Talking Tinnitus — a U.K. Expo in Birmingham on Saturday, 15th September, 2018

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Feb 7, 2018.

    1. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I watched it and thought it was well put together and insightful. It’s a shame to hear the stats aren’t so good.
       
      • Agree Agree x 1
    2. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Thanks! Although the internet is brilliant at making things seem larger and more organised than they really are. At the moment we're a scattered group that do what they can when they can.

      We do a lot considering the resources we have, I was especially proud to have some amazing people volunteering their time to help others at the BTA Expo. Along with the ability to contribute to research data that's the strongest thing we have - showing people they are not alone and sharing information and techniques that may help.
       
      • Like Like x 1
      • Agree Agree x 1
      • Winner Winner x 1
    3. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Ed209 There are some brilliant practitioners that have collected extremely value information on different aspects of physical tinnitus. Often they have low profiles. There's just not enough of them to be able to work in team care.

      I could post a hundred more links to where brilliant hands on practice specialized teams helped a patient with physical tinnitus.

      One problem is established medical healthcare with hospital association where team involvement rarely exist for those with tinnitus. Craniomandibular with facial input and ear trauma needs to be team treatment.

      Awareness needs to begin with having proper care given by high profit hospitals.
       
    4. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I read Prof Deb Hall's interview with Tanisha Hammill which is posted on BTA's website.

      That was the second time I'd seen stagnation mentioned, the other was by Josef Rauschecker in his abstract for the last TRI conference.

      Also disparate results which could mean scientists are working in the field in silos and not provided with enough opportunity for exchange of ideas and sharing of results, both positive and negative which are informative.

      With the limited resources available there needs to be global coordination - right now it's DoD with its programs, ATA with its roadmap to a cure, BTA with its own roadmap, TRI with its own goals and initiatives.

      Where is the over-arching coordination that would provide cohesiveness for working smart, a common goal, the route(s) to get there, navigation and continued inspiration and encouragement for researchers?

      I hope it's there and I'm just not seeing it. Without it, tinnitus research is just an overwhelming pile of negative results to run away from and not to learn from.


      Is the Expert Phase "I know nothing" or is it "I know what I don't know?"

      Knowing what you don't know is a good place to be. Complexity shouldn't be a factor that discourages researchers from joining the field, it should be the intellectual challenge that draws them in.

      The challenge is solving the puzzle, but not every piece has to be in place before you know the answer.

      TC
       
      • Agree Agree x 1
    5. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      That is the Dunning-Kruger effect: https://en.wikipedia.org/wiki/Dunning–Kruger_effect

      dunning-kruger.jpg
       
      • Like Like x 2
      • Informative Informative x 2
      • Funny Funny x 1
    6. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hi Ed209,
      If members whom have tinnitus don't show support for all the hard work that went into the Expo and the videos to relay back what went on, and the free time given up to make them, and the cost, then unfortunately it doesn't look great on us.

      A lot more information and videos will follow and put on Tinnitus Talk and Tinnitus Hub and the Tinnitus Hub Facebook Group and Twitter but it would be nice to know it was all worth the effort and members did gain something from the Talking Tinnitus Conference and Expo!

      love glynis
       
      • Agree Agree x 5
      • Like Like x 1
    7. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      The point of my post was to highlight the flaws to most armchair critics’ opinions. The more we think we know the less we probably do, and this applies in many situations. There are too many trolls attacking the wrong people - as @Steve pointed out - which must put key people off.

      I’m all for research, so there’s no reason to convince me. Every new discovery that can be replicated is a new milestone towards a better understanding, and ultimately, an effective treatment. Science and knowledge underpin our entire civilisation.
       
      Last edited: Sep 22, 2018
      • Like Like x 1
      • Agree Agree x 1
    8. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      I sincerely doubt it will be a true cure.

      However I believe that it will train the brain to cancel out the bothersome noise, and seeing that it is not a drug, it is probably the greatest thing we will have until a true cure is found.

      Just my opinion.
       
      • Like Like x 2
      • Agree Agree x 1
    9. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I couldn’t agree more, Glynis. It’s one of my biggest bugbears about the tinnitus community. There’s just too much apathy and expectation for other people to do all the heavy lifting. This becomes very apparent when you become more involved like Markku, Steve, Hazel, and you are.

      They won’t say it because there has to be a level of professionalism, but they must be pulling their hair out quite frequently (I know have). I have crazy respect for all of you guys and all the hard work that you do. I’m surprised there aren’t more benefactors, to be honest, as it’s the least people could do. Not only are the costs high to run Tinnitus Talk, but look at all the effort that is put in to the benefit of all the tinnitus community. You don’t expect anything in return, but I feel more people should be supporting you guys.
       
      • Like Like x 2
      • Agree Agree x 2
    10. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      This has been going on since I can remember. There are certain people who seem to take issue with anyone who has a better opinion(s) or experience(s) and takes great efforts to say libelous remarks. Not to forget very negative remarks on message boards regarding tinnitus professionals or programs.

      I have always felt the "tinnitus god" syndrome has deterred professionals from any participation on social media.

      Even when Matteo de Nora donated about 20 million for the formation of TRI instead of positive reactions the "tinnitus gods" were threatened and destroyed the organization and its formation on other message boards.

      Why not be happy and work together? Different organizations and "tinnitus gods" are instead threatened.

      This happened to my husband and I personally in the tinnitus community. So I very well understand.
       
    11. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      I agree @glynis.

      Why not put the Expo Video on Support here on Tinnitus Talk?

      I do not use any type of social media like Facebook or Twitter or anything else. There are many of us who are not on that type of social media at all for various reasons. So my feedback and thanks are put here on Tinnitus Talk.
       
      • Like Like x 1
    12. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Ahhh, OK I thought it was about the researchers and scientists who I tend to think of as Experts or Key Opinion Leaders, not the armchair critics. So I was thinking more about metacognition. -TC
       
    13. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I posted this image ages ago. I think it’s a brilliant example of perspective and fits perfectly within the world of tinnitus.

      AEDA539A-C9B1-4234-B56D-4986B27106BD.jpeg
       
      • Like Like x 4
      • Helpful Helpful x 1
      • Genius Genius x 1
    14. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      I'm not sure it has stagnated. I've discussed it with Josef Rauschecker before too. I think there's two connected issues. One is there's no overarching strategy (to your second point) and the other is there's no real emphasis to get a product/solution to market. So you see some really interesting basic science projects presented that go nowhere because the team running it don't have the contacts to translate it into human trials, etc. Of course the other side of this is when a device (typically) gets rushed to market with no evidence base. There's a lot of research going on but it doesn't feel like there's a real push towards one area at the moment - bimodal stimulation might become it in the short term.

      We're trying! So I've presented the BTA cure map at TRI and to the ATA board - the feedback was positive so hoping we can move forward with consensus of how to drive curative research forward from a funders perspective.

      I think there's a slightly different challenge. The trials that fail don't get presented or written up - which is a concern in itself. Almost all research presented at TRI/ITS shows a slight/moderate improvement. Makes you scratch your head as pretty much everything seems to work a little. The acupuncture papers are particularly interesting. It seems whatever the 'active' type of acupuncture is that's being trialled works slightly better than the control. Really demonstrates the challenge of researching in tinnitus.

      Think the chart is a (politer!) modification of that. I like to refer on it every now and then to remind myself of the journey I'm on along it.
       
      • Like Like x 2
      • Agree Agree x 1
      • Helpful Helpful x 1
    15. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Thanks @David, great insight and it was a pleasure meeting you at the Expo.

      (Lady with the black glasses)
       
    16. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Again, that's good news.

      I did notice there are things on the cure map that are not cures and are known not to be cures- sound therapies, complementary and alternative therapies, diet, exercise, psychological treatments, multimodal treatments.

      Personally, I think TRI ought to up the game as far as criteria for accepting abstracts and not allow any of those things to be presented at the research meeting. Instead time could be spent in subgroups, workshops, breakout groups, task forces defining the research questions and debating the best way to answer them-- what are the best animal models, what are the therapeutic targets, objective measure etc, etc, etc.

      Many thanks for taking your own personal time to come to Tinnitus Talk and give us your insights. It's very much appreciated.

      The journal of unpublished results has been around for quite a while. The clinical trial registry was supposed to help avoid that. I guess no one enforces the requirement for posting results. If TRI really wanted to examine a failed trial they could invite the investigator and do one of those- what worked well, what didn't work, what could we have done differently exercises in a workshop setting. Those exercises can be extremely useful. I doubt Matteo De Nora would object to his money being spent on that.

      Acupuncture is complementary therapy so one would not expect much of an improvement.

      What is the plausible mechanism by which anyone would think acupuncture would work on tinnitus? Magic? I'm not even sure why BTA would even care about acupuncture at this point.

      The challenge in researching tinnitus is that the cart is coming before the horse- alternative and complementary and psychological therapies are coming first. It should be the medical treatment first and the others added on.

      TC
       
      • Like Like x 3
    17. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      That's actually something that @David has discussed before. A conference that has ideas, where you encourage people from a lot of different backgrounds to come with thoughts, innovations, questions... There are no engineers at conferences, no problem solvers from other fields. Who knows what people from different disciplines may think on how to approach the whole area with its particular problems.

      I'll make special mention of plumbers (that's just for David :))
       
      • Like Like x 2
      • Agree Agree x 1
      • Funny Funny x 1
    18. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Yes it's kind of doing two things at the moment. 1. Is to identify a route. 2. Is to map all research. Would want to heat map it at some point to show where the majority of research happens and where the deficits are.

      To be clear we're not. I've read some of the papers. Just using it to illustrate my point.

      Because they can help SOME, the treatments are there and ready to go. Minimal wait time/investment needed. The medical treatments need a target. This still eludes us in tinnitus. When potential targets emerge then medical companies do and have invested.

      Yeah. Think I lost the room at plumbers!
       
      • Like Like x 4
    19. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      It's worth a try. I have to say in my experience tho, that type of interaction works best when a product is being designed to address a certain need or you're brainstorming new claims for a brand.

      Tinnitus needs some serious research and instead of engineers, you might look to have a mix of the clinical sciences (MDs from ENTs, Psychiatrists, Neurologists) and non-clinical biomedical scientists from similar fields, maybe even some nurses with advanced training in Neuro or Psych to balance things out.

      Also, the group dynamic has to work, some physicians and PhDs need an attitude adjustment. When you have the right mix of people it can be productive and even be fun at the same time. -TC
       
      • Like Like x 1
      • Agree Agree x 1
    20. WaqasVic
      Artistic

      WaqasVic Member

      Location:
      Pakistan
      Tinnitus Since:
      01/2013
      Cause of Tinnitus:
      My T is way different than all of you , ask me how
      This device (Neuromod) will be like glasses for ears :p
       
      • Like Like x 1
    21. JaneFromBoston

      JaneFromBoston Member

      Tinnitus Since:
      June, 2017
      Cause of Tinnitus:
      Began after surgery for left carotid artery aneurism
      Well, maybe you're going to get some delayed reactions. Sometimes we look at these things on the run. So now that I'm set at a computer, I liked it very very much. It was extremely well done and here I am back to get more info, as they said it would take a while to really make all the info available, which makes perfect sense. So add one YES vote.
       
      • Like Like x 6
    22. Karen
      Talkative

      Karen Manager Staff Benefactor Ambassador Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      I just watched the video, and this information really gives me hope that one day soon, there will be a cure --- or series of cures --- for tinnitus! Thank you to all who participated in the conference, and I look forward to hearing more about what you learned there.
       
      • Hug Hug x 4
    23. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Still waiting for the follow up videos! Or did I miss the link to the other ones?
       
      • Good Question Good Question x 1
    24. Markku
      Inspired

      Markku Founder Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      You did not miss anything, they are still coming. A slowing factor has been getting the actual raw footage we need to create the videos. A significant part of the conference and expo was recorded by someone commissioned by the BTA, and we have had to have meetings and discussions on this topic, to figure out the legal and technical aspects.

      We should be receiving around 80 gigabytes of raw footage within the next 2 weeks. Following that, we need to internally figure out what parts we would like to use, what our members and visitors might want to see. We are going to write a conference and expo report as well - the raw footage will come in handy for that, to refresh our memories. Finally, we need to edit the footage and create something cohesive.

      And we also need to make sure that people featured on the videos are OK with being featured.

      Overall, it is a lot of work that goes into something like this behind the scenes. However, I would be slightly disappointed if we didn't have the majority of this work completed and published in a month's time. Let's see!
       
      • Winner Winner x 7
      • Agree Agree x 1

Share This Page

Loading...