More About the BTA and Tinnitus

Discussion in 'Awareness & Fundraising' started by david c, Aug 21, 2018.

    1. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
      I'm not a regular on this forum, as I find it a bit too international & busy, but I've read through this thread and become increasingly annoyed at your intransigent viewpoint and this quote you've taken to tacking on to the end of all your posts. Most rational people, which includes everyone I've ever had any contact with at the BTA, agreed that more research is needed. Research, particularly pharmaceutical research, costs a lot of money. Where is this funding going to come from o wise one?
       
    2. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      One of the misapprehensions at the moment is that there is little or no funding going on in tinnitus research. There is quite a lot of money being spent on tinnitus research by institutions such as the BTA at the moment - but it's just not being spent on the right things - several hundreds of thousands being spent on more research on hearing aids and tinnitus (where there's been a lot of research already) and yet more CBT type studies to add to the 200 CBT for tinnitus clinical trials which have happened recently. In contrast pretty much no biomedical research. No this type of research isn't cheap but if money keeps going on the wrong type of research then the right type will stay unfunded.
       
    3. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
      Don't believe everything you read - particularly when the website in question asks for your guess for the turnover of an organisation to make their figures more accurate. :joyful:

      Companies House filings indicate the BTA's income for the y/e March '18 was just under £750k. They are a small organisation with very little funding who punch far, far above their weight in terms of their standing and reputation.
      upload_2018-11-23_16-14-50.png

      Those on this thread who are questioning their motives and accusing them of everything short of witchcraft should start researching facts instead of wild conspiracy theories.
       
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    4. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      By "Flights of fancy" you mean biomedical research into tinnitus.

      I've not said that the BTA shouldn't have corporate sponsors - simply that one unfortunate side-effect is that their research and campaigns mainly suit the interests of these sponsors rather than the research which needs to be happening.
       
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    5. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Oh dear, may I suggest the simple solution of activating the ignore button so you are free from the burden of having to read any more of my posts if they offend you oh so much...
       
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    6. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
      There's little to be gained in repeatedly going to these seminars / information days, but if someone is struggling in the early days of their problems with tinnitus, which can be utterly terrifying in the 'fight or flight' mode, surely you would understand why they would seek out information? Just like you did with the video and your DVD's. Hell, I sought out information in my early throes and found your essay!

      The information days for the public perform an invaluable service in demystifying and offering some small crumbs of comfort to sufferers that their life isn't necessarily over.
       
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    7. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      This debate has raged on for ages. I posted their official figures about a year ago, but nobody took any notice. Most would rather believe they are rolling in millions and are against the tinnitus community; that’s just the way it is.

      They have a support system where people can call in and talk, one to one, with another person about their tinnitus. This can be invaluable to some. Research is hugely expensive, so more donations would really help in this respect, but not many people do and this has always been a problem. It is often said that it can require between $1B and $2B to develop new pharmaceutical drugs.

      I’m not sure what the tinnitus community expect sometimes to be honest. It’s a difficult situation with no clearly defined answers. However, it’s much easier to shoot others down than it is to do something productive. A scapegoat is sometimes required to fill the void of apathy.
       
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    8. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I was speaking for myself when I said I would not attend a tinnitus seminar or conference. Those that wish to do so I would not try and discourage them. When I was a newbie 22 years ago, I didn't have access to the Internet and when I did, information about tinnitus was nothing like it is now. I learned the best information about this condition is sought from people that have experience with it. This is not to say the medical profession don't have a role to play in helping people cope with this condition when it is troublesome or severe. Indeed they do. Medication, counselling and sound therapy devices can go a long way in helping people to have a better quality of life.

      That is all I have to say on this matter and will not be commenting further.
      Michael
       
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    9. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Oh gosh I don't think they are the enemy at all. Their phone line for one is great. I was surprised at the information in some of their information leaflets though which seemed questionable. It is quite understandable that a charity should have corporate funding, but it's not wrong to discuss on a forum whether it influences research priorities. This is quite the issue with health charities. Most do take corporate funding, quite understandably, but a few, like the mental health charity Mind, refuse to do so, so they can be a neutral voice for patients. I'm glad the BTA exist though.
       
    10. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Ideally the NIHR, in the UK. Drug companies spend more on marketing than original biomedical research, which they increasingly outsource to universities, according to some sources - https://sites.hks.harvard.edu/m-rcbg/fellows/T_Christian_Study_Group/Session 3/Truth_about_Drug_Companies.pdf -- I hope there is still some original research into the brain mechanisms behind tinnitus being conducted somewhere by a large pharmaceutical company - please point me to any if you know of it.
       
    11. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @David How many individuals belong to the BTA? Just curious. Thanks, TC
       
    12. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      As far as I’m aware, there are 7 trustees, 18 staff, and 10 on the professional advisers committee.
       
    13. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
      How can it even be a debate? You can't get more 'official' than Companies House. The only way to be any more definitive about their finances is to rock up in Sheffield and demand access to their piggy bank.

      Unless they have millions stashed under the mattress to keep effective tinnitus treatments under wraps.....the bounders!
       
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    14. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
      You haven't said they shouldn't have corporate sponsors, but you have implied that those sponsors wield influence over what the BTA does. The top level of corporate sponsorship costs £495. Do you honestly believe that any organisation is going to spend that amount of money and then sit back and think 'we've got them in our pocket'?!?
      It cost nearly that much to buy the kit for my boy's U10 team and the local travel agents who paid for it don't get to pick who plays up front. Get a grip lad.
       
    15. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @David @Ed209
      I meant members.

      How many individual members, as opposed to corporate members, does BTA have?

      Thanks,TC
       
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    16. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      That made me laugh, but this is how some people think. David C has been attacking the BTA for ages - when ideally - he could have spent his time helping, or doing something productive instead. If they disappeared overnight, does everyone think we’d suddenly find a treatment, or be in a better place to help ourselves? Their support groups and phone lines help people who are at their wits’ end and need someone to talk to. I don’t agree with everything the BTA has done, but then I don’t agree with everything my friends and family do either. That’s just life. However, I believe they are on the right path, and it’s not as though they are a drain on society or anything as they are self-funded, so I say good luck to them.

      One of the biggest problems when it comes to tinnitus is the lack of engagement from the community. A lot more could be done but people generally choose not to.
       
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    17. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      The so-called treatment of tinnitus is in the hands of audiologists and psychologists. It's been delegated down to these professionals by the ENTs and others in the medical profession. This would have happened without BTA or ATA.

      By funding research for psychological treatments are you saying that BTA has perpetuated this paradigm? By comparison ATA has not funded studies of psychological treatments and there has been no paradigm shift in the US.

      What other purpose did funding studies of psychological treatments have? Did adding supportive evidence enable the availability of these treatment on the NHS?

      TC
       
    18. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      I'm delighted that this particular thread has focused attention on what research the BTA is funding and more importantly what research it isn't funding. Like many others when I first donated money to the BTA I had assumed that this was going towards biomedical research towards a cure - similar to the work done by Cancer and MS charities for these conditions.

      I subsequently discovered that the BTA isn't spending money on Biomedical research but it is choosing to spend money on psychological approaches to tinnitus. Fair enough if you think the limited amount of funds available for tinnitus research should be spent on more of these. Personally, I don't. By the BTA's own calculation there have been 200 recent clinical studies of CBT for tinnitus. We don't need to keep repeating this research again and again - what we do need is good quality biomedical research.

      I've also spent a lot of time challenging the downgrading of the impact of tinnitus on people's lives by the BTA and NHS. The BTA currently asserts that tinnitus "has no affect at all on the lives of the majority of people with tinnitus". They haven't produced any evidence at all for this claim so far. I hope they will now remove it from their website.

      I'm delighted that other Tinnitus Talk forum members are following my example and challenging many of the BTA's dubious and unhelpful assertions about tinnitus. There have been excellent posts recently about the BTA's very poor leaflet about tinnitus and drugs, which is full of sweeping statements not backed up by evidence.

      Of course my criticising the BTA has led to some unpleasant personal attacks on me - ironically by those who have been all too happy to criticise the ATA for much the same failings as the BTA (I should stress I absolutely do not include @TuxedoCat among this number). I just try to ignore these as they say so much more about the person making the personal attacks than they do about me.
       
    19. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      You are 110% right in everything you’ve said so far.

      There’s so much talk about awareness and us doing our bit but the biggest damage is coming from those in position of power, the way they see tinnitus is what counts (unfortunately)!

      I find it contradictory to fight to change things when those whose word matters are continually working against us!

      No wonder people with tinnitus have no desire to fight!
       
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    20. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
      I got an e-mail from the BTA just today that confirmed this - maybe they're not so insular after all. They claim / advise that they have 3155 members, presumably at the time of writing. I hadn't realised before receiving this e-mail that the £15pa membership fee is just intended as a contribution to the running costs of the membership scheme rather than any broader donation to their activities. This does make sense in hindsight - I had thought that £15 a year was extremely low. As I told the guy from the BTA, I think I paid the same for my Beano membership when I was 10.

      The membership figure seems very low, when you consider the estimated 6 million people in the UK who have tinnitus. What you take from that will I guess depend on your viewpoint in this debate. They're either struggling to attract members because people think they're a waste of space or most people aren't that bothered by their tinnitus. Personally, I'm inclined towards the latter. Having tinnitus is very different from suffering from tinnitus.
       
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    21. ruud1boy

      ruud1boy Member Benefactor

      Location:
      Huddersfield, UK
      Tinnitus Since:
      c.2006
      Cause of Tinnitus:
      An enthusiastic youth
      How much 'good quality biomedical research' do you think they're going to get done on total annual income of c.£750k pa? That's total income, before taking into account any running costs whatsoever. Personally I don't think they should be funding any research at all as they just don't have the finances to have any hope of any effective outcomes. They should be focussing on support for sufferers, prevention work to stop more poor buggers joining our miserable cohort and lobbying for increased funding / research from organisations who have the means to do something about it.

      Do you have any evidence to the contrary? Or is this just an assumption on your part? I have no reason to doubt the BTA's assertion, in fact it feels about right to me based on my experience. The figures I've seen, from various sources, not just the BTA, suggest around 10% of the population have T to some degree or another and that around 10% of those experience it to an extent that it causes problems. So it follows that c.90% don't have any difficulties with it. I started with it in my early 30's and had it for c.10yrs without it causing any problems at all - any background noise masked it effectively. In all that time, I was never aware of anyone else who had the condition, let alone suffered with it. Since mine got worse, I've found a few people I know (5 if we're counting) that have the condition - including my own father! - but because it doesn't cause them any problems, it never gets mentioned.
      The NHS page on T states (if memory serves) 'severe cases can be extremely distressing', which is hardly downplaying it.

      What's the view like from up there on the moral high ground? I haven't seen any unpleasant personal attacks on you, at least not in this thread - just people disagreeing with you and debating the points at issue. That's what forums are for aren't they?
       
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    22. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      So the BTA have made a number of grants of tens of thousands and several hundred thousand pounds to fund repetitive management therapies research. What I think they should do instead is set up a tinnitus biomedical research fund together with Action on Hearing Loss and if possible working in conjunction with other European based tinnitus research groups. Then invest the research money they have into that.

      They may not be able to finance a research study every year or even every other year, but the research which would be funded would be far more valuable than another study on CBT and tinnitus to add to the 200 hundred other ones which have already been done.

      So this is to do with an assertion on the BTA website that "the majority of people with tinnitus find that it doesn't affect their lives at all."
      I've asked the BTA what the hard evidence is for this assertion. To date they haven't been able to produce any. I am not the one making an assumption here - the BTA is.

      I can assure you that I have been called a large number of unpleasant adjectives by a very small number of members of Tinnitus Talk - well two members to be exact. This has been done not only in other threads on this forum (not this one in fact) but also in personal messages to other Tinnitus Talk members. It's sad that these two particular members are so keen to engage in smear tactics rather than accepting that people can honestly and sincerely disagree about these issues.
       
    23. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
    24. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      An update on this. Challenged by me to produce evidence to support their claim that "tinnitus has no affect at all on the majority of people with tinnitus" the BTA have decided to remove the sentence completely from their website.

      Over the last decade the main tinnitus charities in the UK have downplayed the impact of tinnitus on people's lives. The result has been a lack of recognition for the condition and a lack of funding for a cure.

      I'm glad that tinnitus sufferers are now becoming to challenge both the charities' claims and their strategy. The removal of this sentence by the BTA marks one small step of progress to finally achieving recognition for this condition.
       
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    25. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      One of the main themes of this thread has been the success of sufferers of ME/Chronic Fatigue Syndrome in achieving groundbreaking biomedical research into their condition, once they were able to prevent those who were trying to waste research money being donated for their condition on repetitive management strategies/CBT research.

      Further proof of that success is shown today in news reports about a major medical breakthrough into understanding their condition:
      https://www.bbc.co.uk/news/health-46570494

      Sadly tinnitus research in the UK has achieved nothing comparable recently. But let's learn from success. Stop the wasting of precious research funds by the BTA and AOHL on the 201st study of CBT for tinnitus. Urge the tinnitus charities in the UK to work together to create a joint research fund specifically for biomedical research into tinnitus. And don't donate to the research funds of either organisation while they refuse to do this.

      The idea that MCBT/CBT is a treatment for tinnitus is dangerous and unhelpful. What tinnitus sufferers in the UK really need is not talking therapy but well-funded, and properly conducted, biomedical research.
       
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    26. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      With the new year beginning it's really encouraging to see the BTA starting to be held to account for its research funding decisions on its social media pages. People like myself who had given to the BTA for research in the past, assuming - wrongly - that it was going to be spent on biomedical research geared towards a cure are beginning to ask why this isn't happening and whether the research it is funding is in any way innovative or just a duplicate of previous "management strategies" research.

      Remember that we are not talking about very small sums either - the BTA has been spending six figure sums every year - but none of it going on the biomedical research we need. I'm glad that this thread has shone a much-needed light on the BTA's research funding decisions and raised awareness amongst tinnitus sufferers.

      The idea that MCBT/CBT is a treatment for tinnitus is dangerous and unhelpful. What tinnitus sufferers in the UK really need is not talking therapy but well-funded, and properly conducted, biomedical research.
       
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    27. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      I fully agree. I have a feeling though that criticizing them like we do will just offend them and make them double down on their hard headedness.
       
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    28. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Another advertisement for a tinnitus "management strategies" project on the BTA's social media a couple of days ago. Yet the reaction is probably not what the BTA is expecting. One Facebook user writes that:

      "I don't see the point of all these studies. Nothing actually changes. We're all still suffering and will continue to suffer until someone takes it seriously enough to research effective remedies"

      Their post gets a large number of likes. Another Facebook user comments:

      "What is the point? We need trials of drugs or devices which will actually help us."

      The climate is changing. The BTA's members are increasingly aware that over the last few years hundreds of thousands of pounds which they could have spent on biomedical research for a cure was wasted on duplicating management strategies research. They are no longer willing to passively accept what the BTA tells them. I'm really delighted by this change and the fact that this thread (now with over 12 thousand views) has played a small but significant role in raising awareness of the BTA's funding decisions.

      Ultimately I hope that this change in awareness and attitudes will lead to the BTA finally starting to invest in biomedical research.
       
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    29. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I agree and well said @david c.



      Thank you
      Michael
       
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    30. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      I agree, it's very nice to see people are starting to question the BTA (and ATA). They have been able to maintain the status quo for decades now. It's time for a change. I'm afraid it will take some time to truly change their shops.

      David Baguley is the President of the BTA. One of his recent publications include:

      I believe there are many people among the Board/Trustees of the BTA who are all about psychological interventions for tinnitus. New Trustees need to join the BTA who have more interests in biomedical research.

      Would you be able to join their board of trustees @david c?
       
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