BTA Are Launching a Funding Drive Towards a Cure

Discussion in 'Awareness & Fundraising' started by Ed209, Aug 6, 2019.

    1. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I think this shows the silly mentality of the BTA.

      On their website they have an unreadable blurry image of their roadmap.

      They tweeted about it and I said it was too blurry. All they have to do is swap the image for a clearer one, that the public can see on their website, which would take less than 5 minutes, and they're just...... I can't even.

      upload_2019-9-4_15-56-33.png

      It's like, why do I need to e-mail them for a copy? That's just ridiculous.

      :dohanimation:
       
    2. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Seriously, the BTA isn't even taking this seriously. Not only can they not help with tinnitus in any way, they refuse to even adequately describe their pathway to finding a cure. They are insulting our intelligence with that low resolution road map that is illegible. Why should we have to e-mail them for specific information regarding that? What the fuck is even the point of showing a illegible version of the road map?

      They are just jacking us off. "give us money to find a cure". They don't even have a clear pathway forward.

      David Stockdale, shame on you dude.

      @Hazel what do you think about this? The reason I ask is because you're both trainers with the ESIT.
       
    3. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

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      high frequency hearing loss
      @JohnAdams

      Yeah they don't make it easy. I think you have to poke around BTA's Facebook page and their website to try and figure out what they are doing.

      It almost looks like they are only using the roadmap as wallpaper. The bigger emphasis is on the recent paper "Why there is no cure for tinnitus". You can comment on David's Blog here: https://www.tinnitus.org.uk/blog/mapping-where-we-are

      BTA also want to do this -
      • Continue our work with researchers across the world to map out current tinnitus research
      • Develop the concept of a Tinnitus Biobank (a database of health information) for a long-term study into genetic and environmental factors associated with tinnitus
      • Develop further research using biobank data to analyse correlations between these factors

      So they will be setting up a Large Grant (probably for the Biobank, if I'm reading correctly) and have put out calls for several short term studies in areas reviewed in the paper.
       
    4. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

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      Noise-induced
    5. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I have a strong feeling that when a cure is found that the BTA will have had nothing to do with it.
       
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    6. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
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      2017
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      Fair play, but man we are Americans and the ATA won’t even respond to my letters.

      We are richer than the UK, have greater resources and the ATA basically prints a brochure maybe 3 times a year as far as I can tell.

      At least the BTA are active and you can communicate with them.

      Try getting in contact with a human at the ATA. Let me know if you can, I have been trying for eight months now.
       
    7. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
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      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      drinking-bird-watch-it-go-14.gif
       
    8. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

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      Original tweet

      If you leave a question, please do so in a respectful and thoughtful manner.

      Bildschirmfoto 2020-01-08 um 15.45.36.png
       
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    9. Watasha
      No Mood

      Watasha Member Benefactor Advocate

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      Thanks for sharing this! I saw this this morning but wasn't sure the best way to share or if it needed its own thread or whatnot.
       
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    10. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

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    11. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

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      Brighton, UK
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      April /1996
      Cause of Tinnitus:
      Noise induced
      Once I wouldn't believe such a comment but now I do.
       
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    12. david c

      david c Member

      Tinnitus Since:
      01/2012
      One question I think they should be asked: Recently the BTA did a survey for responses to the NICE guideline on tinnitus in the UK (only after a lot of pressure on them to do this from myself and others I should add) .

      I took part in the survey and one of the final questions asked people to choose from a selected list provided by the BTA on which research areas they thought were most important for tinnitus research.

      Developing new drugs or medications for tinnitus was not one of the options on the list provided by the BTA - despite the fact that most tinnitus sufferers would highlight it as important.

      I would ask them whether the decision to exclude drug/medication research from their list was deliberate or whether they just "forgot" about it?
       
      • Good Question Good Question x 1
    13. Watasha
      No Mood

      Watasha Member Benefactor Advocate

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      Why do you feel this way?

      I most certainly feel this way about the ATA who does not deserve a penny until they reform themselves and their expenses.
       
    14. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      The following comments are just my opinion.

      When I first got tinnitus 24 years ago I believe the BTA was better than it is now. I subscribed to their journal, QUIET, that came out every quarter and looked forward to reading it. I liked the way the journal was edited and got the distinct impression the editor really understood tinnitus and probably lived with it. It had a fabulous letter pages. This was where readers with tinnitus could write in giving advice to other readers, on treatments etc they found helped them to cope better with this condition. This was long before the BTA was launched on the Internet which began in 2011.

      The BTA have organised many tinnitus seminars and conventions over the years which have been hosted by renowned ENT doctors and other medical professionals in ENT and Audiology, so members of the public could attend, and listen to the latest research and treatments for tinnitus. I never attended any of these seminars as they were mainly held in the North of England and I lived in London which is in the south.

      My opinion of the BTA began to change when I bought a 2 DVD videos covering a two day tinnitus seminar which I still have. All it involved was ENT doctors and other medical professionals, patting each other on the back and giving a high-five, as they presided over their seated audience (members of the public) and announcing their medical qualifications and PhDs at every opportunity as if they are all knowing about tinnitus. Nothing more could be further from the truth!

      It was then, I began to realise what I now know and confirmed to me by my own ENT consultant who has a PhD, that these doctors are physicians, not tinnitus specialists. They treat underlying medical conditions within the auditory system that is causing the tinnitus. However, most ENT doctors know very little about tinnitus as they are never experienced it.

      As time passed I began to get more involved with the BTA and learned, most of the people that work there do not have tinnitus and therefore cannot really understand how it can affect a person. I could say a lot more but will restrain myself.

      Michael
       
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    15. david c

      david c Member

      Tinnitus Since:
      01/2012
      Agree with you on this Michael. The BTA is very much run by and for the benefit of tinnitus professionals (i.e. those who earn a living from tinnitus) rather than tinnitus patients. Most of their staff don't have tinnitus themselves and have little or no understanding of how tinnitus affects sufferers.
       
    16. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      I also agree with you David and I wish it were not this way. It was through the BTA that I first began counselling people with tinnitus. People would contact them for help and they were referred to me. I soon learned the majority of the staff at the BTA including the Editor have no experience of tinnitus. It is for this reason I flatly disagree with them selling headphones on their website and is a clear indication, that these people in my opinion, know absolutely nothing about the dangers of headphones for people with noise induced tinnitus. This also includes the health professionals and ENT doctors they have in such high regard.

      The health professionals and ENT doctors that advise organisations such as the BTA I respect them for their medical skills and everything to do with understanding the anatomy of the ear and underlying medical conditions associated with it. However, tinnitus is a different kettle of fish. Most of these people have never experienced tinnitus and if they have, it is likely to be mild and nothing like the majority of people that attend Tinnitus Talk regularly. In short, what I'm saying, these people are medics but not tinnitus specialists.

      It is only the Hearing Therapists and Audiologists that specialise in tinnitus and hyperacusis treatment that really understand tinnitus, and you will find most of them have tinnitus. They were either born with it or acquired it at some time in their life.

      Michael
       
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    17. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

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      I once rang their helpline and asked the lady on the phone if she had tinnitus. She answered, "I do have occasional tinnitus if that makes a difference to you." I immediately thought that she is lying. Of course, I have no idea if she does or doesn't have tinnitus, but it was the tone she put it across with that gave me doubts.

      I wonder how many of today's staff at the BTA have tinnitus and out of them severe tinnitus?
       
      • Good Question Good Question x 1
    18. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      How can you expect a charity staff to have severe tinnitus? Severe tinnitus means you cannot hold a job.
       
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    19. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

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      You are right, and I did think of this myself. But at the very least they should have regular input from those with severe tinnitus.
       
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    20. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      The answer to your question I believe will be zero. The people that work at the BTA are doing a job for which they get paid. There is nothing wrong with this but most of them haven't got tinnitus or even experienced it. For this reason it was people like myself, that put ourselves forward to be tinnitus support contacts and the BTA referred people to us that contacted them for help and advice about tinnitus.

      Michael
       
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    21. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      Unfortunately, the only way you can truly understand tinnitus is to live with it. It is for this reason ENT doctors treat underlying medical conditions within the auditory system that is causing the tinnitus. The actual tinnitus they don't know much about as most of them do not have it.

      Michael
       
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    22. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      What input do they need? The path forward is clear.
       
    23. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

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      I suppose it will be the same for most charities/organisations that deal with illnesses etc. Unfortunately, with tinnitus being a hidden disability, most people will not be able to fathom that something so hideous can truly exist. Only once you have walked in the shoes of another person can a person truly understand what this is like.
       
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    24. all to gain
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      all to gain Member Podcast Patron Benefactor

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      I agree, but I don't know enough about the organisation to make a true judgment about their work.

      But it is obvious that we have enough coping strategies in place.
       
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    25. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

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    26. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

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      Many thanks for posting this. Done.
      Weird thing they did not ask for gender, age, location, cause of tinnitus, email address...
       
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    27. all to gain
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      all to gain Member Podcast Patron Benefactor

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    28. Watasha
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      Watasha Member Benefactor Advocate

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      You could always tweet/e-mail them how it's affected you.
       
    29. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

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      03/2016
      Cause of Tinnitus:
      Otosclerosis
      They did. It's the second to last checkbox in question #7.
       
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    30. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

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      Shows the lack of concentration I have at the moment.
       
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