What Bothers Me the Most...

Discussion in 'Support' started by Vaba, Apr 20, 2016.

tinnitus forum
    1. Vaba
      Shitfaced

      Vaba Member

      Location:
      New New York
      Tinnitus Since:
      Unknown
      Cause of Tinnitus:
      Unknown. Gradual, Progressive
      ...is knowing just how little research attention hearing loss and other audiological issues are given.

      Despite the many, MANY millions of people that suffer from things like hearing loss, tinnitus, and meniere's it often feels like big pharma, investors, and medical researchers just toss hearing to the side, even though there is great benefit to be had, and massive profit to be made. Seems like all of the clinical trials that show any promise at all are being run by third-party establishments. Why is there so little pressure to develop real treatments for these abundantly common and often life-ruining conditions? Why does it seem like the world has accepted hearing aids as the "gold-standard," "it's the best it's gonna get" treatment for hearing loss? Have people just grown to accept hearing loss and its consequences as a part of life and the aging process? Why?
       
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    2. Aussie Lea
      Dramaqueen

      Aussie Lea Member

      Location:
      Melbourne Yarra Valley
      Tinnitus Since:
      01/09/2013
      Very little is understood about tinnitus, there is no profit motive to blindly jump into funding research.

      First researchers need to make a medical breakthrough in understanding of tinnitus and then there will be more pharmaceutical companies trying to come up with a treatment.

      The cost of tinnitus related expenses to the society is astronomical yet the Australian government isn't funding tinnitus research. Same it is for US government.

      What YOU CAN DO is study to become a researcher and spend your life learning this and figuring possible treatments! You CAN ALSO donate money to research and other tinnitus causes!
       
    3. Jamie
      Scared

      Jamie Member Benefactor

      Location:
      Dunedin, New Zealand
      Tinnitus Since:
      05/1989
      Cause of Tinnitus:
      1989 Ear Infection 2015 Coming off Benzo
      Good point Vaba,

      I too have often wondered why there is not more effort put in. If you do the numbers, If 1% of people have debilitating tinnitus and there are 7 billion on the planet that's 70 million people whose lives are ruined buy this condition. 3.2 million in the US alone.

      I think it's mainly because it is a condition that can't be seen, from the outside you look perfectly normal so people have real difficulty in understanding how awful it is. It's like the doctor telling you to go home and live with it, he/she wouldn't say that to a multiple amputee but I would rather lose a couple of limbs than have this crap.

      Not only would the amputee get huge empathy from everyone, they would have lots of money thrown at them to make there life more bearable, and then when they did run the marathon, go water-skiing or climb a mountain they are an absolute legend, a folk hero and people would say "Wow they are amazing, they don't have legs and look what they can do".

      I don't mean to pick on amputees but it's just the difference between a condition you can see and one you can't, people with mental illness or phamtom pain are in the same boat as us.
       
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    4. NineNails

      NineNails Member

      Curing hearing loss makes no sense whatsoever for hearing aids and cochlea implants are big money machines. T is just the side effect of hearing loss and it's invisible.
      So why fix something that accumulates money for a lifetime whereas a cure is just a one time paycheck?
       
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    5. Bertman
      No Mood

      Bertman Member Benefactor

      Location:
      canada
      Tinnitus Since:
      07/2015
      Cause of Tinnitus:
      concert
      I 100% do not agree. Sure, hearing aid manufactures may not be funding research for tinnitus and a cure for hearing loss, and that's understandable because they are in the business of making money through their devices, but to say that they somehow have control over research being done is just wrong.
       
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    6. NineNails

      NineNails Member

      @Bertman ,

      where there is money there is a way.
       
    7. Michael2013
      Happy

      Michael2013 Member

      Tinnitus Since:
      September 2013
      For starters, how about because 75% of people with hearing loss don't wear hearing aids at all? They simply go without anything. There is an huge untapped market out there for someone to make money if they came up with a cure. Far more than any of the hearing aid manufacturers today.

      -Mike
       
    8. NineNails

      NineNails Member

      So cured patients keep paying bills? Really?
       
    9. bill 112
      Studious

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      If said pay check was $150,000 I'm pretty sure nearly everyone here would rob a bank,I'd nosedive through Bill Gates skylight with a machete if I had to!;)
       
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    10. Bertman
      No Mood

      Bertman Member Benefactor

      Location:
      canada
      Tinnitus Since:
      07/2015
      Cause of Tinnitus:
      concert
      Please explain to me how hearing aid companies could corrupt the research being done into hearing problems. Pharma companies and researchers have every incentive to find a cure.
       
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    11. Michael2013
      Happy

      Michael2013 Member

      Tinnitus Since:
      September 2013
      You could ask that question about any kind of disease where there is medicine available. This whole suppressing of the cure conspiracy is also said of things like cancer, too.

      cancer.jpg

      Besides that a different argument from what you said earlier. You said there is no reason to cure hearing loss because people use hearing aids. I'm pointing out that only a very small percentage of people with hearing loss actually use hearing aids, so that's not really a valid reason.

      -Mike
       
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    12. Aussie Lea
      Dramaqueen

      Aussie Lea Member

      Location:
      Melbourne Yarra Valley
      Tinnitus Since:
      01/09/2013
      Ladies and gentlemen, we have yet another conspiracy theorist with us! Welcome @NineNails
       
    13. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      Just go back to sleep, all is well, question nothing. And if others have different ideas than you, keep labeling them.
       
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    14. zombiechick
      Probing

      zombiechick Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Medication and hearing loss
      It's not really a conspiracy. Think about the amount of money being made in sleeping pills, anti anxiety medication, antidepressants. It's insane. "We don't have a cure but take these pills for your bad feelings toward it." Or I can't sleep "take these addictive sleeping aids with those crazy pills." I also wonder at the amount of money they make off folks who spend boat loads of cash getting tested for everything under the sun in hopes of ridding themselves of this monster. Have I mentioned how insane this is? Hardly a conspiracy. They make a ton of money off of people's suffering. I got a week trial with hearing aids but didn't get them because I don't have $5000 sitting my bank account. Imagine the people that spend years paying interest to get hearing aids and need assistance. Bonkers. But I'm sure they're terribly invested in finding a one time treatment. Although, this next generation is going deaf, and there is money to be made hand over fist.
       
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    15. Vaba
      Shitfaced

      Vaba Member

      Location:
      New New York
      Tinnitus Since:
      Unknown
      Cause of Tinnitus:
      Unknown. Gradual, Progressive
      Calm down everyone, there's no conspiracy... I might not have worded it well at the time but I was trying to complainin about what seems to be a near total lack of interest in a VERY researchable field.

      I'm not talking about developing "magic bullet" cures yet, I'd just like to see more intensive studies being done on things like why mammals dont regenerate cochlear hair cells, or why some people get tinnitus following minor damage and others don't, or hell maybe even just a better audiogram machine that tests more than like 8 frequencies. I mean, what the hell, audiology is such a primitive, stagnant field... if I weren't being held in a headlock by my big strong friend Mr. T at this point in my life I'd definitely try to do something about it.

      I just want to see something, anything, that shows people in the audiology field aren't gonna stay in the hearing aid rut until the end of time. There just seems to be no sense of curiosity in this field...
       
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    16. NineNails

      NineNails Member

      Let's say pharmaceutical companies do have apparently an incentive to sell pills -- for a lifetime but not a cure. That makes no sense whatsoever! Unless we're talking about diseases that are epidemic and life threatening. Last time I checked, T and hearing loss was not life threatening but life destroying and, worse, invisible.
      Either way, corruption always revolves around money. How do banks screw governments?
      @bill 112 ,
      150k are peanuts. We talking billions here.
       
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    17. bill 112
      Studious

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      Multiply €150,000 by every T sufferer and you've got your Billions and then some.
       
    18. NineNails

      NineNails Member

      @bill 112 ,

      You're missing the point, most patients can't even afford 5k hearing aids, which are nothing but sound amplifiers.
      A student in India invented a $60 hearing aid. Now go and figure.
       
    19. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      big pharma isn't preventing a cure. c'mon guys. these problems affect some wildly rich people whose whole career, worth many millions rests on their hearing. all it would take is ONE person going to them directly for this to get out.
       
    20. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Very little in medicine actually gets cured anyway. Surgery is a bit different. I'd settle for an effective treatment regime which is I think as much as medicine would be able to do, but a cure would be more likely to come from the surgical arena. Some more good patient-focused research that went a bit further than "are you upset?" questionnaires would be a start.

      Maybe if we all became a welfare burden on our respective countries, unable to work etc, then the research would take off.
       
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