Tinnitus Week 2020: Focus on Research — Get Involved!

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Feb 1, 2020.

    1. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

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      It's good that tinnitus is in the big papers, but I find this article gives a very mixed message (but then I suppose tinnitus is a very mixed condition).

      I wish they would mention that LOTS of drugs can cause tinnitus, not just antibiotics, chemotherapy drugs and aspirin. Also, the following sentence, can be read as meaning there are only 320,000 people in the UK with persistent tinnitus: "But an estimated 0.5 per cent of the UK population (around 320,000 people) will have persistent tinnitus, which interferes with their daily lives". I wonder where they get the figure 320,000 from anyway.

      I didn't like the part about 'treatments' either, but I suppose we should be thankful the condition is getting plenty of press.
       
    2. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
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      We need press. The Daily Mail is a tabloid... however it has a big readership.
       
    3. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
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      09/2011
      @Ed209

      Are you happy with the results?
      I know it could be better but this is better than any other attempt in the past right?
       
    4. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
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      Syringing
      It does surprise me how the French tinnitus petition apparently got over 40,000 signatures, but this one is still only at 15,000+ even though there's been quite a bit of promotion for it.

      I wonder how the French petition did so well?
       
      • Good Question Good Question x 2
    5. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

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      The petition has over 17,000 signatures now. Do we know if this was successful? Have the MPs in the UK committed to more funding for tinnitus research?
       
      • Good Question Good Question x 2
    6. all to gain
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      all to gain Member Podcast Patron Benefactor

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      I'm not sure about your questions, but I wonder how the government will look at the petition as it was not a petition on the official petition site: https://en.wikipedia.org/wiki/UK_Parliament_petitions_website

      Presumably it makes no difference as surely the MPs involved in this petition would know about the correct procedure.

      https://www.gov.uk/petition-government
      https://petition.parliament.uk/help
       
      • Informative Informative x 1
    7. all to gain
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      all to gain Member Podcast Patron Benefactor

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      Seems that a petition can be made through an MP also, so maybe this is the way they are doing it this time. But I don't know the ins and outs of all this. I'm sure they must be doing everything according to protocol.

      https://www.parliament.uk/get-involved/have-your-say/petitions/paper-petitions/
       
      • Informative Informative x 1
    8. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Not at all, Val. In my opinion, the current numbers are pathetic and have been since the petition began (considering the reach it has had).

      I promoted the hell out of it and tried my best to get as many signatures as was humanly possible, but it seems the majority of the tinnitus community can’t be bothered to take a couple of minutes out of their day to sign it. Most will complain about the lack of money going into research, but when something comes along that can help the situation where is everybody?

      Is anyone else experiencing deja vu?

      Honestly, what will it take for the tinnitus community to back something in large numbers?

      I mean check this out: a petition was started by one guy 22 hours ago asking for the Premier League to scrap VAR (video-assisted referee).

      This petition has already received far more signatures than ours has in less than 20 hours by word of mouth. It’s currently at nearly 21,000.

      https://www.change.org/p/the-premie...tant-referee-var-from-premier-league-football

      What’s the tinnitus community’s excuse?

      I posted about it multiple times in every support group going and got every friend and family member to do the same, and I asked them all to share it as well. I watched as it crawled along in disbelief if I’m being honest. It’s had national TV and press coverage, many influential people have shared in via Facebook and Twitter, and it’s been shared across multiple support groups from various countries. In short, it’s been seen worldwide by a vast amount of people and only 17,000 have signed it in two weeks!

      This petition is now more than likely working against us, if anything, as the government will view this response as proof that it’s not urgent at all. We should have smashed 100,000, easily; enough people have seen it, but only a very small percentage could be bothered enough to sign it. There is too much apathy and expectation for others to do all the work all the time, and when signing a petition is too much to ask then what’s the solution?
       
      • Agree Agree x 3
    9. all to gain
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      all to gain Member Podcast Patron Benefactor

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      I looked at this, but as far as I can see it was started 3 months ago. Where does it says it was started only in the last day? Maybe I am missing something.
       
    10. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

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      07/2015
      Yea, I noticed that this morning and I was about to make a post to correct what I said. The confusion came from me seeing the highlighted box saying “20,600 signed 22 hours ago.”

      My mistake, but my point about the tinnitus petition still stands. I’m very disappointed in its performance so far. We should have a lot more signatures by now. It’s very underwhelming and not a great message to send out, in my opinion. The BTA is trying to get more signatures via sponsored ads now; that’s how desperate the situation has become.

      I’m saddened to know that there are hundreds of thousands - if not millions - of people out there that saw no value in signing it. It takes no time at all and costs nothing. There’s no excuse.

      Imagine the message we’d have sent out if we got well over 100,000 signatures in less than a month.
       
      • Agree Agree x 5
    11. all to gain
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      all to gain Member Podcast Patron Benefactor

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      It is dissapointing, especially considering anyone anywhere in the world can sign it. Still, let's hope it can reach at least 25,000.

      Most people with tinnitus, it seems, really just do get on with it as they've been told nothing can be done about it. Apathy. That and not enough people know about the petition, even though there has been national coverage. Plus, I think some of the coverage has given a confused message.

      Over 100,000 is the golden target though, as then it would possibly get debated in parliament. Still, a petition over 10,000 should receive a response from government.
       
      • Like Like x 1
    12. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Most comments I got in German support groups were along the lines of "Why should I sign this? It's happening in the UK, not in Germany". There's no getting through to these people, they'd rather live miserable lives, trying to tell themselves they're struggling because they're just not positive enough instead of admitting that they'd need an actual treatment to be able to live a better life.

      I even got told "tinnitus is 90% psychosomatic anyway".

      Obviously, there are also other reasons why people with tinnitus are so indifferent towards research. Decades of barely any research leading us nowhere, broken promises of new treatments that turned out to be scams, a heavy focus on TRT, CBT and mindfulness, being told over and over again that we don't actually need treatments, that we can all learn to tune it out and that there will never be a cure in our lifetime anyway - all of that ultimately lead to desperate sufferers clinging to 'mind over matter' as there's nothing else left for them to try if they don't achieve it and deep down they know it.
       
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    13. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

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      I contacted the German Association about the petition, but I never heard back from them. I had contacted them before about something else and immediately received a reply. Can't people see that getting more tinnitus research funding is for the greater good, regardless of where that research is taking place? Apparently not.

      I'm going to try some groups in Russia, too. See if I can muster up a handful of other signatures.
       
      • Like Like x 3
      • Informative Informative x 1
    14. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

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      I even tried to get a dialogue going to try and understand if there were some unknown reasons as to why so few wanted to sign it and promote it. I then discovered that some people said the link didn’t work, but it’s worked for everyone else so I doubt this was a big reason. Another person told me that it wouldn’t let him sign it, but when I asked others if this had occurred with them, nobody came forward to say that it did, but some did say they had no issues.

      The tinnitus community can be such an enigma at times.

      “Just sign the damn petition!” (This should be the BTA’s official slogan :D).
       
      • Agree Agree x 1
    15. david c

      david c Member

      Tinnitus Since:
      01/2012
      Interesting. I don't know that much about the French petition and which organisations were backing it but certainly speaking from a British perspective I know that there is a lot of deserved skepticism about the BTA's track record. It has for too long gone on about "for the vast majority tinnitus isn't a big deal" and has identified with the interests of those who those who make money from tinnitus rather than tinnitus sufferers. It isn't surprising therefore that this petition isn't doing well by comparisons with the French one.
       
      • Agree Agree x 1
    16. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

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      07/2015
      A couple of friends shared this petition on Facebook about an hour ago and it’s really flying.

      https://www.change.org/p/instagram-make-social-media-a-safer-place

      Ironically, this one really was started 20 hours ago and it’s up to nearly 10,000 signatures already and it’s rising rapidly. In comparison, we had fewer than 1,000, and even after the big opening push (which was technically 3/4 days in), we still only got to around 1,500 - 2,000.

      I know I’m flogging a dead horse here, but I still for the life of me can’t understand why.

      The petition above is aimed at restricting or stopping online trolls on social media platforms in the wake of Caroline Flack’s death.
       
    17. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      This was a great initiative by the BTA, but unfortunately, it lacked the backing by both the tinnitus community and the general public. However, it was on us to get that message across to the government and we failed.

      There is still time, so it’s not completely dead in the water yet, but the longer it goes on without a significant rise in numbers, the more unlikely it is that we’ll ever see 100,000 plus signatures. Ideally, it needs to happen in a timely fashion as well. I know that The Whitehouse, for example, only reviews petitions that have received 100,000 signatures within 30 days.

      The BTA can’t be blamed for everything. Sometimes the tinnitus community has to hold its hands up and say, “we didn’t do enough.”
       
      • Agree Agree x 1
    18. Barbara777

      Barbara777 Member Benefactor

      Location:
      USA
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      Like, how many reading this post asked their family and friends to sign the petition?
       
      • Like Like x 2
    19. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

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      07/2015
      I reckon I got at least 200 signatures. We all have to come together though, otherwise, it’s fruitless. Strength comes with unity, and without it, we’re just individual voices that are too quiet to be heard.

      I wasn’t just getting friends and family to sign it, I was also getting all of my students and their families to sign and share it as well. It was hard work.
       
      • Like Like x 1
    20. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
    21. david c

      david c Member

      Tinnitus Since:
      01/2012
      I'd say if anyone is responsible for this petition's failure it's the BTA. Telling donors that you are taking their money to spend on curative research and then - as the BTA has over many years - spending it on endless CBT and Mindfulness studies instead breeds distrust. It's not surprising that people don't believe them now.
       
      • Agree Agree x 2
    22. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

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      07/2015
      Signing the BTA’s petition has nothing to do with donating money, and your posts are counterproductive towards the goal. You are actually influencing people in the wrong direction by putting them off.

      It costs nothing to sign and it takes seconds. There is literally no possible downside to this, there can only be an upside.

      Why haven’t you supported and helped promote this campaign? It is directly lobbying the UK government for more money towards curative research. It is absurd to be against this objective.

      The petition is in support of this:

      633BE06A-2B86-4453-8BF6-19E4424150A1.jpeg
       
    23. david c

      david c Member

      Tinnitus Since:
      01/2012
      The lack of success of this campaign has nothing to do with any individual member of Tinnitus Talk and everything to do with the distrust of the BTA by thousands of tinnitus sufferers in the UK. Using research money to pay for their jaunt to sunny California for a week was just the latest example of their misuse of funding.
       
      • Agree Agree x 2
    24. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I give up.
       
    25. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      Fully agree with you @david c I am sorry to say, I do not believe the BTA is as good as it was when I joined 24 years ago. Most of the people there haven't got a clue about tinnitus because they have never experienced it. Disgruntled people have contacted me, after been told by staff that work there: I haven't got tinnitus but can send you information - there is also information online. Charming. I believe donations are to fund their lavish dinners and tea parties at tinnitus conferences and seminars. Hosted by ENT doctors that are physicians and know about the anatomy of the Ear, Nose and Throat. Treat underlying medical conditions that might be causing the tinnitus but these doctors know very little about tinnitus as most have never experienced it. If they have it is likely to be mild.

      I will give credence to Audiologists and Hearing Therapists that specialise in treating tinnitus patients, with or without hyperacusis. These health professionals will often have a good understanding on how these conditions affect a person's mental and emotional wellbeing. Most (but not all) were either born with tinnitus or acquired it at some time in their life.

      Michael
       
      • Agree Agree x 1
    26. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

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      07/2015
      With all due respect, Michael, what has any of what you said got to do with the petition? Jack the Ripper could have organised it; it would still be a petition requesting more money for curative research from the government - which is what we want and need.

      Did you sign and share the petition amongst family members and friends?

      What’s lacking is commitment from the tinnitus community itself in these situations. We can’t sit around doing nothing expecting miracles. A quick signature from everyone would have sent a strong message to the UK government that funds are desperately needed. Instead, we got a very poor response which sends quite the opposite message, in my opinion.

      For once, we need to stop blaming everyone else all the time and take a look at our own contributions. David C is a troll, so his/her response is to be expected, but it’s surprising to see you write what you did as it seems like you haven’t read what the petition is for. This may be the crux of the problem and why the numbers are so low: people aren’t reading what the petition is all about.

      As I’ve said many times now, I can’t think of any reason or excuse not to sign this petition.
       
      • Agree Agree x 2
    27. Jazzer

      Jazzer Member Benefactor Ambassador Hall of Fame Advocate

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Well said Greg.
       
    28. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      With all due respect I was corresponding to @david c That is my opinion of the BTA and I shall not be commenting further.

      Goodbye
      Michael
       
      • Agree Agree x 1
    29. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      What about the petition! Forget the BTA.

      Do you think we need a viable treatment or cure? Do you agree that tinnitus research is incredibly underfunded?

      If so, sign it.
       
    30. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      With respect, I do not wish to correspond with you.
      Goodbye and I wish you well.

      Michael
       
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