Tinnitus Week 2020: Focus on Research — Get Involved!

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

    1. Snake
      Heartbroken

      Snake Member

      Tinnitus Since:
      08/2011
      Cause of Tinnitus:
      Long term playing computer games on headphones.
      I shared the petition on Polish Tinnitus Group and trying to make all of my friends to sign, better late than never. I'm so depressed and feeling on the edge now that I was off the forum, sorry.

      @Michael Leigh I too don't like what BTA were funding in the past but we can see the 180 shift, their proposals aka "Calls To Action" in Tinnitus Manifesto are alright and that's what the petition is for, forget about the past and think about the future or be doomed forever.

      Also if @Markku stands with them then I do too. If you don't trust the BTA then trust Markku, without him you would be without any global tinnitus community and without your voice.

      BTA are also people and I feel that our community is the cause of their 180 shift. It's good because WE NEED A REGISTERED CHARITY to be on our side to be taken seriously. Too bad we can't reach ATA and change their minds too.

      We don't have a lot of allies, we need to be close together with those that want to help us in any way.

      Please share the petition, spread the word, contribute even if you think it's a little because when thousands of people do a little then together we do a lot.
       
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    2. UKBloke

      UKBloke Member Podcast Patron Benefactor

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      @Ed209

      I have a feeling that one side of the problem with slow uptake on the petition lies beyond this community. It seems to me, having posted here for about 7 months that there are many members doing everything they can to fight the good fight but unfortunately we're up against a behemoth. And that's not just tinnitus itself, it's the public perception of it.

      Even with something like cancer (I was closely involved with a UK cancer charity some years ago after my dad died from it) the battle to raise awareness as a means of pushing governments into funding policy changes is a long arduous one. Unfortunately for us in the tinnitus "community" we also suffer from an even bigger problem in as much as many non-sufferers just don't seem to see the issue with a little ringing in one's ears. That is of course until it happens to them.

      I have a feeling we're at a crossroads. The BTA are going to do what they're going to do but unfortunately they have been shown to divide opinion, which will absolutely have a knock-on effect. I think what I'm trying to say is, it's one thing to remonstrate or rue the lack of signature uptake but maybe we need to take a closer look at why the numbers haven't been that impressive to date. We'll often find diversity of opinion within forums and we see plenty of evidence for that here. Sure, we all want a cure, but until we reach a consensus on how to achieve that it can be very difficult to get large numbers of people behind campaigns. Perhaps our problem here lies closer to home?
       
      • Like Like x 1
    3. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      I do think about the future and what the BTA can do for people with tinnitus. I have personal experience of this association. Back in the day I believe it reigned supreme and people that worked there probably had tinnitus so their heart was in it and helping people affected by this debilitating condition but over the years this has changed. From what people have told me who have contacted them for help and advice, it isn't much good. I hope this can change.

      They can start by having people manning the telephones who know about tinnitus. Ideally people that have the condition and not saying: "I don't have tinnitus but can send you information, or you can look online". This is very unprofessional and an inept practice, from an organization that I once regarded at the forefront for treatments and finding a cure for tinnitus.

      Michael
       
      • Agree Agree x 1
    4. Snake
      Heartbroken

      Snake Member

      Tinnitus Since:
      08/2011
      Cause of Tinnitus:
      Long term playing computer games on headphones.
      Then what you want to do? I want my life back, I never lived my life I got it when I was 13. We don't have any other charity that stands by us, I know that they're not ideal for everyone but their points in this petition are GOOD. You're voting here for:
      1. Commit 1% of the health service cost of treating tinnitus towards research to find cures - a total of £7.5m per year to be dedicated to research
      2. Build a long-term infrastructure to ensure that there is the capacity to deliver the quality and volume of research needed to make real progress, building on the work of the committed research community
      3. Prioritise studies that will help establish the key foundational knowledge for tinnitus research, and enable the community to move forward to find cures, including:
        a. Identifying tinnitus biomarkers
        b. Developing reliable objective measures of tinnitus
        c. Identifying tinnitus subtypes
      Are these points bad? I don't think so. You're voting for this, nothing else and nothing more. I never used their telephone line as I don't live in the UK (In Poland in comparison we have N O T H I N G) but what they're trying to push to the government here is good and would benefit the research.
       
      • Agree Agree x 2
    5. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      HI @Snake

      You have raised some interesting points, which I would like to respond to later as I have other things to do at present.

      All the best

      Michael
       
    6. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      That’s why it’s on us to change the public perception of it. It won’t change if the majority remain silent about their struggles; we all need to be more vocal away from forums, etc.

      I think my disappointment stems from the fact that tinnitus sufferers themselves haven’t backed this in large numbers. The worldwide community is large enough to supply 100,000 signatures without needing the general public’s support, and with a real push, we could maybe expect to see some support from the general public also.

      The long arduous journey into policy change has to start somewhere, but if the community those changes are designed to help doesn’t show significant support towards it, then it’s unlikely to start at all.

      I think the reason why the numbers haven’t been good to date is the same old reason: apathy. I have seen too many good tinnitus projects come and go with very minimal support, but signing a petition is so easy to do and costs nothing. Even if there is doubt, people should sign it anyway as there is nothing to lose.

      Undoubtedly, many of those who haven’t signed will continue to complain about the lack of treatments all over the web. What a paradox.
       
      • Agree Agree x 4
    7. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      As I live in the UK I can only speak of the experiences I have had over the 24 years with this condition and the help I have received via the NHS. I also correspond with people in the UK with tinnitus and people that have it in other countries. This is at tinnitus forums and via telephone and email.

      Since noise induced tinnitus is the most common type of tinnitus and it's what I am affected with. My comments will be based on noise induced tinnitus.

      In answer to your question: What do I want? I have had good treatment via the NHS and have nothing but praise for the way I have been treated by my ENT Consultant, Hearing Therapist and Audiologist over the years and including my GP. I hope this continues and I would like to see this level of care, available to all patients that seek help for tinnitus at UK hospitals as I know this does not happen for everyone. The NHS has its problems like any large organisation, but people are eager to talk about when things go wrong not about when they do things right.

      The BTA is a long and established tinnitus association, not some newbie that has just come on the scene. I am 60 and remember people talking about it way back when I was at secondary school age 13. I overhead relatives talking about tinnitus and how troubling it was and remember them saying, there was an organisation called the BTA, one could contact them for help and support. Some may think I'm making this up but I assure I'm not. Little did I know by the age of 36, I would be reaching out to them for help and found it. Their journal Quiet came out every quarter and it was like a lifeline and found it an immense source of help and support. It had contact details of people who were experienced with tinnitus, and volunteered their support via telephone to anyone that wanted it. I had requested help quite a few times. For this reason I now do the same for anyone that wants to contact me at forums, via email or telephone. Whenever I telephoned the BTA, the person I spoke to knew about tinnitus and the way it can affect a person. It gave me reassurance that all was not lost and that there was hope. All this happened long before I had access to the Internet.

      My personal opinion is that the BTA do not need people to vote on the points you have raised in your post. They are a long established organisation and therefore should know all there is to know about tinnitus. By all means work with medical professionals in finding a cure for tinnitus and treatments for it. However, I have no pleasure in saying, I agree with a lot of what david c has said in his post about research money and donations, perhaps going elsewhere and not to the place they were originally intended.

      Goodbye and I wish you well.

      Michael
       
    8. UKBloke

      UKBloke Member Podcast Patron Benefactor

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      Yes, this was essentially my point.

      Tinnitus apathy is something I've been giving quite a bit of thought to lately. I believe one of the reasons patients are apathetic stems from the contradiction between treatment and cure.

      Genuine question: why do you think tinnitus sufferers are apathetic?
       
    9. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      There are three types of tinnitus.

      1. Pulsatile tinnitus is often vascular. PT can increase tinnitus sounds with forms 2 & 3 below.
      2. Physical tinnitus is often something gone wrong within the jaw, facial, neck or ear.
      3. Hearing loss tinnitus - often damage to hair cells.

      All three forms can have overlaying.
      If the cause of one with physical tinnitus is found, sound may reduce with successful treatment.
      If one has pulsatile tinnitus and cause is found and successfully treated, those sounds can be completely turned off.
      With hearing loss and hair cell damage, for many there's no treatment to turn off sounds or at least completely. More research for hair cells and brain activity is needed.

      I've had many in research, some well known, tell me that all causes of physical and pulsatile are known and it's up to care givers to find physical cause and try to treat. I know that that within the largest healthcare systems on the US west coast, that doctors are told to say if just your ears when one has pulsatile or physical tinnitus.

      Neurologists are told to say stretch your neck to relieve occipital nerves.

      Vascular doctors for those with pulsatile tinnitus seldom order ultra sound studies of complete neck and abdominal area. For PT - MRAs and other advance imaging are needed. ECHO exam may also be needed. Blood pressure and pulse examination studies need to done and seldom are.

      For those with physical and pulsatile tinnitus - caregivers doctors and dentists:
      These are thoughts that I have collected from researchers:

      The individual, societal and healthcare burden of tinnitus needs strategic prioritization to improve knowledge and availability of care from healthcare. Most tinnitus research groups understand that tinnitus and pain is of same impact. Indeed, tinnitus impact and chronic pain is as great as, or greater than other priorities in healthcare. We have argued that tinnitus should be ranked along side other conditions within established healthcare.

      We need strategies to help overcome barriers for effective tinnitus care resulting in particular from deficiencies in education and access to interdisciplinary tinnitus management medical services. Healthcare needs to address our concerns and divert to availability of proven treatments. Education of physicians and allied health professionals regarding state-of-the-art tinnitus management and physical treatment is crucial.

      Little process has been made and much more provision and incentivization is required. We support a tiered approach to tinnitus treatments, whereby patients not having satisfying results by non specialists are able to consult a physician with tinnitus competency and then receive the services of other professionals on a case-by-case basis. A fully integrated interdisciplinary team should ideally be available to patients with tinnitus.

      Governments and healthcare systems should ensure that their policies are balanced without undue restrictions that compromise patent care, and that physician education programmes support these aims. Strategic prioritization and co-ordinated actions are needed nationally and internationally to address the unacceptable attitudes of healthcare towards those with tinnitus. Policy makers need to address this as a high awareness. Complete medical exams are needed for those with physical and pulsatile tinnitus.
       
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    10. Jazzer

      Jazzer Member Benefactor Ambassador Hall of Fame Advocate

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Accurate diagnosis and proper targeted treatments.
      Sadly lacking at the moment - certainly in the U.K.
      Well said Greg.
       
      • Friendly Friendly x 1
    11. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I have absolutely no idea and didn’t realise how bad it was until I witnessed a few projects first-hand. I could reel off a few examples but I don’t want to bore you.

      All I know is that the equation looks something like this:

      Action Required > Awareness Created > (possible) Positive End Result

      Somewhere between action required and awareness created is a huge breakdown in those willing to contribute in some way and I don’t know why.

      The current situation looks like this:

      Sign a Petition > Awareness Created > Potential For Government Level Investment Into Curative Research > Increased Possibility of Treatment(s) Down the Line

      There is a breakdown happening at the point of signing the petition. This makes no sense, however, because there’s nothing to lose by doing this, but after reading Michael Leigh’s post it gives a possible explanation as to why. I have no idea how what he said has anything to do with signing the current petition, but it’s an indicator of the inner thinking of some of those who haven’t bothered to do so. The rest is most likely just laziness. Many have the mindset that others will act so they won’t have to and this is a problem in many areas of life. I don’t mean to single Michael out here but he’s the only one who has said anything about this.

      The reality of tinnitus charity work is something like this:

      A Project to Help the Cause > Lack of Action > Move onto Another Project > Rinse and Repeat

      I’ve yet to see a tinnitus-based idea hit the stratosphere, but if people want treatments then we need more action. The current status quo won’t be broken with apathy.
       
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    12. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      The petition started by a guy in Birmingham, UK, to stop trolls being able to say whatever they want, “Caroline’s Law,” has now gone over 130,000 in two days.

      This is what I desperately wanted to see for our petition. I knew by the response on the first day that 100,000 was going to be very unlikely as I’ve been involved with a few petitions now and it’s all about the numbers generated during those first few days. There has to be a logarithmic explosion of signatures as there is a thing called “attention decay” which means the longer something takes the more unlikely it is to achieve big numbers.

      I’m aware I’ve waffled on, but this was an unbelievable chance to raise both awareness and government level interest in research, and we let it sail on by. By that, I mean the Tinnitus community as a whole.

      After 3 weeks, we’re not even at 20,000 signatures :(

      We get more podcast listens than that.
       
    13. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      I read somewhere we only need 10.000 signatures to get a response from the UK government. Is that true or do we need 100.000? (Obviously, it would be better if we had more signatures than we currently do)

      I also think many people with tinnitus aren't even aware of any research taking place or don't think this petition would amount to much even if it got a lot of signatures.
       
      • Good Question Good Question x 1
    14. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      It's true. Only need to get 10,000 to get a response, but it won't get discussed in parliament. Even with 100,000 it wouldn't necessarily get discussed in parliament.

      The UK Government even has it's own website where petitions can be started : "Of the ten campaigns that received most signatures in 2016, four were denied a debate and none achieved their intended outcome or led to real change" "Several claims have been made as to how petitions can be hijacked by internet bots and non-British citizens living outside the UK, to artificially increase the number of signatures to petitions. To sign a petition requires a person to be a UK resident or British citizen, and requires the signature to be verified by clicking a link within a confirmation email. This extra step is considered by security experts to make it harder to use bots to sign the petition. It has also been noted that British citizens living abroad are allowed to sign petitions and would register as having signed from abroad"
       
    15. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      It’s 100,000 to consider a response. It’s not guaranteed, but almost all petitions that get to 100,000 get a debate in the House of Commons.

      On the plus side, we have an advantage in this respect because there are MPs already involved, and the roundtable debate has already happened (which was a great step). However, I wanted to see the tinnitus community drive this home by collecting a large number of signatures, because then you’re likely to get attention from higher government officials, such as the Prime Minister. It also indicates intent and the need for urgency.

      EDIT

      Petition Parliament and the government. Create or sign a petition that asks for a change to the law or to government policy. After 10,000 signatures, petitions get a response from the government. After 100,000 signatures, petitions are considered for debate in Parliament.

      It seems there is a response at 10,000. What that is exactly is anyone’s guess. They could just reply saying “thanks for your petition.” :LOL:
       
      • Informative Informative x 1
    16. Nonomat
      Wishful

      Nonomat Member Benefactor

      Location:
      France
      Tinnitus Since:
      06/2019 (mild) - 11/2019 (intrusive)
      Cause of Tinnitus:
      Noise induced
      I think the French petition performed better because it was spearheaded by a somewhat known figure, Frederic Derban. He is an actor from a former French soap opera: Sous le soleil (not real famous but famous enough I guess). But even then I have no idea of its impact. To the best of my knowledge I don't see tinnitus being considered a handicap in France ¯\_(ツ)_/¯
       
    17. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I think the only way a petition won’t be up for debate at 100,000 signatures is if it is silly or hateful in some way. I think a discussion about tinnitus research would be pretty much nailed on at that level.

      The fact is, nobody cares about 10,000.
       
    18. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      Maybe so, but we aren't going to get 100,000 unless a miracle happens.

      Hell, they're only asking for 7.5 million pounds. That's a total drop in the ocean. Would buy a few very small missiles at most. Really should be asking for much more, but I suppose they don't want to ask for too much at first.
       
    19. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      You have to be taken seriously first and get your foot in the door. It’s about building a dialogue with those who have the power to implement change.

      This in particular (from the government website) explains why a petition may be rejected, and I can’t see how we fall into any of these categories:

      909732EA-B724-4223-891D-5FC41D9F4A78.jpeg
      E4B6FE0E-E361-4EF1-8BD3-0A053AB95624.jpeg

      My concern, as I have stated earlier, is that the people with power will look upon our measly 20,000 and see it as evidence that there isn’t too much urgency. I hope they don’t, but the tinnitus community certainly hasn’t helped itself here.

      From reading a bit more about this, it seems that 250,000 + is the more respected number where issues are taken more seriously.
       
      • Agree Agree x 1
    20. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      Yeah, well no chance of 250,000.

      Was it you who said that there was another petition being circulated at the same time? If that is still going, then this new petition does fall into one of the above categories.

      And, honestly, any good treatment will probably come from the US anyway, but that shouldn't allow our own government to get away with doing nothing.
       
    21. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      That petition didn’t reach the threshold, though, so it’s irrelevant. They are referring to other petitions that have the same call-to-action with enough signatures for them to be worthy of a debate. We don’t have any other petitions asking for a specific amount of money for research.

      I’ve noticed that the petition has been changed to state that it was started by Claire Eveleigh (the girl in the video) rather than the BTA. They have also changed the photo:

      49A8F284-00FC-4EEF-AEAE-29ABDD60F310.jpeg

      I wonder if this was done to give a more human element, or are the BTA trying to help this along by distancing themselves because of the negative criticism of their association?
      This is part of the problem, though. The substandard response in these situations is inexcusable. Enough people have seen this for us to get above 250,000, the problem is that only a tiny percentage have bothered to sign it.
       
      • Informative Informative x 1
    22. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      Yeah, I noticed that they had changed things. It reads and looks better now, but it could still do with improving. For instance, they could delete "Now I’ve found a support group through the British Tinnitus Association, and realised that I am not alone and that people have struggled and come out on the other side and are enjoying life as much as they can with restrictions. I do yoga and mindful meditation to help overcome the anxiety even though I do have my bad days still", and they could add that tinnitus is a hidden disability etc.
       
      • Agree Agree x 1
    23. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      To @Tinnitus Talk,

      I'm just reading all the work during Tinnitus Week 2020.

      Well done everyone and so proud of Tinnitus Talk.
      Sorry not to have been more involved last year and 2020 due to big changes in my life.

      Since December 2018, I have gone from being Married 32 years to being divorced (should be finalized in 4 weeks).

      Life goes on. I have a new grandson.
      I have a great job working with an all male challenging behaviour unit and so proud to be able care for them.

      I completed my Care Certificate and on top of that lots of online training and attending courses... now fully trained.

      All this while coping with blasting tinnitus and hearing loss from Meniere's.

      I'm now very independent and home owner and look forward to life and not dwell on the past.

      Tinnitus treatments and finding a cure is so important for us all and Tinnitus Week every year helps us all push towards these goals...

      Never give up hope.

      I will try pop on more when I can.

      Looking forward to see what Tinnitus Talk gets up to this year.

      lots of love
      Glynis
       
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    24. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      There’s been a gaping hole without you around here, Glynis. A void that only you seem to be able to fill. In other words, you’ve been sorely missed.

      I’m glad you have moved forward with your life and wish you nothing but the absolute best.
       
      • Like Like x 1
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    25. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      I've missed you all so much.

      I work really late and it's 1am before I get to go to bed but I will try pop on more here.

      Missed Tinnitus Week but what a brilliant animated video Tinnitus Talk released.

      Hope you are doing well.

      All my love,

      Glynis xxx
       
      • Hug Hug x 2
    26. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      The petition is at 50,000 and growing VERY quickly. It was only at around 23,000 yesterday or earlier today.

      Wonder if they got someone famous to demand that all their followers sign it?

      Whatever, good stuff!!
       
      • Winner Winner x 3
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    27. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      It's increasing at a rate of 100 new signatures per minute at the moment.
       
      • Like Like x 2
    28. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      Yeah! Let's hope it keeps going.
       
      • Agree Agree x 1
    29. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      That is one very significant leap and is the kind of momentum that could push this into good numbers.

      It’s intriguing how this came about? It has suddenly achieved more signatures in a day or so than it has in its entire run so far. That’s a pretty incredible turnaround.

      I wonder if it has anything to do with the national lottery grant? Whatever it is, I hope it continues as this is exactly what this petition needed.
       
      • Agree Agree x 3
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    30. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      What was the grant for exactly?

      It's at almost 52,000 already.
       
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