"A Waste of Time" — A Few Words About the Tinnitus Week

Discussion in 'Support' started by Markku, Feb 6, 2018.

    1. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      As many of you know, it's that time of year where organizations try to raise awareness of tinnitus.

      In 2016 and earlier, the British Tinnitus Association held the awareness week in the UK in February, whereas in the US it was held in May by the American Tinnitus Association.

      Back then, I remember thinking, "wouldn't it make sense to make the week occur at the same time on both sides of the pond?"

      Lo and behold, a set of discussions later, in 2017, the week was "merged" — ATA and BTA were now holding it at the same time in February.

      Throughout last year we planned for expansion of the week with BTA and ATA. The idea was to get more organizations joining and collaborating together. And that we did, the response from other organizations has been nothing but phenomenal. We put together the Tinnitus Week website to feature the organizations taking part and to list their events.

      All of the organizations are doing the best they can, with the limited resources they have. To us this is a fantastic stepping stone to next year's Tinnitus Week, we can see what works now and what can be improved. This open line between the organizations also helps with other future awareness projects (which can happen outside of Tinnitus Week, mind you). I don't see anything but positives coming from this. Of course we would like to run some dramatic awareness campaigns, something that's never been attempted before, and maybe attracting some media attention in the process, but easier said than done. That doesn't mean we aren't trying to push the envelope though.

      I realize it may not seem much when we run a survey and together with the other organizations ask some questions (side note: BTA, for one, is doing a great deal more though, their Kids Talk Tinnitus campaign is great, and they have also secured some media attention for the week - but do not forget that their organization is much older and much bigger; they have several full and part-time staff), and speak about tinnitus on social media, but even that is more than the community at large is doing. It's very hard to get any support for tinnitus campaigns on social media; a big part of the community doesn't even like our Facebook page or follow us on Twitter, let alone retweet or share our posts. But still some of you somehow expect us to do everything by ourselves and organize the world's most effective awareness campaigns. This just doesn't compute with me. It seems like the tinnitus organizations are sometimes held up to impossible standards and expectations.

      Parts of the tinnitus community can indeed sometimes appear quite demanding and opinionated (of course not everyone!) considering how little many are willing to put in in the form of volunteering their time and skills.

      Recently someone said that the Tinnitus Week is completely useless and a waste of time. This came from the mouth of a tinnitus sufferer. No question about it, I was triggered.

      My response in kind to that is: Instead of complaining, do better. Activate yourself. Activate your inner activist. Become a part of our efforts, or any of the other organizations for that matter, and put in some blood, sweat, and tears. Hasn't there already been enough accusing of tinnitus organizations failing to do anything meaningful? Isn't it time those not happy with the efforts actually showed some effort themselves besides just criticizing?

      I don't think everyone realizes what it really means to put in hours of volunteering time pretty much every day, for years on end, especially on top of your full-time day job. Yesterday @Steve had a full day at his own company, yet he spent 3 hours finishing our Significant Other survey due for launch tomorrow (thank you to those who helped with feedback, by the way!). @Samir was studying 8 hours straight, after which he helped with the survey for more than 4 hours, final message from him clocking in at 2 am his time. I was in contact with BTA, ATA, Better Hearing Australia throughout the day, handled Twitter, posted on Facebook, created a newsletter, updated Tinnitus Talk.

      I've also been pushing the Thunderclap with Emily from BTA, trying to connect with influencers who may support the campaign. The result is that now we have over 1,000 supporters, with social reach four times that of last year. The more contacts we make, the better the outlook is for future awareness campaigns as well. It's always easier when we don't have to start from scratch.

      Besides normal chats, we've had a weekly Skype voice chat on Saturdays for a long time now. Most Saturdays they last around 3 hours. This time Steve could be spending with his fiancée or Samir could be chilling after a long arduous week of studying. Instead all of us wake up and come to Skype first thing in the morning, fresh and all.

      You may have the all-time best awareness idea. Can you make it into more than wishful thinking? Can you actually execute it or help others execute it?

      On our side, @Steve, @Samir, @glynis and I have by far given the largest effort to Tinnitus Week. I've personally sent 427 Tinnitus Week related e-mails thus far in 2018, that's an average of over 10 e-mails per day. I don't even dare to go back to 2017 and see all the back and forth in that time. But let's just say that I genuinely think we're carrying our weight, and it's not like we can solely focus on Tinnitus Week, we have other things needing attention too; for example, this March is a TRI conference which we need to prepare for, too. Steve will be a panelist in one of the sessions.

      Nothing says you can't orchestrate your own awareness week, or your own awareness project.

      A good example is that of @Makrohn - being a filmmaker, he had an idea of a tinnitus documentary, where he films himself, while including bits of other sufferers. I reached out to him about his idea, soon thereafter we had a Skype conference call among the four of us. Now the project is slated for this spring.

      One can tell that Makrohn is the kind of person who practices what he preaches, executes, collaborates. He realizes complaining doesn't really achieve anything if you aren't willing to be part of the change yourself.

      We do have to improve in one area, soon, and that is trying to find and publicly list "bite-sized" actionable items people can volunteer to do. We realize it's not really feasible to expect most people being able to commit long-term like I, @Steve, @Samir, @glynis, @Karen and @erik have done (not forgetting many of our lovely regular contributors without whom we wouldn't be what we are), so offering ways to help with less commitment and time required can be helpful and allow us to do more.

      But if you're ready to take it a step further than a small task here and there, spend your Saturdays with us, have a skill or two that you want to share, and fancy being involved in our core group where we keep trying to do our best for the tinnitus community, to raise awareness and to connect with researchers, we look forward to getting your PM.


      PS.
      I understand tinnitus by its nature presents its own difficulties; a tinnitus sufferer has to be "wired" in a certain way to want to volunteer their time for tinnitus projects. Because most people unsurprisingly want to spend as little time dealing with tinnitus as possible. Then there's also the fact that tinnitus can be so debilitating that surviving each day is work plenty enough. So we certainly have our challenges set for us, don't we. Try to remember that if you are frustrated and ready to shout at us and the other organizations :)
       
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    2. threefirefour
      Peeping tom

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      >Recently someone said that the Tinnitus Week is completely useless and a waste of time. This came from the mouth of a tinnitus sufferer. No question about it, I was triggered.

      I didn't say it that extremely at all, but it was most likely me. Sorry if I made you or anyone else feel that way, and that's not the message I was trying to send.

      I just don't think focusing on awareness is the best way forward. People have a faint idea of what tinnitus is, and even if they learned about chronic tinnitus, they may not care because they don't know how awful it is. They may be apathetic at best and think we're wimps at worst.

      The angle I would advocate, and the angle that is partly covered by tinnitus week, is fundraising. If we could raise funds for a cure then that would be much more helpful in a field with such little funding. It's true we can't do this as well without awareness, so spreading awareness about funding a cure in my opinion is the best way to do it.

      Again thanks to the mod team for teaming up and orchestrating a large event with other tinnitus organizations and communities to spread awareness. Despite my earlier remarks I really appreciate the sentiment and help. Keep fighting for us :)
       
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    3. AUTHOR
      AUTHOR
      Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      It wasn't you @threefirefour I referred to. But thanks!

      Raising awareness of tinnitus has many direct and indirect benefits. Nobody can say with a straight face that there is enough public awareness and understanding of it and how for example loud noise is directly tied to it; we have a huge wave of new tinnitus sufferers coming from the iPod generation. Preventative awareness is in my opinion important.

      Many hide and keep tinnitus to themselves, even if it's a case of debilitating tinnitus, and I feel raising awareness can bring a sense of togetherness, make it easier for people to reach out to support groups and organizations for advice and help. And maybe some of them pay it forward in the future by volunteering themselves or donating funds. By raising awareness, organizations reach more people which in turn may help them secure more funding for research (several of the Tinnitus Week organizations have funded and continue to fund tinnitus research).

      Just ahead of Tinnitus Week BTA published news of this study they funded, about how costly tinnitus is to the UK society. This is great for awareness, makes people think, and also potentially helps with future government level funding bids for tinnitus research and projects. Think about ESIT and TIN-ACT, both got several millions of euros from the EU.

      For over a year we raised awareness of the Frontiers research topic on tinnitus, which is in the 1st place now, and is hopefully a strong contender to win the Frontiers conference award for $100K later this year. Frontiers is a major publication and winning this conference increases recognition of tinnitus and hopefully helps gain the interest of more brilliant researchers and funding agencies.

      With awareness, one can follow the other. The more attention tinnitus gets, the better the chances are for improved funding, too.

      In any case all of us can only win by being active, and not get suckered into "nothing to be done, nothing will ever get better" mindset.
       
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    4. carlover
      English

      carlover Member Benefactor

      Location:
      London
      Tinnitus Since:
      1986
      wow Markku and you other guys .....just wow and love
       
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    5. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      I have been with TT along time now and I know just how hard @Markku,@Samir, @Steve,@Karen etc work behind the scenes.
      I also spend a lot of time with them and it's a pleasure and more help would be wonderful.
      Love glynis x
       
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    6. Makrohn
      Supportive

      Makrohn Member Benefactor Advocate

      Location:
      Norway
      Tinnitus Since:
      1996
      Cause of Tinnitus:
      Hearing loss - Explosion - Stress
      I am thrilled and honoured to be able to contribute with my forthcoming movie project in order to create more awareness on Tinnitus research.

      I see there is some focus on how the world and media perceives us with Tinnitus and that there might not be enough suffering to pursue a possible cure because, after all "we can learn to live with it". Well, in my case, I have no choice but to live with it. I am 100% sure many would opt for the other choice in my situation, and I have been there myself many times, but always managed to get back on track with my life. I have moderate/severe hearing loss which will get worse with age, and I have multiple toned tinnitus 24/7. I would give my right arm for a cure tomorrow, no questions asked.
      And this is perhaps the message media should get.. not all the stories about those who manages to live with this condition. Of course, reading about other people in the same situation being able to live and enjoy life is positive for many of us, but for some it makes the situation worse. Habituation is individual, and the road to get there is different for all of us.

      I would gladly help more with the TT community in every way I can.
      Because I know that this forum makes a difference, and we need to keep pushing for a cure.. Who else will do it for us?
       
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    7. SCORPION

      SCORPION Member

      Location:
      DETROIT MI
      Tinnitus Since:
      1995
      Cause of Tinnitus:
      Usmc shooting weapons
      Well we as a whole need to raise awareness on the importance of hearing protection!

      From cutting the grass to wearing head phones. It's not always the decibels but the time and length of the exposure . We need to push for hearing protection education. Not enough is being said or seen. I have not seen many people being that proactive and just abusing the hell out of their ears.

      I work in a steel mill and I have to say out of the 23yrs I have been working for them , it's been only a hand full of years that they are now raising awareness in our industry about the hearing protection .

      But the sad part is we're not passing it on down to the kids that are wearing
      head phones or ear buds playing video games or Jamming loud music in their ears is where we're missing the point we need to bring this home before the real damage is done . There is enough of a us suffering with tinnitus that we can be a huge voice to help out others is my goal because we know how horrible it is to hear the ringing all day long and plus when it can be prevented.
       
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    8. attheedgeofscience
      No Mood

      attheedgeofscience Member Podcast Patron Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      Concerning awareness, that is an underlying theme of the following 20-minute video which was produced some five years ago. It features Eddy Temple-Morris from the plug'em list of ambassadors – and he can be seen specifically talking slightly sarcastiscally about the misallocation of funds at 18:25. The video also features several other personal portraits of people who developed tinnitus in various ways and the impact it has had on their lives (including reflections of regret and lack of awareness). In addition, the video touches slightly upon the research being undertaken at the time (i.e. five years ago now). I remember watching it not long after I had developed tinnitus myself back in 2013.

      Tinnitus - The Loud Silence


      When it comes to awareness, and regarding what works and what doesn't, it's easy to assume that the suicide stories that make the headlines are somehow helping the cause, because, well... because it makes the headlines! But, when it comes to headlines, there is always the next story – and – unless a given episode somehow has a lasting effect, by next week, it will be forgotten. So... to "stay the course" is essential and the Frontiers Research Topic is an example of just that.

      And lastly, just a few words about advocacy and personalities – few will ever become good advocates, but those who do, have the following traits.
       
      Last edited: Feb 7, 2018
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    9. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      If you go on Tinnitus Hub or YouTube you can see the fantastic work @Steve and @Markku do creating short tinnitus videos.

      The ear protection music event was great and Mental Health Week video was down to my idea and they both made it possible.

      This year's #TinnitusWeek video with @Steve talking and @Markku working his magic and for Elmer's video for #TinnitusWeek

      It all take lots of free time to make and make such a big impact to be proud of.

      More support would be wonderful...
      Love glynis x
       
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    10. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      The internet is a funny thing.

      It offers everyone the opportunity to stand up and be counted, to take part and make things better for everyone. Without the internet the effort we put in would have significantly less impact.

      The majority unfortunately use the internet as some kind of outrage platform. It's fine and good to vent but after a time it serves little to no purpose.

      Some people have turned the annoyance and frustration into action, to try and do something that makes a difference in whatever way they can. I wish that more would do it because we could have an amazing movement pushing for change.

      As pointed out above, you have to be driven. However, if having tinnitus won't drive you to make a difference to others with it, and force change, then I don't know what can.
       
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    11. VincentWinters
      Dreaming

      VincentWinters Member

      Location:
      Essex, UK
      Tinnitus Since:
      Aug 2017
      Cause of Tinnitus:
      unknown
      I was alway worried about never hearing silence again, but its true you never really hear silence anyway. There's always a background noise you're tuning out, why not one more?
       
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    12. david c

      david c Member

      Tinnitus Since:
      01/2012
      I don't think tinnitus week is a waste of time. But I do think that I lot of the work done by the BTA (and I expect by the ATA) is not only NOT helpful for those suffering from tinnitus but also in some cases may be actively harmful. In this regard it's really important to realise that the BTA isn't run primarily by or for the benefit of tinnitus sufferers but by those in the audiology industry and the CBT-related professions (you only have to look at their list of trustees and advisors to realise this).

      What difference does that make? Everything. Here, we have a great deal to learn from those brave sufferers of ME. They got wise to the fact that those in the medical and CBT therapy professions apparently seeking to help them were in fact doing anything but. They were actually trying to Monetise ME for CBT therapists by seeking to class it primarily as a pyschological rather than a physical condition. Read:
      https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
      for more information.

      Despite suffering from a crippling condition ME sufferers fought back - challenging apparently reputable studies published in the Lancet by forcing the disclosure of the raw data behind the studies which showed the real ineffectiveness of CBT therapies for ME.

      What the ME sufferers had realised most of all was that the research money they had helped to raise which should have been spent on developing real medical treatments and towards the long-term goal of a cure for ME was in fact being squandered on trials apparently proving the effectiveness of CBT (when the raw data showed the opposite). That's exactly what's happening to tinnitus sufferers. Money you believe you are raising towards the aim of a cure is in fact being squandered by the BTA and ATA on endless CBT studies designed to monetise tinnitus for CBT therapists. Look at the research studies actually funded by the BTA and you will see the great majority fall into this category.

      So yes, support Tinnitus Week. But don't waste your cash on supporting the BTA or ATA. There are other groups which do far more for tinnitus sufferers.
       
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    13. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Yes, fought back not each other like people with tinnitus do!

      Great post @david c!
       
    14. JurgenG
      Approved

      JurgenG Member Benefactor Advocate

      Location:
      Belgium
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Loud noise exposure / headphone accident maybe?
      Thanks for all the effort your guys did! This is far from a useless initative, and can only help the find for a cure and spread awareness, step by step.
      I have to admit I didn't contribute as much as I could. I am trying to stay away a little more from everything T-related, because I've been dealing with it far too much in my personal life. And seem to benefit more from giving it less attention. But as always, this got my support!
       
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