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

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

    1. david c

      david c Member

      Tinnitus Since:
      01/2012
      It's not a big conspiracy theory to claim that the BTA is run by and for "corporate tinnitus" - the significant number of professionals who make their living from tinnitus. - it's just to point out facts. It clearly explains why they would want their research funds to go to "management strategies" research which will benefit their corporate members. They may be "lobbying" for funds for other types of research but downplaying the nature of tinnitus won't help towards fundraising - especially in a crowded marketplace for medical charities in the UK.
       
    2. Holly1987

      Holly1987 Member Benefactor

      Tinnitus Since:
      09/09/2017
      Cause of Tinnitus:
      Unknown p
      Totally agree, I don't comment on here much anymore but I do want to say @Ed209 helped me immensely on a particularly difficult night I was having around 6 months ago. He took the time to write a detailed response which I screenshot and refer back to when I'm struggling. Ed is the real deal, haters can suck it.
       
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    3. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Yet another post happily ignoring all of the responses to you on this forum. Your narrative remains unchanged...
       
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    4. david c

      david c Member

      Tinnitus Since:
      01/2012
      The BTA has a large number of corporate members:

      https://www.tinnitus.org.uk/Pages/Category/corporate-members

      These are business's not charities - of course they want to see a return on the money they are putting in to the BTA - part of that return is the BTA sponsoring the management strategies research which helps their businesses. None of this is a conspiracy theory it's just the way capitalism works.
       
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    5. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      @Bam I met the gentleman in question at a BTA awareness day in London a short while before the interview was aired.

      He was struggling indeed like a lot of us there.
       
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    6. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      Well he did himself a great disservice then because all he did was sit there behaving nicely and saying nothing untoward...... a perfect little patsy for the coping industry.

      You stick me on TV and trust me all of you are going to get a whole lot more bang for your buck.
       
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    7. Sam Bridge

      Sam Bridge Member Benefactor

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Loud music/gigs probably
      Why don't you make a YouTube video?!
       
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    8. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      https://www.michaeljfox.org/
      Purpose. Partnership. Progress.
      Our single urgent goal: Cure Parkinson's disease. We can't do it without you.
      • Note the single minded proposition, sense of urgency, inclusiveness, positive reinforcement.
      • Can't say I've seen a lot of hysterical people with Parkinson's Disease around either, probably because they take comfort knowing that such an organization exists and is working on their behalf. I would want to donate to this organization.
      • This is not about neural plasticity, this is about Leadership Behavior.
       
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    9. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Bam,
      I have known @David a long time with my past being with the BTA and support group.

      It was lovely to meet and talk with David in person at the Talking Tinnitus Expo in Birmingham.
      He does so much with the BTA and runs his heart out with others raising money for the BTA.

      He's a lovely man and so are the rest of the BTA staff.

      Tinnitus Awareness is so much needed and I do understand what you're going through and want to shout it from the rooftops!

      That said, we can't frighten the hell out of people but I do understand the severe side of tinnitus also needs awareness but a few minutes on live TV is not the place to get every point across.

      I struggle at times just to breathe and I rely on lots of medications to keep me alive and at the same time struggle with severe Bilateral Tinnitus, I'm fighting daily to enjoy life, wondering at times why?

      We can only do so much but together we can all make difference.

      love glynis
       
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    10. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      This discussion has gone off on a different tangent. I originally posted the video to show that the BTA are actively raising awareness amongst medical professionals, as that is what we were talking about at the time.

      I understand the catch 22 nature of the current debate. However, people need to realise that going on TV and saying you’re suicidal is not going to achieve as much as you think. Let’s put it another way: what do you think would happen next? Or, what would it accomplish?

      There are various newspaper articles about tinnitus suicides and some are very graphic. The tragic stories of James Ivor Jones, Daniel Derricott, Craig Gill, etc were all in the national press. I have spoken quite frankly with many people about this condition both normal and medical, and it’s quite apparent to me that they know people commit suicide because of it. It’s often one of the first things that’s brough up. A good friend of mine who is also a dentist once told me ‘that condition is torture, I know people have killed themselves because of it’. To be honest that was the last thing I wanted to hear at the time, but that’s what he said. I’ve spoken to a few GPs about it and they were very candid with me. One said there’s a guy at her practice who has hyperacusis and is suicidal about it, but there’s nothing she can do about it and it really upsets her.

      We know it can take people to the depths of hell, but what can we do about it? Shock tactics don’t work. They work about as well as the graphic pictures you get on cigarette packets (in the UK): in other words, no one’s bothered. You might get a small spike of interest, at best, but that’s it. Long term, the more you push the horror stories, the more you affect the emotionally unstable tinnitus sufferers which make up the majority, and that’s unfair to them. That’s not to say we are ignoring the worst sufferers by doing this. If we want to help ourselves, objectively, then we need to raise money for biomedical research. The fact that James’s story - which was one of the most graphic - only raised £5621, when it was published nationwide, is very telling. Nothing will budge the tinnitus community to give to their own cause. Wishful thinking achieves fuck all. It’s time some of you got your heads out of the clouds and came back to reality if I’m being honest. The apathy pisses me off sometimes; especially when we can at least try and help the worst affected. I can’t see how this will change because the community would rather use the BTA as a scapegoat and blame them rather than look inward to see what they can do to help.
       
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    11. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Why don't you start promoting awareness of stuff like this that may actually cure tinnitus?

      https://newatlas.com/hearing-loss-treatment/54076/

      Can you give me an answer please?

      You're supposed to be our advocates and this is what many of us want you to do. I agree with @Bam, when the interviewer asked you about a cure you should have mentioned that there are emerging technologies that may cure certain subtypes of tinnitus.
       
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    12. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      “Oh - just tune it out eh?
      Well what a great idea!
      Wish I’d thought of that!
      You should dash of your
      copyright application to
      protect your intellectual
      property! Amazing.
      Now if you get any further
      ideas, on a par with this one,
      please do me a personal
      favour, and lodge them right
      up your back passage!”

      Regards
      Jazzer
       
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    13. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      No doubt they are lovely and they can continue to be lovely.

      The tinnitus community has come together and is asking that when given the opportunity, they include and emphasize that many with it are struggling, some have lived with it for extended periods of time, but all would like it to be gone. A cure is needed. Those with tinnitus would welcome researchers efforts dedicated to this effort.

      They can continue to be lovely - assertive but not aggressive. No need to vomit on or kick the chair out from underneath the TV host, for now anyway (lol).
       
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    14. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Jazzer, You have the knack for telling it like it is. Don't ever change.

      OMG- I can't stop laughing. Thank you.

      TC
       
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    15. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      It would be lovely to have longer air time on Tinnitus and Hyperacusis covering every aspect and severity...

      Talk Show?
      #TinnitusWeek 2019
       
    16. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Thank you Tuxedo,
      I love a good audience,
      With people like you around
      a change is quite unlikely,

      love

      Dave x
      Jazzer
       
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    17. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      We have looked at them before, they really are a gold standard in terms of what they do and how they do it. They also have an awful lot of money and some powerful lobbying.

      What you see for conditions that are degenerative and those that are a death sentence, is never a dwelling on the picture of the near-death individual. You see the dignity of the individual, the fight to do something to help raise funds to beat the condition that is killing them.

      This is the way that all of the charities have found works the best. Not sure how old you are but I was a kid when the adverts were around for AIDS. These were seriously hard hitting. The AIDS TV advert (with John Hurt's voice) scared the living crap out of every school kid. We all thought we were going to die from it, there was genuine fear.

      Imagine that level of hysteria in kids caused by an organisation posting awareness about tinnitus in the same manner.
       
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    18. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Ed209 You have mentioned several times that healthcare professionals that you talked with (I presume in England) are compassionate and understanding towards those with tinnitus. That's not always the case in the USA. Many are not giving proper tinnitus health care within the USA.

      No one in this discussion has separated tinnitus from hearing loss and tinnitus that relates to other conditions. In the USA doctors (teams) often won't take the time to explore physical conditions that may be causing a person's tinnitus. Our insurance systems including national government plans are different from yours. The rich and powerful get special treatment and treatments. Many in the USA can't afford hearing aides, mouth guards, proper dental care, physical therapy and nursing home care which is expensive. Your country may not have a great hearing / tinnitus care and financial support system, but it's better than what we have in the USA.

      The USA has research and development on many medical conditions that also can tinnitus, but they are not always applied in tinnitus care medical practice. Many establishments in the USA would back promising tinnitus treatments. We need awareness for aggressive healthcare tinnitus treatments for physical conditions, while we wait for stem cell and hearing cell treatments. You should try to get consideration for a BOD position with the BTA as that would fuse several associations even tighter which would be a positive.
       
      Last edited: Oct 6, 2018
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    19. Sam Bridge

      Sam Bridge Member Benefactor

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Loud music/gigs probably
      I recall you said you had mild tinnitus for a long time before it became severe. Did you back then know that it can become worse like it is now?
       
      Last edited by a moderator: Dec 3, 2018
    20. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      We all know what we want to get over to the public about tinnitus and its various levels of severity and hyperacusis through raising more awareness, but how would you go on about it and would you volunteer your time towards it?
       
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    21. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      That's a great idea!
      @Bam - you have a chance to craft your message perfectly (no improvisation required like at TV interview), and in this day and age of social media, you could be reaching more people than national TV!

      Will you do it? We're rooting for you!
       
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    22. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      For me the take home of this particular thread is that we all agree that there needs to be more awareness and that tinnitus needs to be shown as what it can be to some people.

      We disagree on the methods and on how we should portray the condition.

      Healthcare systems and cultures are also very different across borders so we can think quite differently. A client I was talking to recently, who is British with Pakistani heritage, said that when he asks relatives over there how they are, they proceed to go into depth about all of their problems. He said "we're British, we're just being polite when we ask that, we don't really want to know". Two cultures who approach discussing health issues in very different ways.

      I would like for all of this energy to go into helping out and planning awareness efforts.

      Of course I will not be in the least bit surprised if it's all tumbleweed when it comes down to it, because that's the experience we have. Lots of noise, little effort. I have learned by experience to expect nothing so I'm not disappointed when it's realised.

      I completely agree. @Bam it's time to do yourself what you want to be done. Think about the impact and what you want to say, think about the kids with tinnitus that will see it and the people who are on the knife edge.

      Hard hitting should balance those things and not cause harm.
       
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    23. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      But like all other tinnitus sufferers sounding off on YouTube I’ll be another nutter preaching to the converted and not the masses who would never watch it. Why would they?!? The thing about the BBC interview was the guy had a legit platform of a few million.
       
    24. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I agree, and if we all back his message we can get good exposure. All it would take is for members to like and share it.
       
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    25. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Sorry if you take this the wrong way, but I think you're making excuses for not doing it.
      If you really believe you can send a better message, then take your chances and do it.
       
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    26. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      With all due respect, Bam, it seems you want all these things to be done, but have an excuse when an opportunity presents itself. You have defaulted to wishful thinking again where it’s somebody else’s problem to solve.

      You can’t really attack others if you aren’t prepared to get in the pit yourself.
       
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    27. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Well, why not attempt if the tinnitus community can come together?

      If you were to proceed with the suggestion and put some effort into creating a video about your tragic story (which seems to be on the very severe side of tinnitus), I promise that we do the following:

      And along each of the above step, I'd make sure we encourage everyone to share the video on their social media accounts - that no doubt reaches a number of healthy individuals as well.

      Can it hurt? We really shouldn't be thinking in terms of "all or nothing" - "BBC prime time" or "let's not even try" - there's a middle ground here, and it starts by the community members being active and trying to do what they can to spread the message.

      The more traction tinnitus gets on the internet, the better.

      I'm rooting for you, and I'm rooting for this community.
       
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    28. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I think it’s safe to say we all agree that we need to be looking towards curative measures. The difference in opinion is mainly in approach. I’m just trying to be pragmatic and realistic.

      Yelling that you’re suffering all day, on here, won’t change a thing, unfortunately. All we can offer here is the message of hope that it does get better for most people. But, nobody wants to hear that anymore, and at the same time, nobody wants to do anything that objectively helps the sufferers who can’t cope.
       
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    29. 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)
      I could not agree more. If you're not happy with current awareness raising efforts, then start your own! We have a huge platform of people here; start up a working group of Tinnitus Talk members who collaborate on different awareness campaigns.

      But as you point out, Steve, usually people don't back up their opinion-making with any actual effort, so let's see :)

      Wow, that seems a bit too easy, after all the criticism you just voiced at others for doing the "wrong" awareness raising, you don't even want to give it a try yourself. Of course it's hard! Pulling off an effective awareness campaign is damn hard; it takes hundreds of hours of effort and a diverse skill set. That's why some of us here get so pissed off with people who just complain but fail to contribute meaningfully. I'm not saying you're one of those, but your post sure points in that direction. Come on, jump on board and actually invest some time and energy in a new initiative, there's so much to do!

      Yes! You're a shining example for the whole community, Markku. Dedicating countless unpaid hours to the cause every single day. If only a fraction of members would take your cue and start contributing some of their own time (beyond just voicing opinions on the forum), what could we not achieve together?!?
       
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    30. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Well then don't post awareness about tinnitus in the same manner! From what you describe I doubt an ad agency would put together a campaign of the same type today. A lot is known about what age groups are watching TV at certain times of the day and certain TV shows. There can be different versions of a advert targeted to different age groups. Reaching children on the internet has probably advanced as well.

      I never worked on the marketing side of business but the company I worked for was very good about educating us in R&D about marketing efforts. Marketers and ad agencies have the history and are quite tuned into what works. There can be some trial and error, I recall being shown ads about drunk driving in Australia. They were very hard hitting. Why? Because past, more low keyed efforts failed because no one believed it could happen to them. When the blood and gore and guilt and shame and punishment were freely advertised, the drunk driving rate fell.

      I am an American and was in my early 30's when the AIDS crisis hit.
      The WHO was brought into action.
      It had a huge impact on my profession. OSHA standards were improved there was better enforcement.
      It brought about a huge change in the FDA drug approval process. The fast track was initiated.
      It brought about a huge change in the way medical profession treated disease- they came together took the available drugs and began to treat with drug cocktails rather than monotherapy.
      Education about high risk behaviors was promoted.
      Condoms were made more available.
      Disposable needles were made available.
      Medical waste disposal was tightened up.
      Better procedures for testing and storing the blood supply were identified and instituted.


      I'm sorry you were traumatized by the AIDS ads.
      TC
       

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