Tinnitus Week 2020: Focus on Research — Get Involved!

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Feb 1, 2020.

    1. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Major influencer has just tweeted the petition - Olivia Buckland - she has 544k followers!

      olivia-buckland-twitter.png
       
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    2. 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)
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    3. annV
      Fine

      annV Member Benefactor

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      Is American Tinnitus Association supporting the petition? What are they doing?
       
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    4. Nonomat
      Wishful

      Nonomat Member Benefactor

      Location:
      France
      Tinnitus Since:
      06/2019 (mild) - 11/2019 (intrusive)
      Cause of Tinnitus:
      Noise induced
      Sorry, the ATA is too busy posting videos about how life with tinnitus gets better and everything is good.

      8FJBDc6.png
       
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    5. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I have of course signed and donated.

      Here is a list of famous people with tinnitus that really need tweeting etc. I have sent this list to the BTA by email. Maybe those more tech savvy on here could tweet the people on the list and send a copy to the BTA and ATA and so on.

      Not tweeting/contacting all of the people on this list would be such a wasted opportunity. I would like to hear from the BTA to know how many they have contacted.

      UK and Irish

      Phillip Schofield (tv presenter)
      Susanna Reid (tv presenter)
      Seán William McLoughlin (better known as Jacksepticeye, YouTube star – raised millions for charity)
      Rodger Taylor (Queen)
      Ozzy Osbourne
      Pete Townshend
      Jamie Laing (UK reality TV star)
      Gerard Butler (actor)
      Martin Kemp (actor)
      Eric Clapton
      Phil Collins
      Chris Martin (Coldplay)
      Bilinda Butcher (band My Bloody Valentine)
      Jack Straw (politician, and Will Straw his son)
      Jo Whiley (radio presenter)
      Igor Bališ (footballer, left football club due to tinnitus)
      Joseph Mawle (Games of Thrones)
      Derek Mooney
      Andrew John Partridge (XTC)
      Peter David Robinson (UK politician)
      Francis Rossi (Status Quo)
      Kevin Patrick Shields (My Bloody Valentine)
      KT Tunstall (musician)

      US and other

      Whoopi Goldberg
      Trent Reznor
      Neil Young
      Will.I.Am
      Bob Dylan
      Steve Martin
      William Shatner
      Barbra Streisand
      Liza Minnelli
      "Joey" Jordison (Slipknot)
      Keanu Reeves
      David Letterman
      Suzanne Vega
      Dolly Buster
      will.i.am
      Neve Campbell
      John Densmore (The Doors)
      Al Di Meola
      Daniel Robert Elfman
      Paul Brandon Gilbert (Mr Big)
      Jeffery Michael Gordon (US Race driver)
      Ayumi Hamasaki (singer)
      Kirk Hammett
      James Hetfield
      Lars Ulrich
      Sam Harris
      Gary Edward "Garrison" Keillor (author/radio)
      Anthony Kiedis (Red Hot Chili Peppers)
      Huey lewis
      Rush Hudson Limbaugh
      Arjen Anthony Lucassen
      Steven Lee Lukather (Toto)
      Joshua Charles Malina
      Moby
      Neal Joseph Schon (Journey/Bad English)
      Thomas Gerard Tancredo (US politician)
      George Alexander Trebek (host Jeopardy)
      Ville Valo (HIM)
      Charles Joseph Scarborough (US politician / radio)
      Thomas Bangalter (Daft Punk)
       
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    6. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      I would but I have just hurt my teeth... long story. Can someone take over?
       
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    7. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      One good thing about the petition are the comments. These are not confined to a forum of sufferers - these are people “getting on” with their lives. Yet it clearly shows how tough this all is.

      Also habituation isn’t mentioned in the petition itself either, we’re making progress... print it, show your GP, ENT and tell them that the BTA knows how devastating this can be. They won’t be able to fob you off anymore and own up to the fact that there nothing they can do (should they be pushing for more help for their patients?)

      Having to fight to convince medical professionals, family etc. that tinnitus is challenging is a burden we could do without (I’m not saying you can’t get used to it or habituation can’t happen for some).

      At least we’re all on the same page now, tinnitus is bad, lack of research is bad.
      All we wanted was to be acknowledged and for our challenges not to be minimised simply because people with tinnitus make it through or because it has been the status quo for years. The times of suffering behind closed doors and being told it was only you are over as we have the Internet.
      Hopefully we can now keep the fight for research alive.

      Here's the article in The Times:
       

      Attached Files:

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    8. 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)
      Ok folks, we really want to give a big push to THIS PETITION asking the government more funding to tinnitus research, and we need ALL OF YOU to help out!

      We just published this video:



      Please, please, please share this as widely as you can.
      All your friends, family and followers need to know about this!

      share-on-facebook.png
      share-on-twitter.png

      All you have to do is share this Facebook post and/or this Tweet.

      The drawings were done by the wonderful @MrCrybaby (such talent!) and were animated - i.e. brought to life - by the amazing @Autumnly.
       
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    9. jimH
      Caffeine

      jimH Member Benefactor

      Tinnitus Since:
      30 years+
      Cause of Tinnitus:
      Acoustic trauma
      Awesome job by @Autumnly and @MrCrybaby! Thank you both for the time, talent and effort that you both put into this...! (y)

      An additional thanks to @Hazel & @Markku for their contribution and effort as well!
       
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    10. Chriscom

      Chriscom Member Podcast Patron Benefactor

      Location:
      Northern Virginia USA
      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Likely infection/ear stress after walking pneumonia
      Wow I'll say!

      I posted it on my Facebook feed, signed the petition, and will donate. And I'm in the US (as I know many others who have or will participate are).
       
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    11. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      That article is better than most, but I didn't like the last paragraph where it mentions 'specialist counselling' and CBT.

      It would have been better without that paragraph or at least a reworded version of it, i.e. 'Currently the NHS ONLY offers talking therapies to try to help battle the immense distress caused by tinnitus, although in many cases they have little or no success and tinnitus itself is left untreated'.

      Or something like that.

      I think a lot of GPs and ENTS probably don't see it as their problem, which of coure it isn't: it's ours.
       
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    12. Jcb
      No Mood

      Jcb Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
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    13. Jazzer

      Jazzer Member Benefactor Ambassador Hall of Fame Advocate

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Very well conceived and nicely put together.

      I have to say that, this being Tinnitus Week, I have bombarded my Facebook page excessively.
      But I will post this a little later in the year.

      If you run into overkill it sometimes works against you.
      People may well switch off.

      Well done guys,
      Dave x
      Jazzer
       
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    14. brokensoul

      brokensoul Member

      Location:
      Belgium
      Tinnitus Since:
      02/05/2019
      Cause of Tinnitus:
      unknown:medication,cannabis,stress,sleep deprivation
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    15. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
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    16. bobvann
      Cheeky

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Loud shit
      It's interesting that a lot of them are able to carry on playing music... If I try to drum, oh man!
       
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    17. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Signed the petition and was allowed to link to it in another tinnitus group with roughly 3000 members. :)
       
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    18. 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)
      citizen-science-tinnitus.png

      Hi all,

      We’ve been talking about getting more funding for research. But we’re also thinking ahead to how we – the tinnitus community – can influence how that funding is allocated. We want people with tinnitus to be directly involved in setting research priorities, designing studies and carrying them out.

      This is called Citizen Science, and Tinnitus Hub is actively advocating for it within the tinnitus research field. One of the researchers who stands with us on this is Deb Hall.

      READ HER ACCOUNT of why we need more Citizen Science in tinnitus research in our latest blog post, another Tinnitus Week special!

      In her blog post, Deb refers extensively to the COMiT'ID study, which we were a part of. The latest paper published as part of this project was co-authored by our very own amazing @Markku: https://www.i-jmr.org/2020/1/e14446/

      Cheers,
      Hazel
       
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    19. 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)
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    20. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      How long will the petition run for before the BTA (or whomever) approaches the government about funding?

      We have 11,000 plus now, but that is still a drop in the ocean really. Any less than 50,000 will be looked down upon, and really we need 100,000+. Wishful thinking maybe.
       
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    21. 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 reminds me how much work doing all these interviews was, hopefully you like them! Next up from our TRI 2019 video interview series:

      An interview with Inge Stegeman!
       
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    22. Claire1210

      Claire1210 Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
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    23. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
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    24. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
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    25. Claire1210

      Claire1210 Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      I've commented on their post on Twitter. I feel like this is a week where sufferers feel united and feel like there is some actual progress being made and then a silly post like that just puts a massive downer for those who really struggle and can't habituate.
       
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    26. bobvann
      Cheeky

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Loud shit
      • Like Like x 1
    27. 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)
      Hi everyone,

      So we come to the end of Tinnitus Week already. BTA's petition for more research funding was certainly at the core of things this week, and a worthwhile cause if you ask me. The counter is at 13,000+ signatures. To be honest, I don't know what will happen with the petition now, but I will try to get some info from BTA and keep you updated. Any further discussions on that topic should move to this thread.

      On behalf of Tinnitus Hub, I also want to say that we agree some of the awareness messages sent out by other organisations were counter-productive. There is nothing wrong in principle with publishing success story videos or pointing out that most people habituate. Those kinds of messages can be useful in a certain context, particularly when it comes to support for new sufferers who are anxious. BUT... at a time when we are trying to convince policymakers that more research and effective treatments are sorely needed, what we really need is to drive home the suffering of those who can't habituate. Which is what we tried to do with our video. In that sense, I am happy to see BTA apparently moving in this direction, and I think their political lobbying work is the way forward for all organisations who represent tinnitus sufferers.

      Personally, and to end on a positive note, we are quite proud of what we managed to pull off during this week. See post #1 of this thread; we managed to do most of those things! We want to particularly thank @MrCrybaby and @Autumnly for their contributions. A big thank you of course to @jimH for raising funds to get us TRI in Vancouver. And a special thank you to Deb Hall and @Will Sedley, two tinnitus researchers who reached out to us in order to engage directly with this community. You can read Deb's blog post here, and get involved with Will's work here.

      As just a couple of volunteers who care about people suffering with tinnitus and with almost no budget, we are proud of what we accomplished. And proud of this community pulling together like it has. And it's really just the beginning, because we have a lot planned for 2020 when it comes to involving this community in research and steering research in the right direction!

      All the best,
      Hazel & Markku
       
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    28. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Over the years it has become crystal clear that tinnitus organisations are not on the same page as sufferers and it’s not in their interest to find cure.

      My question is: why can’t Tinnitus Hub or Tinnitus Talk become our representative on whatever level is required to push other useless parasites out of the game?
       
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    29. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      I shared this video to the French tinnitus Facebook groups.
      They just accepted it.
       
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    30. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
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