More About the BTA and Tinnitus

Discussion in 'Awareness & Fundraising' started by david c, Aug 21, 2018.

    1. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Just saw this on twitter, a new video by the BTA. Do you guys think these statements are harmful? I'm not sure if leaving comments would even help or just be seen as nitpicking. I also understand where people are coming when they say complaining doesn't help but I'm wondering what sufferers are supposed to do. Is it okay to leave a comment disagreeing with them? Should we just ignore it and only show support when they do things we agree with?

      bta-1.png bta-2.png
       
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    2. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Autumnly

      I see your dilemma.

      Personally, I think that leaving comments may not be enough. It may be a mindset that has to be changed throughout BTA, starting with the Trustees.

      TC
       
    3. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Autumnly

      Have you read BTA's Tinnitus Manifesto, published during Tinnitus Week? It's available here. I just skimmed through and didn't see anything that resembled "most people don't mind having tinnitus."

      You've been a watchdog about this issue, more so than anyone - is BTA promoting two messages that contradict one another?

      Thanks, TC
       
    4. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      I often wonder how they could focus on the debilitating nature of tinnitus during Tinnitus Week 2020 but then post something like the videos mentioned above just a few weeks/months afterwards. Sometimes I wonder whether this has anything to do with the Cognitive Model of Tinnitus Distress. According to it, tinnitus can be debilitating for people who react negatively to it and fear it - so yes, tinnitus can be debilitating but there are actually "effective ways of managing it" (CBT, mindfulness). So it would be nice to have a cure and make things more convenient but actually, we already have treatments that are good enough for everyone with tinnitus - we could argue now what they meant by "managing" and "effectively managing tinnitus" but doesn't it create the image that everyone can learn to live well with it?

      Then again, maybe they genuinely don't see the harm in the way they word things but I don't get the message from them that they see tinnitus as a condition that can a) be debilitating in itself and b) that there are sufferers who can not be noticeably helped with the "treatments" currently available. However, they might be worried about increasing anxiety in new sufferers if they were to talk more openly about the suffering tinnitus can cause - but I don't think that preventing potential short-term induced anxiety in new sufferers should be seen as more important than sharing how debilitating tinnitus can be.

      Nonetheless, the BTA's Tinnitus Manifesto is very well done I command them immensely for all the work they put into Tinnitus Week 2020 and the Tinnitus Roundtable initiative. The way they word things, however, seems contradictory, for example saying everyone will notice tinnitus less over time is first of all not true and secondly plays right into the idea that tinnitus is only temporarily debilitating.
       
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    5. Adaś
      Tired

      Adaś Member Podcast Patron Benefactor

      Location:
      Switzerland
      Tinnitus Since:
      02/2013
      Cause of Tinnitus:
      Headphones, Stress, Rock concerts
      CBT and mindfulness is what we have got now and it is okay to promote it as long you don't pretend this is a cure and this does not hold you back from doing real research on the cure.

      What is not okay is making any suggestion that if you suffer from tinnitus you are kind of worse than others who can (easily) cope with this condition as "they don't mind having tinnitus". It is very harmful and stigmatizing - "Look they don't mind, but you are freaking out". This can just further amplify the anxiety.

      I believe BTA should immediately take down this message.

      @David are you reading this?
       
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    6. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Looking forward to more physicians learning that coping well with tinnitus is just a matter of having the right mindset!

      Screenshot 2020-05-05 at 13.46.39.png
       
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    7. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Noxious Car Radio
      It breaks my heart that the BTA spends so much resources pushing mindfulness when they could instead choose to lobby for meaningful prevention strategies like legal limits on recreational noise. If there’s nothing they can do, they may as well try to reduce the load of new patients.
       
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    8. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Screenshot 2020-06-10 at 18.45.47.png
       
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    9. UKBloke

      UKBloke Member Podcast Patron Benefactor

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
    10. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
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    11. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I hate how these people are saying mindfulness will help people with tinnitus. If you are a mild tinnitus sufferer maybe but severe tinnitus sufferer probably not.

      I guess they don’t understand that tinnitus could increase at any moment and assume everyone has the same tinnitus sound and level. That’s not the case.
       
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    12. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Sadly this isn't a surprise for those of us who have long seen the BTA push the view that anyone can habituate to tinnitus if you have the right personality traits and a large degree of "positivity".
       
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    13. BBakkers
      Not amused

      BBakkers Member Podcast Patron Benefactor

      Location:
      Netherlands
      Tinnitus Since:
      2011, Spike 2019, Spike 2020
      Cause of Tinnitus:
      1e Loud Music, 2e earwax irrigation, 3e padel tennis
      Exactly. That is only true for mild/low tinnitus.
       
    14. Jazzer

      Jazzer Member Benefactor Ambassador Hall of Fame Advocate

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      How dare “Tinnitus.Org.UK” claim
      “Together We Can Silence Tinnitus.”

      That is a blatant lie - and they know it.
      Nobody can silence tinnitus.
      Such insensitive claims disgust me.
       
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    15. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      Obviously it means that by working together, we can silence tinnitus (in the future).
       
    16. Jazzer

      Jazzer Member Benefactor Ambassador Hall of Fame Advocate

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Neither obvious nor a forgone conclusion.
       
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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
      Screenshot 2020-07-17 at 18.05.58.png
      About the study
      • duration of tinnitus isn't mentioned
      • type of tinnitus isn't mentioned (e.g. chronic or intermittent)
      • type of hyperacusis isn't specified
      • type of hearing loss isn't mentioned
      • didn't use THI or TFI but TQ
      • they don't explain what they mean by "psychoeducation concerning tinnitus and hyperacusis"
      Papers about CBT/mindfulness so far (a list with all papers can be found here):
      I wish these journal club sessions could be watched by anyone. Maybe the BTA has nuanced discussions regarding the use of CBT and mindfulness for tinnitus but since we don't know how they discuss these papers we're left to wonder if they're including the perspective of severe sufferers.
       
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    18. ActorFred

      ActorFred Member

      Tinnitus Since:
      10/2019
      Cause of Tinnitus:
      Noise Damage
      Is there any information about the BTA research webinar they recently hosted?

      I know Tinnitus Hub asked them various questions on what the BTA thinks about Frequency Therapeutics and the Dr. Tzounopoulos drug.
       
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    19. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Did anything come out of the BTA activities during Tinnitus Week, specifically the petition and roundtable discussion?

      Thanks, TC
       
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    20. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      Email david@tinnitus.org.uk and ask. Share the response here.
       
    21. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I would be well surprised if any funding goes to tinnitus now what with COVID-19, but stranger things have happened.
       
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    22. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Time after time supporters of the BTA have promised a "new start" where the BTA will start supporting curative research rather than the "management strategies" research which benefit their corporate members. Yet time after time these promises come to nothing. As I understand it the BTA was promising to announce some new research projects in May, yet we've yet to hear anything. I for one am certainly not holding my breath...
       
    23. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @ajc, @all to gain, @david c, thank you for the come back.

      @ajc, if I were to email David Stockdale, assuming I knew his address, he wouldn't tell me anything more than what is available to the public. So if you all have not heard anything, then there is nothing to be heard.

      Take care, TC
       
    24. BrStan@

      BrStan@ Member Benefactor

      Location:
      London
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Acoustic trauma
      BTA are useless, period. I personally called them so I know from experience. The answer was "it will get better, goodbye".
       
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    25. Watasha
      No Mood

      Watasha Member Benefactor Advocate

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      What's amazing is that ATA funds curative research but with only a tiny fraction of revenues and is otherwise terribly run.
       
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    26. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Is anyone taking part in any of these online support sessions by the BTA?

      An introduction to the solution-focused approach - free of charge, 9th Oct
      This session is all about the solution-focused approach to tinnitus, an effective and increasingly recognised therapy in psychological circles, which leads to people living well even in the absence of a medical cure.

      Living well is achieved by learning not to struggle but instead by a clear focus on:
      • 1. What matters to you and how to get there, so the problems are no longer inadvertently made worse by struggle.
      • 2. Respecting and building upon the expertise you already have.
      Online Tinnitus Workshop - £5.00
      An online tinnitus workshop offering people with tinnitus the opportunity to learn more about it and how to live with it better.
      • Understand what tinnitus is and how it relates to hearing problems
      • Be able to separate tinnitus fact from tinnitus fiction
      • Understand how tinnitus can become a big problem
      • Learn about a number of evidence-based techniques for managing tinnitus better and making it less of a problem in your life
      • Share experiences with other people who have tinnitus
      • Know where to go if you need further help
      Myth Busting Tinnitus - free of charge, 5th Oct
      A 30-minute webinar exploring the common myths and misconceptions of tinnitus with the aim to give you a better understanding of the facts, including a live Q & A.

      I wonder if "Understand how tinnitus can become a big problem" is based on the cognitive model of tinnitus distress...

      Online Journal Club
      (for audiologists and hearing care professionals)
       
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    27. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I find the articles depressing and cause more hopelessness and distress. I rather read studies that offer solutions for severity such as how to control hypertension and its effects and how cholesterol and plaque can cause hearing loss. As least there's statins, foods and magnesium that help with this.

      Some associations, universities and corporates are just too involved in fee paid associations and services.
       
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    28. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I didn't know cholesterol and plaque can cause hearing loss. How does Magnesium help? How much and what type should be taken?
       
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