More About the BTA and Tinnitus

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

    1. david c

      david c Member

      Tinnitus Since:
      01/2012
      Tinnitus is not a psychological condition.

      But the problem we have is that powerful people in the field of tinnitus like David Stockdale (head of the BTA) and Lawrence Mckenna (who has received most of its research funds), will do everything they can to ensure that it is classified as largely a psychological condition - with psycho-therapy treatments such as Mindfulness the most appropriate.

      Why? Because doing this provides massive commercial opportunities. Every Psychotherapy practice in the world wants their share of the tinnitus dollar/pound. The BTA clinical trials conducted by Lawrence Mckenna will help them get it. Let's not forgot that every penny of the money that the BTA spent on those trials was given in good faith by people who hoped that it would be research which would deliver a cure. And every penny they spent was money that was NOT being spent on things such as drug development and stem cell research (things the BTA hasn't spent anything on)

      But there is hope. Because we have an example of patients with a serious medical condition who were facing exactly this problem - the attempt to have their condition labelled a Psychological one - and who fought back against the medical establishment (and medical charities) who claimed they were trying to help them. The medical condition was ME/Chronic Fatigue Syndrome. And more information about this here:
      https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html

      Despite the debilitating nature of their condition ME sufferers challenged the apparently robust results of clincial trials in respected medical journal the Lancet (where Dr Mckenna also publishes) which claimed that Psychological treatments were most appropriate. They went to court to force the disclosure of the underlying data,which undermined the conclusions of the trials.

      Above all what the ME sufferers realized was that people who occupied the same positions as David Stockdale and Lawrence Mckenna in their world weren't their allies. They were actually making sure that the limited research funds they had weren't being invested in long-term research for a cure. And the result has been real research making real progress towards a cure for ME.

      Eventually we tinnitus sufferers realize that the BTA/ATA aren't our allies. They are the allies of the vested interests who have a long-term interest in preventing the development of a tinnitus cure. And when we do that, we too will finally see real progress in tinnitus research.
       
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    2. 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
      I disagree.
       
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    3. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Bronx N.Y.C
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      I would like to defend the BTA because they have Roland Schaette and he values real research very seriously.

      Through you are 100% right about psychomental therapies being put before treatment is a problem that needs to be addressed.

      The ATA and BTA both have people that care about research more then mindfulness and TRT.

      I agree to the fullest to focus more on treatment. I want to hear talk about Susan Shore's signal timing device, hypothesis about GABA increasement reducing tinnitus, clinical trials to restoring hearing via cochlear hair cell regeneration/cochlear ribbon synapse repair to reverse the plasticity of tinnitus, epilepsy drugs that show evidence of reducing tinnitus. The ATA and BTA can do many great things they just need to have serious people that care and want to fight the good fight!

      Let's try to reform instead of bashing them.
       
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    4. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      That's your right Glynis - and as you are friends with some of the important people at BTA I don't find that very surprising. I guess that I do find surprising the fact that an organisation such as the BTA which is supposed to be working towards a cure for tinnitus hasn't spent any money on research on drug development or stem cell research - the two areas most sufferers think a cure is likely to come from - but has spent a lot of money on Pyschotherapy research such as Dr Mckenna's.

      Above all though I find the example of ME sufferers inspiring. Faced with attempts to shut them up and silence their views they faced down a whole array of vested psychotherapy interests and a whole medical establishment. And if they can, so can tinnitus sufferers.
       
    5. 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
      The BTA do support research but also need to help people in the here and now to help sufferers with support and talking therapy, advice line, forum, shop, leaflets, books, support groups, conferences and more and awareness.

      Yes I have lovely friends in the BTA and I know each one alone would welcome a cure and together do all they can.

      They make a massive impact in the UK but they are only a small team of people in a small office but have great people working for them and involved in there work and it's unfair to criticise them like this.

      One day a cure might be found and money is greatly needed by research but help is needed now by so many just to get through the day.

      Tinnitus Talk and Tinnitus Hub do fantastic work and I bet not many people realise that Tinnitus Hub do a lot towards research also.

      love glynis
       
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    6. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      I think it's right and fair to question on what and why a charity (the BTA) is spending its research funds - and why they aren't spending money on other areas of research.

      Yes I agree.
       
    7. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @david c have you personally donated to the BTA?

      Have you personally donated towards the running of this site?

      Have you personally donated towards Danny's memorial fund?

      Have you donated in any way toward's tinnitus research?
       
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    8. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      I have talked with BTA and they surprised me with their helpfulness. They are doing a good job with small resources.
       
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    9. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Actually the answer to three of those questions Starthrower, is yes. But personally as I Brit I don't think we should go in for the current fashion of poor-shaming, that those who are not well off enough to donate significant sums of money shouldn't be allowed an opinion on how research funds for a condition they suffer are spent.

      All tinnitus sufferers rich and poor should be allowed that. If people of your opinion Starthrower had been able to disenfranchise the right to an opinion of ME sufferers because too many of them were unable to work and couldn't afford to donate to charities themselves, the ME sufferers wouldn't have been able to defeat the medical establishment and the psychotherapy vested interests.
       
    10. 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
      Money for Tinnitus Research is greatly needed to help find a cure or better help as this goes back thousands of years and still no cure.
      I do think Tinnitus Awareness and how it effects people needs more public awareness and in schools to protect hearing but most people don't know about Tinnitus or think it could happen to them.
      Research is more needed than ever .
      love glynis
       
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    11. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I think that is so true. I know that some school districts in my area have hearing education and some don't - and there's a difference in the number of children that have hearing/tinnitus problems. Memos to parents should also be sent.
       
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    12. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Alleluia!!!!
      This is what I have been saying all along, BTA and ATA are not here to help us!
      The least they could have done by now is to make sure that 90% of general population has at least heard word “tinnitus”.
      Unfortunately it’s the other way around!

      Wake up tinnitus community!!!! The cure is not coming from them!!!
       
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    13. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I would like to know what has BTA done about Danny’s passing?
      What have they done about yet another life lost?
      It’s a fair question since they will collect the money raised on his tragic ending and due to their incompetency!

      Also, I read your post, can’t find it now, in which it was clearly stated by someone: ATA is not interested in finding a cure!
       
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    14. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @david c trust me when I write that I understand your position more than I can explain. My apology if my words sounded like "poor shaming". That was not my intent at all. I get pissed off that those who are financially able do not donate to help the masses for whatever reasoning they may have.

      I do take the opinion that the Executive Director of the BTA is an honest person taking time to address your questions. @David is probably not employed by the BTA for a huge paycheck. A person taking on this position does so with the intent of making a small organization strong.

      I agree.

      Wasn't TRI organization created specifically for the purpose of tinnitus research funded at first by one man, Matteo De Nora? I wonder what projects TRI invests funds towards?


      This is very interesting.
       
    15. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      I don't classify tinnitus as a psychological problem. CBT does currently have the best efficacy for treating tinnitus, at a systematic review level. I don't believe stating that funding psychological approaches to managing tinnitus equates to stating tinnitus is a psychological condition. Dr McKenna has not received most of our research funds.

      We've spent money on basic science trials that MAY lead to drug development or better understanding of the unerlying mechanisms of tinnitus. We struggle to invest in anything further 'upstream' than basic science as this is outside of our ability to fund, it gets expensive and needs major investment pretty quickly. We hope the basic science we fund can be used or inspire pharma and others to run with it e.g.;
      https://www.tinnitus.org.uk/identifying-and-targeting-possible-tinnitus-genes
      We don't get many applications like this though.

      Dissappointed to hear you feel like that. Our Trustees (my bosses) are by and large people living with tinnitus and want the same as anyone else living with tinnitus. I'm not sure why you think we wouldn't want a cure? I'd love to close the BTA becuase there was a cure and it was no longer needed. Why wouldn't I?! Likewise why would any clinician or researcher not want to find the cure? They'd be set up for life. There is no big conspiracy to stop a cure or to not work towards one.

      What does exist is a lot of major challenges and hurdles that need to be overcome - not least an adequate measure of tinnitus. These challenges have been idenfitied through recent pharma trials and we're working to put a paper together to raise awareness of this with the rest of the tinnitus research community, as there is a disconnect between the research happening (not just ATA/BTA funded research) and what pharma needs to move onto the next level (in my opinion). I think there's a real opportunity to drive up the quality and relevance of tinnitus research and am working to do that.

      Apologies for any typos/erroes - written in haste in between meetings.
       
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    16. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Well said.

      @david c, I’m going to be as blunt as possible here: in my opinion you are part of the problem. For some reason, when it comes to the tinnitus community, there is a chronic lack of engagement and an overwhelming urge to look for problems rather than to contribute towards solutions. Let’s be hypothetical and say the BTA and ATA no longer exist because of our actions: does this enhance our cause? Will a cure come any quicker?

      I’m not sure what you’re trying to achieve because as far as I can tell the BTA are on our side and in-house fighting helps no one. Especially tinnitus sufferers.

      I don’t think Starthrower was poor-shaming at all. Even if some of you find yourselves on low income, there is still a lot that can be achieved by doing your own fundraising, or by donating £1-£5. From my experience, it’s next to impossible to engage the majority of sufferers to help our cause. No one is interested in doing real work to help and many would rather spend their time complaining on here. That is the unfortunate fact of the tinnitus community; it works against itself. I’ve engaged a researcher and various other tinnitus associated organisations since Danny’s fund was set up. But, to be honest, the overall vibe I’ve received from the community has been one of immense hardship where it’s quite obvious that not many are willing to help themselves. There’s only so much we can do individually and if the majority continue to remain inactive (or argumentative) on the sidelines, then not much will change, unfortunately.

      And David C, as for you answering yes to all three of Starthrowers questions, are you sure? There isn’t a donation from anyone named David C, and I also noticed that you’re not a benefactor either (and didn’t contribute towards the TT fundraiser). If you used a different name then I sincerely apologise, but something doesn’t quite add up.

      My life was changed considerably by this condition which is why I wanted to try and help change things for future sufferers (and to try and help current sufferers). It’s easy to criticise, and yet, it's so much more effective, and constructive, to engage in ways that moves the cause forwards.
       
      Last edited: Aug 22, 2018
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    17. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      That's interesting because it is exactly what the sufferers of ME/Chronic Fatigue Syndrome were told.
      More about that here:

      https://www.meassociation.org.uk/20...al-scandals-of-21st-century-20-february-2018/

      ME/Chronic Fatigue Syndrome Sufferers were told that severe sufferers from the condition were most likely suffering most because of their negative way of thinking. Exactly the same as Laurence Mckenna's most-recent BTA funded study which concludes that: "Negative thinking appears to be associated with more problematic tinnitus." ie people with really bad tinnitus its your fault for your negative mindset (which a nice psychotherapist will be able to improve with some CBT at a price).

      Sufferers with ME/Chronic Fatigue Syndrome were told that cognitive behavioural therapy (CBT) was an "effective form of treatment."

      Sufferers from ME/Chronic Fatigue Syndrome were told that they had to accept these conclusions because they were the result of extensive clinical trials published in the highly reputable journal The Lancet.

      Trouble was: what ME/Chronic Fatigue Syndrome sufferers were told was all lies.

      "After a long legal battle, unpublished data from the trial was released and, when independently analysed, it showed no difference between the different treatments being tested and that reported recovery rates had been grossly inflated."

      ME Sufferers had to fight the psychotherapy vested interests every step of the way to get to the truth. They had to go to court to get the real data revealed. It will probably be quite a while before we can force legal disclosure of the underlying data in Laurence Mckenna's clinical trials. But I wouldn't doubt for a moment that despite being told it is all "Highly reputable" the real data would be deeply dodgy.

      If you look at the make-up of the BTA's trustees and medical board taken together the majority of them make money out of tinnitus. (I'll only mention in passing the BTA Board chair who got a nice holiday to Australia once because he trialled an audiology device on the other side of the world)).

      And therein lies the problem. You have a major conflict of interest in your organisation the BTA between tinnitus sufferers and tinnitus-income earners. And it's the tinnitus income-earners who make the majority of the decisions.
       
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    18. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      The question still remains: what do we gain by criticising the BTA and ATA? That’s what I don’t understand. You can make arguments against some of their decisions and that’s true of any organisation. However, all mid to large sized charities pay salaries, that’s just a fact of life and fundraising. The salaries in the third sector aren’t anywhere near as attractive as positions in companies that are for profit, though, so individuals that are involved with charity work usually take a pay cut to do so. Other charities are no different.

      My next point is that what they do doesn’t effect what any of you can achieve in any shape or form. Nothing is stopping you from setting up your own charities, or foundations, and getting proactive if you feel there are better ways of reaching success. There is far too much preoccupation with these organisations whilst absolutely NOTHING is being done by the detractors. It’s a depressing state of affairs that a community can be this apathetic.

      It’s fine to disagree, but then you have to all seriously ask yourselves what have you done to raise awareness and to help with research? This obsession with other tinnitus charities only sends us backwards not forwards.
       
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    19. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      So my main argument is that the research that the BTA is funding is not only NOT helping tinnitus sufferers .. it is actually hindering the progress of tinnitus research by falsely focusing on psychological treatments. I suggest you read some of my other posts to understand why.

      I think you'll find that Starthrower asked four questions and I said yes to three of them. Try counting next time.

      Yes I did. Waiting for that apology.

      So I think you'll find that yes, many of the people on tinnitus talk are suffering immense hardship - highly intrusive tinnitus does that too you and can severely impact on your work and the rest of your life.

      And Ed, you sound highly patronising and just plain wrong when you said that "not many are willing to help themselves". Actually they are doing the very best they can in really difficult circumstances. To "be blunt "Ed, you sound just like those researchers who told ME/Chronic Fatigue Syndrome sufferers that really they just needed to make more of an effort and they would get better. That was all bu***hit" and what you are saying is too.
       
    20. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Exactly, those are the three I’m talking about?

      Not patronising at all, but fact. When less then 0.01% donate (when every option is given to donate £1) and then going by the feedback, then absolutely yes, the majority do not want to help themselves. I’ve bent over backwards to try and engage the tinnitus crowd on multiple platforms for hours/weeks, including paid ads, and most can’t even be bothered to like or share it let alone donate anything.

      It’s not good enough. If you all want to continue complaining on here then by all means continue but you aren’t contributing anything of value by obsessing over the BTA. Do something of value by being proactive.
       
    21. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      So you said "all three of her questions" but she actually asked four questions and I said yes to three of those. I'm still not sure which of my answers you are disputing but am still waiting for that apology...


      So who did you say was complaining all the time Ed?

      I've made clear that the argument I have is with the research the BTA is choosing to fund and the evidence they are using to justify it. That's what this thread is about and as you don't appear to have very much to say about that Ed I suggest you go on complaining about tinnitus sufferers and their ingratitude on another thread instead Ed.
       
    22. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      From what I can figure out this is contesting the results of a single trial. There's lots of trials looking at CBT in tinnitus from different groups. So think the sort of misreporting data is less likely to have happened.

      We have 9 trustees. 1 is an ENT, 1 a Hearing therapist, both working in the NHS. The ENT does some private work. The other 7 have no financial interest. They all volunteer their time to be trustees of the BTA.
      https://www.tinnitus.org.uk/Pages/FAQs/Category/trustees

      Our Professional Advisor's Committee (10 members) largely work within universities or the NHS. All donate their time to the BTA. Whatever way I put it, I think you'd view it as 'making money out of tinnitus.' I'm not sure how we'd have the professional input we need to operate successfully without this?


      Our Trustees are responsible for the strategic planning and direction of the BTA. They are unpaid and by and large people living with tinnitus.

      Not sure I'll ever convince you @david c that the BTA has the tinnitus community's best interests at heart, hope I succeed someday, in the meantime, there's other organisations to choose from who support tinnitus research. Choose one that better fits with your viewpoint. I don't care where tinnitus research funding goes to, or how it gets to he researchers, so long as there's increased investment and we get better ways to manage it and ultimately a cure.
       
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    23. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I said something doesn’t add up meaning you can’t answer three of those questions without being involved with either Danny’s fund or TT. I noticed you haven’t answered and have rather deflected the question instead.

      If you tried fundraising yourself you’d realise, in a heartbeat, that everything I’ve said is true. It’s insanely hard to engage the tinnitus community in a meaningful way. Stop obsessing over other charities and make a contribution in your own, personal, way. Then you can have no qualms about anything.
       
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    24. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Bronx N.Y.C
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      upload_2018-8-22_13-32-25.png

      2.7 billion on research or CBT, TRT Jastreboff cycle?
       
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    25. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
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    26. 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
      @David,
      Thank you for spending time on Tinnitus Talk and answering questions and putting one or two people right about the BTA, keep up your great work.

      I have known most of the BTA team for a long time and am still in touch with them.

      I was on the phone with you today.

      See you soon,
      love glynis
       
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    27. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Actually there was more than one trial for ME and the main trial was a large one - much bigger than the small CBT trials done for tinnitus. But the main reason there is a similarity is the motivation. The Lancet 2011 study was done to monetise ME/Chronic Fatigue Syndrome for the Psychotherapy professions. The BTA studies are done to monetise tinnitus for the Psychotherapy professions. In both cases the aim was to ensure a new source of profits for the Psychotherapy professions.

      And David Stockdale: You claim never even to have thought of asking Laurence Mckenna whether he personally financially benefits from this. Yet a quick Google will show Dr Mckenna has an extensive and profitable private Harley street practice from TRT/CBT treatments. So before the BTA give Dr Mckenna yet more research money maybe they should start asking him about potential conflicts of interest.


      But it's far more than just me you need to convince Mr Stockdale - if you just look at this thread and others there is widespread scepticism about whether the BTA (and the ATA for that matter) have the tinnitus community's best interests at heart when it comes to sponsoring research.

      There's widespread incredulity about why - again and again- CBT/Mindfulness trials are given money for the same trials rather than pursuing something different. I gave an example of a research study I'd like to see earlier - about whether Clonazepam can reduce tinnitus noise for those with chronic, severe tinnitus. As clonazepam is already a well-known drug this would be much less expensive than trialling a completely new medication. At the moment there have been some small foreign clinical trials which indicate that clonazepam can reduce tinnitus in some cases (https://www.ncbi.nlm.nih.gov/pubmed/22626945) but no UK studies- which means that NICE haven't approved, so GPs aren't normally allowed to prescribe it.

      A UK trial could change that and help save lives lost in suicide of those suffering severe tinnitus. But the BTA isn't interested - saying that no researcher has come forward with a proposal - a disingenuous explanation as if the BTA indicated it was interested in sponsoring such a trial there would be plenty of researchers willing to participate. Maybe when you start being more proactive about research more tinnitus sufferers would start to have faith that you had their interests at heart.
       
    28. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      It’s a shame that people have such a negative view of others who are volunteering their time to help, and who are also professionals. I know some are on a salary but that’s the only way you can get anything done, and let’s be practical about this, the money the BTA receives is tiny compared to other charities. In fact, no tinnitus charity made the top 1000 in the U.K.

      My issue is that nothing would be done, at all, without the work of tinnitus charities. It’s one thing to constantly attack them (when they are amongst the minority of people who are, at least, doing something), but another thing entirely when most of those doing the criticising aren’t contributing anything themselves. It’s totally hypocritical and I’m just calling people out on it.

      There’s nothing stopping anyone else (out of the millions that have tinnitus) from doing all the things they want to see the BTA do. I don’t think some of you realise how difficult it is to raise the kinds of funds required for substantive research. Especially when people with tinnitus don’t generally donate to their own cause. What else can be done? Nobody can work miracles. The money has to come from us, the sufferers. We have the numbers to raise huge amounts of money, but people aren’t interested and this has been proved time and time again. So, instead of blaming the BTA and using them as a scapegoat, take a long hard look at yourselves in the mirror and ask yourselves why you don’t want to help out.

      Obviously, this doesn’t apply to the people that do, but to the 99.99% who don’t do anything, but still want the world to move for them.
       
    29. 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
      One person alone can make a change and Tinnitus Talk, Tinnitus Hub, ATA, BTA all make a big difference in supporting members, awareness, fundraising, information, medical updates, advice, support groups, Quiet magazine, leaflets, forums, support groups, events that cost money to help sufferers of tinnitus to get through each day.

      Funding for research in any country will one day help find a cure.

      Daniel's fund is one example as donations have come from members worldwide so whomever gets the funds it is still for the same goal and we all can make a massive difference, donating, fundraising etc.

      I don't think I can run like @David and his team but that is a great example along with our Daniel's fund.

      love glynis
       
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    30. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      They aren't. All of the studies the BTA have funded would be into treatments viable within the NHS. The trials are conducted within NHS sites. The mindfulness study we have funded shows promise, other studies (by other researchers and different centres) replicating the results would be needed to provide efficacy.

      Quite an old study. Makes me wonder why it hasn't been taken further. I'll do some digging and see what I can find out and report back. Again though drugs trials, even into existing drugs are beyond our ability to fund.
       
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