Jcb
      No Mood

      Jcb Member Benefactor

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      This sounds like a great idea :D Now where’s all the amazing writers? :whistle:
       
    22. Jcb
      No Mood

      Jcb Member Benefactor

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      @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.
       
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    23. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

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      here
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      So have they successfully reduced people's tinnitus in their experiments yet?
       
    24. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Except that sweet sweet write up...
       
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    25. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Hall of Fame Advocate

      Location:
      United States
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      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      Are you joking?
       
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    26. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
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      1990s
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      I can't tell if you're joking or not?
       
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    27. spedgas
      Depressed

      spedgas Member Benefactor

      Tinnitus Since:
      09/2018
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      Unknown
      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.
       
    28. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      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?
       
    29. Hazel
      Dreaming

      Hazel Director Staff Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
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      10/2017
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      one-sided hearing loss (of unknown origin)
      Yes, we did just that! And also proposed the follow-up article. Awaiting her response now.

      We've asked Susan for that, hope she'll agree!

      Yes, good idea!

      Yes, we made her aware of it in the abovementioned email to her that we sent out today!
       
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    30. Autumnly
      Wishful

      Autumnly Member Benefactor Hall of Fame

      Tinnitus Since:
      July/August 2013
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      Noise induced
      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.
       
      • Like Like x 1
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