Let's Increase Tinnitus Research Funding in the US — Our Input for NIDCD's Strategic Plan

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Mar 7, 2020.

    1. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Yes! Easy peasy! :)
      Did you submitted your answers, Jay?
       
      • Like Like x 5
    2. mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      The last thing I want to do is overwhelm people with more information but I added this to question 2 in my personal response, in the interest of transparency.

      1. There is far too little consideration of the tinnitus population for admission into clinical trials. Companies often look for far too stringent of criteria to allow access into clinical trials. Tinnitus is almost unanimously considered a symptom of hearing loss and should be treated primarily as such.

      2. Diagnostically speaking, the current "national standard" for detecting hearing loss (250 Hz-8 kHz audiometric testing) is archaic and unacceptable. Patients presenting with sudden onset tinnitus should be treated primarily as sudden-sensorineural-hearing-loss (SSNHL) patients and should be administered extended pure-tone audiometric testing (up to 20 kHz, with additional analysis paid to hearing symmetry, especially in respect to unilateral hearing-loss/tinnitus cases) to test for outer hair cell damage/loss, in addition to being tested for potential cochlear synaptopathy, which chiefly manifests as difficulty perceiving speech in the presence of background noise (speech-in-noise testing). Patients failing testing that are in the acute window (<1 month since onset) should be afforded steroidal treatments (high dose oral prednisone and/or intratympanic dexamethasone) to best ensure hearing recovery. SSNHL needs to be better recognized as the medical emergency that it truly is.

      3. I would also like to see better conducted research on the treatment of acute (<1 month) tinnitus/SSNHL with the steroidal treatments listed above. This research would be incredibly easy to conduct with how prevalent both conditions are.
      Example: Intratympanic Dexamethasone and Oral Prednisone in the Treatment of Acute SSNHL and tinnitus.
      -Hold a conference for PCP’s and GP’s to raise awareness about referring patients with these complaints to trial centers and stress the need for immediacy (<1 month since onset)
      -Conduct extended pure-tone audiometry and speech-in-noise tests at baseline
      -Record time of patient registration relative to onset
      -Deliver the drugs on whatever dosing schedule appears most prudent (usually once/week injection and a high taper of 60mg prednisone for 10 days down to 50/40/30/20/10 over the course of a month)
      -Have patient follow-up testing at 1-month, 3-months, 6-months and 12-months post-administration
       
      • Winner Winner x 5
      • Like Like x 2
    3. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      Done! Huge thanks to the volunteers for all the time they put into this excellently researched template! I'm more pumped up than ever to continue lending my own skills to Tinnitus Talk (which you should all consider too ;)). Let's make some change happen!
       
      • Winner Winner x 10
    4. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Done
       
      • Winner Winner x 7
      • Like Like x 1
    5. Adi

      Adi Member

      Tinnitus Since:
      1998
      Cause of Tinnitus:
      Noise induced
      Done!
       
      • Winner Winner x 5
      • Like Like x 1
      • Informative Informative x 1
    6. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Yes!!!! Thank you, MrCrybaby!!! I'm still waiting for your picture on the photo album thread, Mr. :watching::LOL:

      Thank you, Martin! :huganimation:

      Gracias, Adi!! Thank you! :thankyousign:
       
      • Agree Agree x 1
      • Friendly Friendly x 1
    7. Selah1281

      Selah1281 Member Benefactor

      Location:
      Bustown, OH10
      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      Done.
       
      • Winner Winner x 7
    8. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Take Action Now!
      This is HIGHLY Important!
      GettyImages-462420509-805effbc22a14ac2adc819fe907accda.jpg


      The National Institute on Deafness and Other Communication Disorders (NIDCD) is interested in hearing from you about your concerns with tinnitus. They are collecting information to develop a new strategic plan which will be implemented in 2022.
      The new strategic plan will influence the level of funding they will request through NIH and ultimately from Congress and the President, for tinnitus research.

      - Everyone can submit their answers.

      - It only takes a few minutes to fill out the form. We have provided a template with some answers that you may cut and paste or you can submit your own answers.

      - We have a deadline of March 31, 2020.

      This is your chance to help and make a difference.


      there-is-strength-in-numbers-quote-1.jpg

       
      • Winner Winner x 8
    9. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      We need more people sending out their answers and reporting back, please.
      If you do not understand how important this is or if you have any questions,
      please feel free to ask away.


      7ad9c429af8ba13526f1913931935b90.png


       
      • Winner Winner x 2
      • Agree Agree x 1
      • Hug Hug x 1
    10. aot
      Artistic

      aot Member

      Location:
      USA
      Tinnitus Since:
      2016. Worsened 11/2019
      Cause of Tinnitus:
      Probably sound induced.
      People, this is a special opportunity that can't afford to be missed!

      We as a community say that we want tinnitus to be further recognized, and now is a chance to help make it happen.
       
      • Winner Winner x 3
      • Agree Agree x 2
    11. Bambam0
      Cool

      Bambam0 Member Podcast Patron Benefactor

      Tinnitus Since:
      2/2018
      Cause of Tinnitus:
      Rock N Roll
      Done! Thanks @Hazel for organizing!
       
      • Winner Winner x 7
    12. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Thank you so much for helping out!!! :woot:

      Hey, Bambam0. Thank you for taking the time and sending your answers. :) (y)

      Thank-You-Cat.gif
      C'mmon, we need more people doing this!!!!
      It only takes a few minutes.
      Let's Go!!!!!
       
    13. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      It's like pulling teeth here...bahaha… :LOL::ROFL::ROFL: time.gif


      I want to see more...
      done.png images.png
       
      • Agree Agree x 2
      • Funny Funny x 1
    14. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      • Agree Agree x 1
    15. Howiow

      Howiow Member

      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Acoustic trauma, sinusitis. Unilateral T
      Done.
       
      • Winner Winner x 8
    16. Jaysterk
      Blah

      Jaysterk Member

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Neomycin
      Not yet. I've been busy with Law School work but I will either tonight or tomorrow!
       
      • Like Like x 1
    17. Jaysterk
      Blah

      Jaysterk Member

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Neomycin
      • Good Question Good Question x 1
    18. Ten Letter Word

      Ten Letter Word Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Bar Concert
      Done!

      For question 1 I added an intro covering my situation in a few sentences. And for the rest of 1-5 I copied bits and pieces from provided answers that I thought were strongest and fit well together.

      Thanks for the clear instructions, made it very easy! (y)
       
      • Winner Winner x 5
    19. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Done. A huge thank you to everyone that worked on this initiative, the prepared answers helped me immensely!
       
      • Winner Winner x 5
      • Agree Agree x 2
    20. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      This process is open to anyone! So yes, please ask your friends and relatives to make a submission as well, excellent idea :)
       
      • Like Like x 1
      • Agree Agree x 1
    21. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Yes, please do share the link with your family and friends.
      Share it on social media.
      Anyone can submit their answers wether they have tinnitus or not.
       
    22. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Ahh..just what I like to see when I wake up! :) DONE!
      Hahaha...thank you @Ten Letter Word!
      I did the same thing. An intro on how I got tinnitus and how it affects my daily life. Then I copied and pasted the answers I wanted from the template. Super easy.

      @Autumnly I was waiting for your: Done! haha... :LOL::ROFL:
      Thank you for always helping around here.
      :huganimation::huganimation:
       
      • Like Like x 3
    23. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Done! Had to fight against my occasional tendency to wait until the last minute but this is too important!
       
      • Winner Winner x 6
    24. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      Done.

      I remained consensual by taking the verbatim of the templates*. I added as the beginning of question 1: "I wanted to talk about tinnitus. I got it seven years ago due to a noise trauma. I am also a member of the forum www.tinnitustalk.com". I gave my name and my email address to give more credibility.

      As a Frenchman, I thought I would wait until the last moment to do it, and let our American friends do it first, but then I changed my mind. Come on guys, 30,000 members on this forum of which 50% are American, we should normally flood the mailbox of the NIDCD.

      *I would have painted a darker picture of this condition (like tinnitus can lead to suicide, not only to suicidal thoughts). But congratulations and many thanks to the team that wrote the templates; great job!
       
      • Winner Winner x 4
      • Like Like x 2
    25. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      Can we see about having this post pinned in the support section as was done for Tinnitus Week @Markku? I feel like many people could be missing it here, the support section has much higher traffic.
       
      • Agree Agree x 4
      • Like Like x 1
      • Useful Useful x 1
    26. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Very good idea. Done!

      I want to see more regular members of ours doing this, it takes so little effort...

      :thankyousign:
       
      • Like Like x 1
      • Agree Agree x 1
      • Winner Winner x 1
      • Optimistic Optimistic x 1
    27. mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Just an FYI for everyone that may be having difficulty receiving the automatic response confirming form submission—symbols are disallowed but appear to register properly in the system anyways. I reached out to the address provided at webmaster@nidcd.nih.gov and received this in return:

      DAA8655A-C308-41B7-8809-256BFA4851BA.png
       
      • Informative Informative x 7
    28. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      We discussed this within the working group and opted to stick to evidence-based information at population level, where there is no strong evidence (that we could find) of a causal link - some studies were done but with contradictory results. There is however strong evidence that tinnitus increases the probability of suicidal thoughts, so we went with that.

      That said, of course, everyone is free to explicitly state in their submission that tinnitus can lead to suicide, and we've certainly seen real live examples of that here (sadly).
       
    29. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      Thank you, FGG!!! It is so important and we only have 2 more weeks before deadline.
      Thank you, Frederic! You would think more people would be running to submit their answers.
       
    30. aot
      Artistic

      aot Member

      Location:
      USA
      Tinnitus Since:
      2016. Worsened 11/2019
      Cause of Tinnitus:
      Probably sound induced.
      Right!?

      Come on, people. It takes less than five minutes.
       
      • Like Like x 2
      • Agree Agree x 1

Share This Page

Loading...