"That Buzzing That Never Goes Away" — Article in The Times

Discussion in 'Awareness & Fundraising' started by Deamon22, Sep 28, 2018.

    1. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I’m so sorry to hear this, Val. Not only are you suffering with this condition but you have to put up with people’s lack of awareness and incompetence. It’s unacceptable.

      I’m glad to hear you’re going to write to the director about this.
       
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    2. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I love that video Steve!

      It’s creative, catchy, attention grabbing...

      Really clever!

      Maybe, in a similar manner, we can create one asking: which sound would you pick to hear for the rest of your life?

      And give an option of 4-5 horrible sounds!
       
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    3. Steve
      Creative

      Steve Director Staff Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Thank @Markku for his amazing production skills :)

      Actually I like that. Maybe a video in a sort of comic style or game show style.

      Do you pick box number 1 (broadband tinnitus), box number 2 (high pitched screaming tinnitus) etc...
       
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    4. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Markku is very smart and creative, told him that many times! I can only imagine that the sky would be the limit if he didn’t have so many health issues to deal with!

      Yes, something a bit funny but with a clear message!

      Just check this new ad (it's lot shorter on TV), I guess the same can be applied to silence!

      Your Eyes are Priceless | Specsavers
       
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    5. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @valeri Australian Commission on Safety and Quality in Health Care. NSQHS - Link at bottom

      In the US we have Joint Commission JCAHO who could come unannounced besides scheduled visits for accreditation.

      I actually loved those people even though I was on the other team. This and the good old fire department was one way to see change for at least for a day or two. OSHA would hand out fines if something wasn't corrected. They had the hospital rebuild a long hallway because the width was a half inch short of standard. I never seen anyone get so upset as an OSHA official who tested our fire alarms. He did some fast paperwork to have the volume lowered. The visit was made because of a complaint by a patient. We always had to have more gloves in the supply rooms and hand wash soap during accreditation time.

      https://www.safetyandquality.gov.au/our-work/assessment-to-the-nsqhs-standards/
       
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    6. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      Agree. I write a lot about this and what Valeri has experienced with use of parallels for tinnitus and physical associated problems that exist within healthcare in the USA. I post about this hoping that maybe a few visiting healthcare providers would take notice.

      To bring change to any establish financial part of society sometimes requires people to stop using their products or services, but that's not feasible when it comes to most commerce. With healthcare we are at their mercy. Financial insurance changes for fairness and hospital financial structure changes would mean giving up some of their profits. To treat tinnitus a medical team is often needed and that may include dentists, physical therapists, neurologists, pain doctors and several other specialties.

      I wish that it was possible to have tinnitus researchers and doctors that specialize in tinnitus come here. This would show if the tinnitus community really cares when there's no second flexible part time paycheck.
       
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    7. Autumnly
      Wishful

      Autumnly Member Benefactor

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Just logged in to post this on here (now back to trying to take a break from Tinnitus Talk :D). I just messaged them as well, going to be interesting to see if they will be willing to share my case or not... Hopefully, they will share severe stories as well.

      twitter-plugem-stories.png
       
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    8. JohnAdams
      Sunshine

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Even the title of this article is stupid. My tinnitus goes away sometimes. This whole subject is just dominated by a parade of ignoramuses.
       
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    9. Steve
      Creative

      Steve Director Staff Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      I think that they would but there are two barriers.
      1. They are very busy so have limited time to be able to participate fully
      2. Read this thread - nobody willingly walks headlong into a shitstorm. Attitudes would have to change to make it a possibility
      A huge barrier for many people. If there was a true full-body assessment then so many people would be able to access proper treatment. Sadly nobody really gets it, no matter which countries medical system you are in.
       
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    10. Steve
      Creative

      Steve Director Staff Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      I really wish we had that kind of production and resource. Sadly it's usually a room somewhere in my place :D

      I could imagine some kind of set up like that but where you play a tinnitus sound through something like a fake job interview. Deny you can hear a sound and watch the reactions of the people as they struggle to concentrate and answer questions.

      Although fake situations can be a bit mean, maybe not a job interview, something like market research where you often get taken off the street and into a room to answer questions.
       
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    11. Hazel
      Dreaming

      Hazel Manager Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      He is indeed! He also takes care of so much behind the scenes on a daily basis, which goes unnoticed but is crucial to keeping this site up and running. The video is awesome indeed @Markku!

      I like the idea of doing a something a bit lighthearted - although the key message would still be serious of course. I do believe it's much easier to reach a broad audience if we make it a bit entertaining, as any marketing/PR firm would tell you. A few people in this thread have rightly pointed out that very "heavy" videos are not likely to garner much attention - as much as we might all wish otherwise!
       
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    12. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      My own two penneth is that we really must give an insight into the full spectrum of suffering, because that is the truth of it, for god’sake.
      Okay - most people have it light, and cope without too much problem,
      Others develop more intrusive Tinnitus, which can still be managed by use of various techniques,
      And still others suffer very badly, affecting life changing decisions, re noise avoidance....etc....

      We really must not homogenise the very serious nature of this condition.
      It must not be an opportunity for light hearted entertainment, which disguises the shit
      (sorry @Hazel) ”poo-poo”
      that we all have to wade through.
      The nightmare is real!

      I guess we all see these opportunities differently.
      Perhaps we should all attempt to create our own awareness vehicles.
      I am tempted.
       
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    13. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Take care babe,
      I feel so much for you,
      relating your own pain to my own,
      Dave x
      Jazzer
       
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    14. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Advocate

      Location:
      United States
      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      I just see this backfiring on so many levels. Because what makes one person a sufferer and another not? We know it has nothing to with how “loud” it is. And if you think different, well I dare you to prove it beyond anecdotal experience. So naturally, this will just get flipped on its head and turn into a mental health conversation. And while I feel that is probably where this conversation “should” be headed, it would leave a nasty taste in many peoples mouths.

      I wish we understood why some people suffer more than others. I think if you look at Ts comorbid conditions you would learn a lot.
       
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    15. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      How about this Jazzer.....

      Fade in: Guy leaving a rock concert with his mates laughing.

      Guy: Great night!......My ears are ringing!

      Cut to his house. Black and white. He’s pacing up and down, he looks exhausted, his eyes sunken and his face ashen.

      He stares out of the window tears in his eyes. His crying wife is ushering the kids in to the car with their suitcases. She looks heartbroken as she looks back at him.

      Angle on: Him from behind at the window, shoulders slumped. He’s wearing a t-shirt with ‘Tinnitus’ written like a band name on the back with ‘ringing ears’ tour dates printed below.

      27/o7 Panic bowl
      03/08 Insomnia theatre
      03/09 Depression and anxiety arena
      5/10 Unemployment dome
      8/11 Nervous breakdown stadium
      06/10 Relationship loss field
      28/11 Alcohol addiction colosseum
      08/12 Homelessness sports field
      15/02 Suicide ballroom

      He turns and stares at the camera with dead eyes. We hear a piercing tinnitus sound....eeeeeeeeeeee

      Super: Make sure one night out doesn’t turn in to a death sentence.

      BOOM!......The BTA and NHS will f***ing hate it but hey ho.
       
      Last edited: Oct 7, 2018
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    16. Hazel
      Dreaming

      Hazel Manager Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      I think I may have created a misunderstanding here. I was not referring to Bam's video, which obviously should be based on his story told from his perspective, nor was I referring to your story.

      I was merely responding to Valeri's suggestion and speaking about awareness raising in general.

      These are not mutually exclusive ideas, are they? There's room for more than one awareness video. Having said that, I'm working on multiple tinnitus related projects at the moment, so I won't be doing this myself anytime soon. But the more the merrier.
       
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    17. JohnAdams
      Sunshine

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Are you saying we should give donkeys tinnitus to raise awareness? I'm down.
       
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    18. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      To me - this is nothing more than the truth of it.
      It’s not even exaggerated - simply the truth of what happened to both you and I.
       
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    19. attheedgeofscience
      No Mood

      attheedgeofscience Member Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      This would work. And it is essentially the concept that made up the "sounds of tinnitus" video (which had a re-share to ratings ratio greater than one – meaning: highly popular).

      Tinnitus Talk: Sounds of Tinnitus
       
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    20. attheedgeofscience
      No Mood

      attheedgeofscience Member Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      I guess the main summary of this thread – like many others – is a pitiful expression of excuses and laissez-faire attitude (when push-comes-to-shove) – with just a few exceptions. As a prescription to resolve the problem, I would propose that retaining a TT-account free-of-charge is only possible one month after sign-up. That should help collect "taxes" in a true Sherriff-of-Nottingham style for all the posters who frequent TT day and night, day-after-day, week-after-week, etc. Time to do some milking...
       
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    21. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      But sadly even people on here who know people who have killed themselves would say oh no no that’s too much.

      I personally think, and just my opinion, but the BTA strategy right now would be torn to shreds by business leaders and top CEO’s. These guys would be saying, ‘what?! You’ve got an awful bloody affliction here and you’re completely underselling it. Go for it! Tell the world how awful it is. Milk it!’

      Do you think the boss of Colgate sells toothpaste by focusing on the positive stories of tooth decay and telling people just to cope with their yellow teeth?

      Once the BTA grows a pair and focuses on the worst outcome of tinnitus, liberated and unshackled from their polite restraint, they can then really lobby hard on the massive social and NHS costs of tinnitus. Then and only then would they get some government funding and be able to run an ad with this kind of impact.

      Then trust me we would all wake up in a much more understanding world to what we are dealing with.

      This wishy washy approach they have serves no one.
       
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    22. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      Most donkeys probably already have tinnitus after years of lugging bricks whilst having their big ears smacked by some nasty c*** in a third world shit hole.
       
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    23. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Tinnitus as a desperate and chronic condition is simply not being addressed with any degree of honesty, but is continuously homogenised as a ‘copeable’ complaint....IMNSHO.
       
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    24. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Thank you Greg!
      I’m sceptical they will do much about tinnitus. When it comes to this damn condition it seems the response is the same everywhere we go.
       
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    25. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I agree!
      Unless they start saying it as is nothing will change.
      The bad and ugly needs to come out!
      Enough of their usual BS!
       
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    26. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      It is all about loudness! Whoever said differently didn’t experience both sides of the medal.

      Just ask people here who went from mild to horrific why they suffer now?
       
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    27. Steve
      Creative

      Steve Director Staff Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      I take it you are from the UK?

      You will be aware if so that government sponsored charity funding was pulled from many areas not so long ago. How would you go about getting government funding for tinnitus above the causes that they deemed were worthy before this?

      Are you aware of the work that the BTA have been doing? Because your criticism of them is actually wrong. They have published on the cost to the NHS and are working to make government aware of this so that we have tinnitus services in the UK.

      You see the hard approach as representative of tinnitus but I would argue that it's simply representative of your individual case. Putting across a point is one thing, but basing your entire strategy on it is another.

      I welcome all of the critics of the current organisations to do their own awareness. The internet allows you to have a voice and platform equal to others. I think that once you try you will realise that it really isn't quite that easy. Once you come face to face with the realities and you try to balance the potential harm against the benefits you'll find some difficult choices.

      Speaking as a person with severe tinnitus I do not want to be shouted at and told that it is torture and a virtual death sentence.
       
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    28. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Steve the way I see this can be put in two steps:

      1. Continue tiptoeing and balancing between harm and benefits and reap the “results” that we have had to this day! (read: an absolute zilch for tinnitus sufferers but not so bad for all the others involved).

      2. Change the rotten and outdated strategy and tell the world what it can be like! No one is immune to severe tinnitus, neither those who have never had it nor those with mild form!

      Do you think that a newly diagnosed MS or Parkinson’s patient doesn’t do research or isn’t aware of how bad things can get?

      How many cancer patients aren’t familiar what’s the end result if diagnosed with an aggressive form?

      Why aren’t tinnitus patients informed how bad things can get? Why do we continue sweeping the harsh reality under the carpet?!

      And if you tell me that severe cases represent only 1% then this unfortunate percentage needs a more serious representative than the BTA and ATA.

      BTA and ATA should clearly state they are not interested in the bad and ugly but only mild cases that can benefit from treatments endorsed on their websites and continue with what they have been doing for over 4 decades now!

      So it all comes down to what those representing us truly see as an important target!
      It’s either to help us or to continue supporting “milking” businesses involved!

      It’s that simple! It’s black and white with no need for 50 shades of grey in between!

      God do I wish I had more power :rockingbanana:
       
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    29. Autumnly
      Wishful

      Autumnly Member Benefactor

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Oh, come on. ‘Nothing’ is a tad too much. We clearly know that many people on here would give everything for some reduction.

      We have people on here who could cope well with tinnitus while it was mild and are struggling since it has worsened. People who freak out after a spike. How in the world is that just due to their mental health? The people who continue to struggle after years, at least how it seems to me, are people with loud intrusive tinnitus.

      Sure, you don’t care about anecdotal evidence but saying it has nothing to with loudness is just ignorant.
       
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    30. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      Then I’m afraid nothing will ever change and you will forever be a person with severe tinnitus.
       

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