Many Thanks to This Forum

Discussion in 'Support' started by Roy114, Jul 30, 2018.

    1. Roy114
      Thinking

      Roy114 Member

      Location:
      The Netherlands
      Tinnitus Since:
      2/2017
      Cause of Tinnitus:
      Noise exposure (music festival)
      Sometimes I wonder where all the good people went. This world seems to be filled with so much negativity and hatred. Yet somehow when I come to this forum, a place where alot of people are suffering, I find the nicest people I've ever met. Is this because of our shared suffering, or even goal: to make the most out of our lives no matter what? I love this forum for its people. Sometimes I wish I'd meet you all in real life.

      This thread might go unnoticed but for the people that are reading, I wanna thank you for being here, reading the stories of others, and responding/supporting where needed! You are appreciated! It truly amazes me how nice people can be when they have someone like tinnitus in common.

      Let's make the most of this warm weather and enjoy every bit of it. I just spend my day swimming in a lake, and even though my T was there, alive and kicking, I still had fun.

      Edit: As I'm looking in the mirror I realise I should've worn a bit more sunscreen.
       
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    2. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Roy114 your post is wonderful. Thank you. So nice to see that you had a great day at the lake. Oh...sorry about your sunburn....
       
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    3. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      This forum is special indeed. It only gets better & better!
       
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    4. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      the only reason this forum exists is to raise awareness for scientists and researchers etc to help us.
       
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    5. AUTHOR
      AUTHOR
      Roy114
      Thinking

      Roy114 Member

      Location:
      The Netherlands
      Tinnitus Since:
      2/2017
      Cause of Tinnitus:
      Noise exposure (music festival)
      I think this forum exists to offer support to people who need it more than anything else. This forum doesn't really raise awareness to people that aren't already aware of the issue, for example: I only found this forum when I actively searched for one like it. Also the cure is already on its way so why bother. As far as I know it already exists, just need it to get past 4 years of testing. Until that moment arrives this forum is here to engage in conversation about tinnitus and how we are coping.
       
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    6. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      This forum is a gift. It doesn't matter what the reason is, that it exists. This forum and it's mentors are amazing, I wish this forum was around when I was a teen (30 years ago)...I would have had hearing that would not be at -75 db loss and my tinnitus would have never reached the HELL status it is now. Even with my current situation, I am still excited about the life I have. I look forward to a new day, new opportunity, new way of impacting someone's life.

      Bless those that help those that suffer
       
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    7. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      This is a support forum, most often found by and contributed to by individuals struggling with tinnitus. How many researchers are members?

      Scientists and researchers are not likely interested in reading this forum. If they are working towards treatment or a cure, then they are already aware that we need help.

      I have a family member who is a medical researcher, she does not spend her working hours nor her free time reading online forums looking for who needs help. If she would like to learn how a condition impacts individuals, she has other resources with more concrete, medically-supported data versus an online forum.

      That’s not to say there is not good data here; however, she needs very sound data backed by studies for funding purposes. She couldn’t just say, well someone on an online forum says . . .
       
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    8. RingerBell

      RingerBell Member Benefactor

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      I think that it could be beneficial for a researcher to lurk here. Quite often people here, independently of each other, describe very similiar symptoms and behaviour of their tinnitus, like spikes, fluctuations, reactive tinnitus, sound distortions etc. Reading these stories where people describe how and why their tinnitus affects their daily life can provide ideas what concepts to formalize and study as they plan their research and surveys for data.
       
    9. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      There are other resources available for securing that information. For funding purposes, they need solid information supported by data and controlled studies. They are going to struggle to secure funding for expensive research if their source is quotes from an online forum.

      ETA: And yes, it could give them an idea but so could anything. An ear specialist and researcher that I saw gets his ideas from patients and colleagues. Not from an online forum and incidentally not from any memes complaining about TRT.

      He’s well aware of our condition and the many possible symptoms and nuances, and he was aware of this long before most of us acquired tinnitus.
       
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    10. RingerBell

      RingerBell Member Benefactor

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      I didn't say that the funding applications should contain somebody from the internet forum as reference. Of course I agree that the bigger and more expensive studies involving medical procedures should be based on existing studies and knowledge of medicine.

      But not all studies are big and have the most experienced tinnitus experts in their team. I could imagine someone in the field of neuropsychology doing a case study of a few tinnitus patients as PhD or some other degree could really value from reading the discussion here when planning his research and preparing for the interviews. Case studies don't require large datasets as they are detailed examination of the subject(s) of the study.

      If I recall correctly there have been surveys used for minor studies here in TT.
       

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