Stop Giving Money to the British Tinnitus Association

Discussion in 'Awareness & Fundraising' started by Gl0w0ut, Apr 10, 2019.

    1. Kain
      Disappointed

      Kain Member

      Location:
      California
      Tinnitus Since:
      March, 2018
      Cause of Tinnitus:
      earbuds
      My disappointment is immeasurable, and my day is ruined.
       
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    2. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
    3. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
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    4. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      WOW. It’s dreadful that this is being taught to people who deal with tinnitus patients. I think the problem with psychology based research is that it can so easily be over extrapolated and misinterpreted. ME being a classic example @david c.

      As far as I understand it, all the evidence actually shows is that loudness isn’t directly predictive of distress. I.e., some patients have loud tinnitus and are not too bothered by it, and others have quieter tinnitus and find it quite distressing. THIS DOES NOT MEAN THAT LOUDNESS DOES NOT MATTER!!! Like many others, I have highly variable tinnitus and I find the quiet days extremely easy to deal with but the loud days very challenging. Loudness makes all the difference for me. Similarly there are very many accounts here from people who had quiet tinnitus for years and handled it perfectly well, then it got louder and they now find it very distressing.

      As for “it’s not that bad”, what a terrible thing to teach others. It seems to be judged on whether or not the tinnitus is actually as loud as rustling leaves? But it cannot really be said to be as loud as anything, as it is a phantom noise and does not truly exist. Surely the relevant level of noise is masking level? And on days when mine can be masked by rustling leaves I am pretty relaxed. On days when it takes motorway traffic to mask it I am less relaxed.

      Jeez.

      I worked in bench science academia for years and I thought I’d seen a lot of crap but medical science often comes off of some sort of buffet lunch for researchers with patients as the research project food.
       
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    5. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Absolutely agree, it’s a no brainer.

      Well when we input into NICE we need to be pushing against any of this stuff. Having said that a patient does need some help with coming to terms with it and not get sent home to get on with it. That is neglect. I mean in this country we should have a bed allocation for someone who is not coping with this. If money were no object we should have residential facilities with counselling for initial distress. I would love for there to be a residential clinic.
      For tinnitus itself we need a treatment and investment in finding treatments.
       
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    6. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Hopefully the hearing loss drugs being tested will be that treatment.
       
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    7. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      I think it is particularly important to at least treat someone unable to deal with their tinnitus with sympathy and respect. If clinicians are attending presentations, reading papers that say "It's not that bad" then that will lead to people be treated as if they are over-reacting, as if they are being wimps, and being told "just live with it". And that is just not the right way to deal with someone suffering badly with this. Yes, for some reason, some people don't care about loud tinnitus, but others really do, and if the only treatment is acceptance, trying to view it is less of a problem, that HAS to be handled with sensitivity.
       
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    8. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Well said you guys!

      NICE need to know this and to hear it from you!

      Giving input to the NICE guideline is the BEST WAY to counteract this kind of thing.

      You guys in the UK, PLEASE put yourselves out there. There is nothing, nothing to loose except insensitive treatment of tinnitus patients.

      @Candy, @Agrajag364
       
      • Agree Agree x 1
    9. david c

      david c Member

      Tinnitus Since:
      01/2012
      What you realise about the BTA if you've been observing them as long as I have is that they will say pretty much anything to please their audience regardless of how factually accurate it is. @David for example says that he wasn't emailed by NICE asking him and the BTA to promote awareness of the lay members positions on NICE's tinnitus advisory committee. But NICE have told me in a Freedom of Information request that he and the BTA were emailed. The fact that it is a Freedom of Information request means that for NICE not to be telling the truth would actually be breaking the law - so I know who I believe about this.
       
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    10. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      That is exactly the situation and it's highly likely you/we will never know the truth. So, I ask myself, what difference would it make today, to the current situation, if we did learn the truth at this point in time? Probably very little, which is why having Tinnitus Hub/Talk as a stakeholder is so very important.

      I would go so far as to say input into the NICE guideline through this route is the single most important project on Tinnitus Talk. It's not only directly and highly important to the UK tinnitus community but it's indirectly important to communities in other countries as well.

      Although the healthcare systems are different between the UK and the US, many of the issues may be the same. It will be both interesting and useful to know how regulators view and react to these issues, in other words what went well and what could be tried differently or restated, next time.

      TC
       
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    11. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      So what do you think would be the motive to lie?
       
    12. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      It will be an important test case indeed!

      I don't know if we could replicate it so easily in other countries, since we are registered in the UK. But if there is an opportunity, we should definitely try.

      Facilitating patient involvement in research is already explicitly part of our mission statement. Maybe facilitating patient involvement in policy can become part of our core business as well, that would be awesome.
       
    13. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Prime example of citizens from other countries seeking medical help in the USA.

      Mick Jagger, Alex Trebek, and many more. Why?
       
    14. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I agree not so easy to replicate in other countries - but the fact that England is a relatively small (landmass) country and that there is a national healthcare system make it an ideal test case. The avenues to input seem a little more mapped out and accessible, perhaps even more organized, than the situation in the US. But once you get thru the system there, we will at least know what to look for in other countries. Actually, this could turn out to be a lot of fun!

      TC
      :)
       
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    15. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Apologies, I just realized I misread the phrase quoted above. I read it as - I do not know who to believe about this. So the first part of my message above may be puzzling.
       
    16. sakrt
      No Mood

      sakrt Member

      Location:
      Og.
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Specific issues
      • Informative Informative x 1
    17. CaffeineKing

      CaffeineKing Member

      Tinnitus Since:
      1981
      Cause of Tinnitus:
      Measles as child
      Hello everyone. This is a first on this forum for me, so while I do not wish to engage in any debate - this is a one-off post - I would like to comment on aspects of the previous pages (see quote), and to introduce myself as:

      (a) Someone with tinnitus for many, many years.

      (b) Part of the supervision team for this Masters by Research degree.

      I would like to start by stating that this slide is being taken out of context - and I know this as I was in the room. The quote (above) is referring to a series of research experiments in the 1940s-1950s. Namely that audiologists used to consider tinnitus to be a noise that worked in the same way as external noise. It does not. Tinnitus does not bear up well in comparison to external noises. If you would like to read more, please search for work of Fowler (1944) who compared tinnitus to pure tones played from a speaker. He postulated that since tinnitus was 'not as loud' as external tones, it's 'not that bad' and as such, people should take solace in that fact that it is not serious. The quote refers to the incorrect conclusions from his historical work.

      He was wrong. I know that. My student knows that.

      This was the point she was making verbally, while stood next to that slide. It's a faulty methodology that needed calling out. If we move the work of Miekle et al. (1984) - the next slide in the presentation - Miekle did something very similar to Fowler. She compared tinnitus to external pure tones again. Like Fowler, Miekle confirmed that the tinnitus sensation does not compare well with external noises, and 90% of her sample reported their tinnitus to be (falsely) equivalent to a soft external sound. But she also asked people how upsetting their tinnitus was and over 90% of her sample reported that their tinnitus was 'moderately' (34%) or 'severely' (57%) distressing.

      So if you compare tinnitus to an external noise (which you shouldn't as it doesn't work), you incorrectly deduce that tinnitus is quiet. But this 'quietness' bares no relation to the distress that tinnitus causes. So tinnitus loudness (under this faulty comparison with external pure tones) does not equal distress. That was the point being made.

      Please do not think that researchers believe tinnitus to be quiet. We do not. I do not. My student does not believe it is quiet. Mine is not quiet. Instead, all this slide refers to is that previously (1950-80s), people incorrectly followed that flawed line of logic. But tinnitus is much more potent than this, and we have (rightly) moved away from such thinking. I apologise if people were upset by the slide, but there were 40+ slides in this presentation and you need the whole thing - and the verbal input of the presenter - to appreciate the point she was striving to make.

      Again, I stress that tinnitus - as incorrectly measured by pure tone external noise - does not have a relationship with the distress caused by tinnitus. Objective pure tone measurement is a faulty and discredited measure. The example was used here purely as a conversational device to move the presentation into more modern and more valid territory - and onto more relevant research (It is always useful to start a presentation with a bit of background, and especially to consider mistakes made in the past).

      Finally, I would like to stress that in the current climate, funding for research is hard fought for. The findings of this study are novel, add to the understanding of tinnitus interventions (and why some do not work), and that funding only equated to (limited) travel expenses.

      Thank you for your time in reading this.
       
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    18. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Glad to hear this because I've definitely heard from other people that they're being taught in Germany tinnitus clinics that the worst tinnitus cases really are just 15 dB loud.

      My sincere apologies for spreading misinformation. After everything I've read about tinnitus, mindfulness, CBT and ideas such as "the type of tinnitus doesn't matter to the concept of habituation" I thought the presentation slides fell right into this way of thinking. I'm relieved to hear that this wasn't the case and genuinely sorry for jumping to false conclusions.
      Personally, I don't see (yet) that we've moved away much from it when it comes to the average tinnitus patients' experience with doctors, therapists or when it comes to media coverage of tinnitus. At least here in Germany, statements such as "how much you suffer from tinnitus and how much you perceive it is not decided in the ear but in your head" or "loudness isn't the determinating factor" are quite common and used to imply that loudness doesn't matter at all. But it seems like in the tinnitus research field, these things are finally changing, and I'm more than happy to see this.
       
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    19. Mathieulh
      Jaded

      Mathieulh Member Benefactor

      Location:
      Paris, France
      Tinnitus Since:
      05/24/2019
      Cause of Tinnitus:
      Chronic headphones use and acute noise induced trauma.
      The process of habituation is tied to the individual's brain physiology, and therefore individual dependent. This is why some people with mild tinnitus can't habituate while some people with severe tinnitus do. Does loudness play a role? I believe it does as increased loudness has a larger impact to the quality of life and leads to increased depression, which leads to a longer period during which the sound is processed through the amygdala (which blocks habituation), this is also why keeping a positive mindset remains an important factor to habituation, unfortunately habituation is a brain plasticity mechanism and is more tied to deregulation factors within one's brain than the type of tinnitus experienced by the sufferer.

      This is also why habituation, while helpful in alleviating symptoms in an affliction that currently has no cure, should not be the standard of care, and why a cure or proper treatment should be the focus of research, rather than palliative care of a psychological nature.

      Keep in mind that science through fMRI, has proven that the tinnitus sound is no less real than external sounds, if your auditory cortex tells your brain the sound exists, as far as the rest of your brain knows, it does and the impact of this/these sounds can be seen, not only such activity can be immediately detected through fMRI, but also over time as well through contrasted MRI as habituation performs physical, visible changes to your nucleus accumbens (this is how habituation works, and why it can't be rushed, because it is not a psychological state but one that is physiological in nature), it also changes your brain on a chemical level as, as odd and surprising as it seems, it increases the secretion of dopamine, something that, given the proper toolset, is measurable.

      This also means that people claiming how the sound is a "figment of your imagination" or "in your head" don't know what they are talking about and didn't do research.
       
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    20. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      I agree. It's just when people use the statement "the type of tinnitus doesn't matter to the concept of habituation" to imply that everyone can learn to tune out their tinnitus or that loudness doesn't matter in any case I disagree with it. For example, one German ENT wrote "how much you perceive your tinnitus is decided in your head", as in, your attitude towards your tinnitus decides whether you can tune it out or not. But I think we both would agree that this process of eventually being able to tune it out doesn't work for everyone. Really glad we finally have this study: Tinnitus Habituation Linked to Sensory Memory.
       
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    21. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      So... whatever happened with Samantha Baines?
       
    22. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      She's part of the "HEADLINE" session at the BTA Expo this year.

      https://www.tinnitus.org.uk/blog/headliners

      :rolleyes: I'm looking forward to her cracking jokes about tinnitus...
       
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    23. david c

      david c Member

      Tinnitus Since:
      01/2012
      That line up of "headliners" looks like the usual BTA thing of lecturing people about "you should carry on attending rock concerts and other noisy events and you'll be fine if you just buy some of our earplugs from the BTA shop". We know that bad advice pretty well by now.

      What will be interesting about the Tinnitus Expo will be to see whether BTA lives up to its promises about raising awareness and asking for feedback about the NICE draft tinnitus guideline. Their failure to consult either their own members or the wider tinnitus public about the feedback they gave on the "scope" of the guideline has now been exposed. They wouldn't try and get away with that twice, would they?
       
    24. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Well, seeing as how you and a few others were the only ones to even notice this or care, then I'd say the probability is high.
       
    25. BrStan@

      BrStan@ Member

      Location:
      London
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Acoustic trauma
      Please do not give any money to British Tinnitus Association. You don't need fundraising for selling maskers and giving advice that it will get better. I can do that for free.
       
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    26. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hi Autumnly, I hope you do not feel too badly about this. Keep in mind that the slide was taken out of context because Liz Mistry tweeted it out of context.

      It just goes to show to all of us that when you put something out there on social media you cannot assume that everyone seeing it will know the context. Let's hope the people at Leeds Trinity will strive to do better.

      Personally, I'm glad you were vigilant.

      The tinnitus community recognize and understand that tinnitus research is grossly underfunded.
      If BTA supported the study at a low level, then instead of saying the study was funded by BTA, it should have said 'study was partially supported by BTA" or 'made possible by a travel grant from BTA'. Saying the research was funded by BTA is like BTA giving an endorsement. Then again, maybe that was the intention.

      BTA have also funded research about Cortisol levels in tinnitus patients in the psychology department at Leeds Trinity. They have found a difference from what was normally expected. It's covered on BTA's website -

      The use of the Cortisol Awakening Response as a biomarker of distress in people with tinnitus

      and

      Exciting new research gives hope to tinnitus patients

      Perhaps @David can give us some insight into where BTA is going with these studies.

      TC
       
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    27. david c

      david c Member

      Tinnitus Since:
      01/2012
      I would be glad if the BTA stopped funding psychology studies full stop. Tinnitus is NOT a psychological condition. ME sufferers experienced exactly the same challenges - psychological studies seeking to class ME as a psychological condition. Studies in fact pretty much the same as this "Cortisol Awakening" one that claimed that a cure for ME was far less important than finding the "right sort" of ME sufferer who wasn't bothered by their condition that much and aiming to move other "bothersome" ME sufferers into the "right" group.

      ME sufferers weren't having any of it - they challenged the psychologists doing these studies and exposed the flawed data behind their research. The result - they are finally getting the biomedical research which will eventually pave the way for a cure for their condition. ME sufferers are having a NICE guideline drawn up for their condition at the moment and NICE has bent over backwards to make sure that they are involved - having a public meeting, an increased number of lay members on their committee and longer periods of consultation.

      All of that contrasts with tinnitus sufferers in the UK who have been kept in the dark about NICE's tinnitus guideline by the very people whose job it was (as a lay committee member) to make sure that they were aware of the guideline and that their views were taken into account - @David and the BTA.
       
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    28. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      LOL you know they won't m8.
       
    29. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      At some point I would love to explore and examine the case of the ME sufferers. Although I'm not in the UK, a physician once said to me that there were similarities between the lack of understanding experienced by ME patients and by tinnitus patients. I'd like to identify and understand the similarities in more detail as well as learn how the ME patients and their charities/non-profits are overcoming them, including in the US.

      However, I wouldn't be willing to do this until after the Treatment Reviews for the Tinnitus Hub website are completed.

      Best, TC
       
      • Like Like x 1
    30. david c

      david c Member

      Tinnitus Since:
      01/2012
      Absolutely @TuxedoCat - my post wasn't a demand for you to examine the case of ME sufferers. It was a criticism of the BTA's failure to fund biomedical research into tinnitus and only fund psychology studies, as well as their lack of consultation of their members in their feedback on NICE's tinnitus guideline.
       
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