Do Not Donate to Research!

Discussion in 'Awareness & Fundraising' started by erniej, Sep 16, 2016.

tinnitus forum
    1. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      I have been following tinnitus research like the ones sponsored by the American Tinnitus Association and The Massachusetts Eye and Ear Hospital since 1991. They ALL promise that the findings MAY help FUTURE treatments. And then they ask for more MONEY. And all the early studies were looking in the inner ear and now they are looking in the brain. I'm afraid where they will be looking next...
      They are nothing but grown kids having fun. When the research grant money runs out everything comes to a grinding halt. And you can't blame them. There's no profit in it. To take it any further, like in the USA, it would take massive amounts of money to get FDA approval for any treatments. Even with FDA approval the money they would have to charge would be prohibitive for those seeking tinnitus treatment because most insurance companies would claim that the treatments were experimental and not cover them. It's like when the drug companies come out with a new pill. They have to charge a lot for the new medication because of the millions of dollars it costs to get FDA approval. Then in seven years when the patent runs out and other drug companies can produce a generic version the price drops.
      Google "Mass eye and ear tinnitus research" Go to their Website. You will see some doctors with silly grins just above a dark box that says, "Please donate today."
      It's all about the money honey.
       
      • Like Like x 1
    2. Foncky
      Doubtful

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2004
      Cause of Tinnitus:
      An explosion, music, and fate.
      You're right, better to do nothing. Live a shitty life with T and die with T.

      At least we won't get our hopes up too high.
       
    3. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      25 years ago researchers promised that there would be a cure for tinnitus in 10 years and that all they needed was MORE MONEY. For 25 years they have done nothing but take, take, take and given nothing in return. I posted this earlier that last week I went to the Massachusetts Eye and Ear emergency telling them that my tinnitus was so loud that I didn't think I could stand it any longer. A doctor told me that there was no cure for tinnitus and to go home and run a fan in the background. But when I go to their Website it says they are "leading the way with cutting edge research." "PLEASE DONATE TODAY!!"
      I would like someone, anyone tell me of any research that has found an effective treatment for tinnitus. And not some double blind study that showed significant improvement in 20% of the participants. And then when the research study if finished nothing happens!!!
      Even then. The only ones that receive any benefit are the ones that participated in the study. And when the study is completed so is their relief from this affliction. And, what about the rest of us?
       
      • Like Like x 2
    4. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      They are still looking into the inner ear. Look up the recent researh and discoveries about hidden hearing loss.
       
    5. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      Yea, for 25 years!!! Nothings come of it. That's my whole point. 25 years. And where have these "research and discoveries" led? No wear. It's been the same old, same old since 1991!
      And what about the people who's tinnitus isn't caused by hearing loss. All that "inner ear research" isn't going to help them.
      After 25 years of inner ear research all that they have come up with is more expensive hearing aids and promises for better treatments IN THE FUTURE.
       
      • Winner Winner x 1
    6. Foncky
      Doubtful

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2004
      Cause of Tinnitus:
      An explosion, music, and fate.
      I really don't see your point. If you want nothing to happen, do nothing. Right.

      What do you suggest ? How old are you ? Maybe you're 90 and don't give a flying f%*$ about your future. If you do, you can criticize all you want, it's fine. But do something then.
       
      • Agree Agree x 2
    7. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I agree with many things you said but more research is our only hope for any relief in the future.
      Unfortunately millions and millions have been wasted on useless projects and "bandaid" (cbt, trt, sound therapy) methods instead of supporting real research.
      ATA is an excellent example of wasted donations!
      In 20+ years they've done nothing more than securing their cushy jobs!
      I'm all for supporting research but I'm not sure there's a genuine organisation out that's more interested in helping us then fillling their pockets!
       
    8. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      What do you suggest? Donate money? I used to run a tinnitus support group. What have you done? Or should I ask, what have YOU ever done that MATTERED except insult and criticize someone for expressing their honest point of view?
       
      • Informative Informative x 1
    9. Foncky
      Doubtful

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2004
      Cause of Tinnitus:
      An explosion, music, and fate.
      I did not insult you. You lost faith, I can get that, but dont' you realize we know a lot more today than 25 years ago ?

      Money was wasted and will be, ok.
      ATA is not efficient, maybe, ok.
      Stem cells research has been delayed because of bad politics, ok.

      Still, there are hundreds of researchers out there who want to find a cure and work on it every day.

      I'm not here to tell you what to do. Just that shouting like you do will lead nowhere. I certainly don't do anything that matters, I'm just contacting labs, professors and doctors to talk about us, to understand what they do now, when their clinical trials will start, etc. I'm trying to raise awareness around me too, without complaining. I do nothing big really, but I also know why things don't go fast enough : because most of us, sufferers, are not trying hard enough to make changes.
       
    10. Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      @erniej I understand your point but your not obligated to donate ....I donate to lot of different organizations its not a lot but I give what I can afford but again I'm not obligated to do so.....If you feel that strong about your stand then don't donate.....But asking people not to donate is a little over the top.
      By the way I've been to Mass ear and eye and altho they couldn't do anything for me they were very sympathetic and caring.....Hang in there man don't get down
       
    11. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Groundhog day on the average tinnitus forum...
      • When will tinnitus be cured?
      • Am I at risk of worsening my tinnitus if I attend a concert with earplugs?
      • Is LLLT a scam?
      • ENTs are useless...
      • Tinnitus organizations are money robbers.
      • Why do I have tinnitus when my hearing is normal?
      • When will tinnitus be cured? (Oh wait, we already asked that once today...!)
       
      • Like Like x 5
    12. Foncky
      Doubtful

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2004
      Cause of Tinnitus:
      An explosion, music, and fate.
      You forgot : ATEOS making fun of the average forum members :rolleyes:
       
      • Agree Agree x 1
    13. MikeP505
      Curious

      MikeP505 Member Benefactor

      Location:
      Ontario Canada
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      Not all research is wasted money. Depends on how you view it I suppose. You criticize 25 years of inner ear research and the amount of wasted funds however maybe we have actually learned MORE about tinnitus from this? Maybe is is so complex that it will take more and more nano research? If none of this research was ever done, you would be crying out.........."why is no one doing research?" Of course money is sometimes wasted but not always. Most research companies and individuals are passionate about getting results. Results solidify the company name and open doors for more funding from past discoveries. They want to find results.

      There is almost 7.5 Billion people on earth today. If everyone sends me just 1 dollar, I will open a lab and hire the best team available!! lol
       
    14. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      You have no idea what I would or would not be crying out. Please don't put words in my mouth.
       
    15. Ecip

      Ecip Member

      Location:
      Edmonton, AB
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      Maybe if the US would spend less money on the military and more money on medical research to do some actual good, we would conquer tinnitus in no time. Their budget for 2011 was $664.84 billion. Think about that for a minute.
       
    16. The Red Viper
      Angry

      The Red Viper Member Team Research

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Leftover infection ETD + neck muscle injury
      In due time my friend. Remember that the solution to some problems aren't simply solved by throwing enough money at it. Money may be necessary in the case of tinnitus but it surely is not sufficient. Good, proper science that adheres to the scientific method and is truly replicable will be necessary. There are admittedly many deficits in this regard with research, not just in tinnitus but in many biomedical research tracks. This is slowly but surely changing with more information coming to light about failures in methodology, etc. The best we can do is wait, donate, or research ourselves.
       
    17. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      You go to a place like Massachusetts Eye and Ear that has a website that brags about their cutting edge technology for treating tinnitus, tell them that your tinnitus is so loud that you can hardly stand another minute of it and then be told to go home and run a fan in the background. Tell me how the hell is that helping someone? Fans today don't make a whole hell of a lot of noise. Go ahead. Go turn on a fan and then come back. I'll wait. OK, you back? How did that work for you? All better? There you go. Problem solved! Your cured and it didn't cost you a cent. Now you won't have to come back here any more!

      If all you have to do is run a fan in the background then there is need to waste all that money on research.
       

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