A Tinnitus Petition Lobbying Governments

Discussion in 'Awareness & Fundraising' started by Ed209, Nov 6, 2018.

    1. 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
      Signed!
       
    2. Sarah200
      Suicidal

      Sarah200 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Cold
      Signed, when I was watching stand up to cancer (I think it was on last week) I said to my mom I wish we had a stand up to tinnitus, she said that would be a good idea since there are plenty of famous faces who suffer with tinnitus.

      But I'm not even sure where to start with such an idea?
       
    3. juliob
      Confused

      juliob Member

      Location:
      Brazil
      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Antidepressants / Loud Sound Exposure
      Signed.
       
    4. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Unfortunately, this petition is crawling along, even though it’s been exposed to a huge chunk of the tinnitus community. It’s quite frustrating that we can’t even get 2000 signatures in nearly 4 months!

      This a massive problem and is very demonstrative of the challenges this condition faces. There simply aren’t enough people putting their heads above the parapet and getting involved. Signing a petition only takes a few seconds and costs nothing, and yet, so very few are prepared to do it. It’s quite astonishing really. What is stopping everyone?
       
      • Agree Agree x 3
    5. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      In 5 months this petition has only raised 2,108 signatures. Why didn’t everyone jump all over this and sign it? It takes no time at all and costs absolutely nothing. It mystifies me, it really does.

      I would say, for many, that more energy has been spent typing up arguments rather than focusing on things that can create a meaningful outcome. It’s a shame to see. We have to realise that even the smallest actions really can go on to accomplish something, but by avoiding all of these opportunities it diminishes our chances of seeing meaningful change.

      Why can’t any tinnitus petition get past 10,000 signatures? We should be generating millions with ease, surely? Or at the very least 200,000 or so. Why does nobody care enough to spend a minute to help out?
       
      • Agree Agree x 1
    6. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Signed.
       
      • Like Like x 2
      • Agree Agree x 1
    7. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      Signed with small donation.
       
      • Like Like x 1
    8. Lane

      Lane Member

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Ototoxic Drug
      Signed -- #2,155
       
      • Like Like x 1
    9. david c

      david c Member

      Tinnitus Since:
      01/2012
      I've decided not to sign this not because I disagree with it but I think the chances of it successfully influencing governments in the UK and USA is pretty much zero. Sadly petitions signed by hundreds of thousands of people seem to have little impact on our UK government which appears to have little "bandwidth" for anything other than Brexit at the moment - so a petition of a couple of thousand isn't likely to have any impact.

      That doesn't mean I don't think there is anything positive we can do about the current situation. There is plenty. Here are three things:

      1. There is money going on tinnitus research in the UK at the moment. Sadly much of it isn't going on the right things. The BTA for example has spent hundreds of thousands of pounds over the last decade on repetitive management strategies research - in most cases simply duplicating clinical trials which have happened in their dozens already.

      We need to be putting pressure on both the BTA and AOHL to start spending money on the Biomedical research into tinnitus which we actually need - for example by working together and creating a joint research fund.

      The ATA seems to have an equally poor impact - though as a Brit I'm not going to start telling Americans what they should think about their tinnitus charity (as Americans equally shouldn't be telling Brits what we should think of ours).

      2. Part of the reason the right research isn't happening is that so much online information about tinnitus downplays its severe impact on thousands of lives. Sadly some of that wrong information is being produced by UK tinnitus charities and by our NHS. We need to start challenging that information -demanding that it is backed up by facts and when it isn't (as happened recently with some information on the BTA website I challenged) that it is removed.

      3. Finally this year does look promising with the launch of the new Neuromod device. There are many hopes riding on this and the clinical trial results look promising - well done Tinnitus Talk for bringing us the information about this. What we as sufferers can do once the new Mutebutton is launched is to share experiences about how effective the new device was and hopefully we can create an online poll in which users are able to rate the device.

      As sufferers we are stronger together. Let's make 2019 the year we finally start to win the fight against tinnitus.
       
      • Agree Agree x 1
      • Optimistic Optimistic x 1
    10. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @david c Would it not hurt just to sign it? It takes like 2 minutes. Someone took the time to start it and while there may be doubts on its effectiveness, we should back other people's good faith efforts for our shared benefit in my opinion, especially when it's at virtually no cost to us. You offered great suggestions but what do you say to the person that doubts your ideas the way you're doubting the petition? Just my two cents, no ill will intentioned.
       
    11. david c

      david c Member

      Tinnitus Since:
      01/2012
      My view is that we need to put our own "house" in order first by making sure that the money which is being spent on tinnitus research is being spent on the right things.That isn't happening at the moment - not in the UK at least.

      It's not about how long it takes to sign a petition. It's about making sure that the research money which is being spent already is being spent in the right ways before we begin asking for more.
       
    12. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @david c I believe that the letter specifically addresses your concerns on funding the appropriate type of research.
       
    13. david c

      david c Member

      Tinnitus Since:
      01/2012
      I've read through the letter again and see that it does address some of the points about the type of research that we don't want specifically:

      "We don’t simply use mathematical data analysis of the effects of stress, sound therapy, etc to show that these are beneficial and pass that off as quality tinnitus research. This kind of research has no THERAPEUTIC value and is a vestige of 80s and 90s era research."

      So you have persuaded me @Watasha - I will sign - let's make sure that the BTA are made aware of this as the type of research it states we don't want is precisely the sort of research that the BTA is currently funding.
       
    14. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      This perfectly sums up why everything is so difficult. You can’t rubbish something before you’ve even read it, and I’d say a petition is much better than doing nothing. If we managed to generate a million signatures in a short amount of time, I guarantee even a petition like this would get a lot of attention. However, just over 2,000 in 5 months will definitely be ignored. In the UK, we have a system where an issue will get a response, and will almost always be discussed in parliament if you get 100,000 signatures. In the US, you get a response from the Whitehouse if you get 100,000 signatures in 30 days.

      A petition can be successful, and more importantly, it starts a conversation around the impact tinnitus can have on society. However, people need to sign them!!

      Maybe we could try again at some point? Get the wording pitch perfect and then throw everything we have at it. knowing we could get this debated in parliament, and for no financial cost at all, is a no brainer for me. I would try using this next time:

      https://petition.parliament.uk/
       
      • Like Like x 1
    15. david c

      david c Member

      Tinnitus Since:
      01/2012
      The big problem with tinnitus funding at the moment is that so much of it goes through organisations such as the BTA - an organisation which repeatedly refuses to spend money on the biomedical research we need and chooses instead to spend hundreds of thousands on repetitive management strategies research we already have hundreds of studies for and don't need any more.

      And the best way to do this is to exclude anyone from making research funding decisions if they themselves make money from tinnitus. It's quite simple - if you earn money from the status quo there's everyone probability that you don't want that status quo to change and money to be spent on the sort of curative research that can only threaten your livelihood.

      Other groups such as ME sufferers worked this out long ago and as a result have had a far greater success in getting the biomedical research into their conditions which we need to see.

      While research money goes towards the wrong things it won't matter how much is spent - we aren't going to see any change.
       
    16. Benoves

      Benoves Member Benefactor

      Tinnitus Since:
      26-9-2017
      Cause of Tinnitus:
      Unknow possibly noise trauma
      Signed.
       
    17. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I searched Tinnitus on the UK governments petition page and this is what I discovered:

      86F49028-8B66-4B7A-8688-38F9BD9F2929.jpeg

      https://petition.parliament.uk/petitions?q=Tinnitus

      Those were the only four that showed up. Three were rejected and the other got a whopping twelve signatures, but it was a pretty worthless petition, to begin with.

      They were rejected because there wasn’t a concise call to action. In other words, it wasn’t clear what they were asking the government to do. If we plan to do this again - but take it seriously - I suggest we learn from these mistakes and make a petition that clearly states what we want. If we can get to 10,000 signatures we will receive a response, and at the very least this will give us some acknowledgement and may even start a few people talking. Small actions can lead somewhere; inaction leads nowhere. Doing this will not cost a penny either.

      I believe we should run two petitions concurrently so that both US members and UK members can campaign directly to their respective governments.

      Here’s the links:

      https://petitions.whitehouse.gov/

      https://petition.parliament.uk/

      We need to get the backing of other organisations such as The Royal British Legion, Help For Heroes, etc, in the UK, and The Wounded Warrior Project, ADVF, etc, in the US. It would be wise to seek help from other organisations as well.

      If we plan it well, reach out for help from organisations that would mutually benefit, and then throw everything we have behind it, I believe we could gather some momentum. Even if we get just a few politicians thinking or talking about this problem then we would have succeeded in my opinion.

      I may hold a poll later to see how many active members would be prepared to join in and help.
       
      • Like Like x 1
    18. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @Ed209 I'm in.
       
      • Like Like x 2
    19. david c

      david c Member

      Tinnitus Since:
      01/2012
      I personally would only support a petition which advocated that tinnitus sufferers should be the only ones making decisions about how any new research funds should be spent and which excluded from decision-making anyone who made money from tinnitus. There are clear conflicts of interests for people who make money from tinnitus taking part in research-funding - they would be extremely likely to favour their own specialism or therapy and would be much less likely to favour the curative research tinnitus sufferers need to see but which could put "corporate tinnitus" out of business.
       
      • Like Like x 1
    20. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      This just popped into my email inbox and is a perfect example of a well-organised, medically driven petition, succeeding:

      C5B6AAF6-C482-4C67-855E-1AE49CCDFFB4.jpeg

      However, I must stress that this campaign was actually backed unlike any of the tinnitus ones. I was a part of this petition and the difference in getting people involved was night and day.
       
    21. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      How is Meniere's disease not a recognized disability?
      mindblown.gif
       
    22. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
    23. GSC
      Question it

      GSC Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      Acoustic trauma.
      This is so low... this is so sad...
       
      • Agree Agree x 2
    24. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I saw this one a couple of weeks back. The problem I see with this is that it’s badly written which doesn’t inspire a lot of confidence.
       
      • Agree Agree x 1

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