To make it absolutely clear:You just wanted the criticism of the BTA's research approach gone so you deleted the post- and hoped that I hadn't saved the post I had written elsewhere.
To make it absolutely clear:
If we didn't allow criticism of BTA, this new thread of yours would have been deleted quickly after you posted it.
If we felt your post wasn't allowed in a new thread, we would have explicitly stated so.
Therefore, people can witness with their own eyes such critique is allowed.
To an extent of course. Defamatory content is another matter.
Thankfully, there is freedom of choice; if you feel unsatisfied with our service, there are other venues to chat about tinnitus. But we of course hope you will first, for example, have a Skype call with us, so we can better learn about you and your wishes/needs/concerns and hopefully improve. Feel free to start a PM with @Steve, @Markku, @glynis.
The BTA head David Stockdale still hasn't explained why he did not know that there was a clear conflict of interest in the BTA funding research by Laurence Mckenna to validate Mindfulness and CBT - when Dr Mckenna had a lucrative private practice in this area.
It's hard to follow your logic. What does you saving your post elsewhere matter? Couldn't you have written it from scratch again, anyway? We can assure you this kind of thinking never crossed our minds.So to be absolutely clear - when you decided you didn't want my post in the BTA Expo thread - why did you not give me the opportunity to re-post it in another thread - you simply deleted it hoping that I hadn't saved it elsewhere?
@david c,
I can see where you're coming from after finding out where the BTA research funds go and you don't want it all going on CBT or Mindfulness (Laurence McKenna).
I am sure @David, when he has time, could give you more depth into that as they have nothing to hide.
It would be nice though to show them some respect for everything they do.
They are really nice people whom go above and beyond their jobs in support of tinnitus.
love glynis
Yes that's right - I should have just written a 38 line post from scratch again anyway.It's hard to follow your logic. What does you saving your post elsewhere matter? Couldn't you have written it from scratch again, anyway?
Yes you could have done. But that would obviously have been much too enabling of free speech.Obviously we could have specifically told you "feel welcome to post it in a new thread." We admit, we weren't so specific.
But not too busy to have deleted my post where I originally posted it because you didn't like its contents.We're quite busy preparing for the Expo
"The difference between people who have tinnitus and suffer with it and people who do not suffer is not related to the type of tinnitus they have." - source
Because of this statement. It's ridiculous and insulting. Loudness, intrusiveness and stability matter immensely.
And there was nothing Glynis I have said to David Stockdale which was remotely disrespectful.
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.
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.
Tinnitus associations are meant to represent all of us, across the board, not just the interests of some. And that is what they're trying to do, with very limited resources I might add.
@david c How on earth can one person be so powerful as to stop any research efforts because that person does not want a cure that will take away money for "commerical" gains?
You seem to have completely misunderstood the point
I don't believe Dr McKenna working outside of the NHS was at the time or is now a conflict of interest.
The BTA has 16 employees and 9 Trustees. None of them represent the groups above. We have a Professional Advisors Committee (10 members), which advises the staff and Trustees but is arms length, Trustees do not have to go with or agree with the PAC's guidance and often don't. 1 of the PAC is a psychologist (working in the NHS and at a University), who may fit your definition. How that 1 person would wield sufficient power and influence over the other 34 I am unclear? I am unsure how else you think we represent this group.The BTA isn't "one person". It represents a powerful group of vested interests. These include the audiology industry - producers of various types of masking devices and "neuromodulation" devices, and various forms of "tinnitus retraining therapies".
These vested interests also include Mindfulness gurus/CBT Therapists and other types of Psychotherapy for tinnitus groups.
I'm not sure it is.Collectively these groups earn millions of pounds each year from tinnitus - tinnitus is big business.
We've already discussed that the BTA doesn't fund drug or stem cell research as it is out of our reach financially. I've already given an example of the type of research we do undertake that could then be used for drug development later down the line.So they make sure that any research money doesn't go towards developing a cure. As the most likely route to a cure is through either stem cell research or drug development - these groups make sure that the BTA spends NO money on either of these things.
David Stockdale has actually confirmed that this is the case: The BTA spends no research money on drug development or on stem cell research.
We've already discussed this. We did no COI on Dr McKenna, as our contract was with the University College London Hospitals NHS Foundation Trust. We don't undertake a research contract with individuals as this would be too risky to the research being incomplete, etc. We don't employ the researchers directly, it is up to the contracting body to ensure that the research is carried out to the right ethical standards (via their ethics committee) and to ensure their contact of employment is enforced with their employees.Let's have full disclosure and see the information from the conflict of interest forms Dr Mckenna would have completed prior to his gaining research funding.
The BTA has 16 employees and 9 Trustees. None of them represent the groups above. We have a Professional Advisors Committee (10 members), which advises the staff and Trustees but is arms length, Trustees do not have to go with or agree with the PAC's guidance and often don't. 1 of the PAC is a psychologist (working in the NHS and at a University), who may fit your definition. How that 1 person would wield sufficient power and influence over the other 34 I am unclear? I am unsure how else you think we represent this group.
I'm not sure it is.
NHS first
We estimate tinnitus costs the NHS £750 million. If you see people within the NHS 'profiting' from tinnitus. If tinnitus services were no longer available on the NHS (which the BTA hopes will never happen), these people would still be in full employment, waiting lists for ENT, Audiology and, yes, psychology would still be full, they'd still be actively employed. So whilst they earn a salary within the NHS, they would still be gainfully employed without tinnitus patients.
In the Private/independent sector
We don't know how much tinnitus is worth to this sector in the UK. My belief is that The Tinnitus Clinic is the biggest player - certainly in solely offering tinnitus services. If you look at their abridged accounts via Companies House, they certainly don't appear to be a multi-million pound business; https://bit.ly/2MOjzf6
So taking that - wouldn't they want better ways to manage tinnitus that they could sell to more people, for more money? So therefore want better ways to manage tinnitus and a cure they could sell?
We've already discussed that the BTA doesn't fund drug or stem cell research as it is out of our reach financially. I've already given an example of the type of research we do undertake that could then be used for drug development later down the line.
So instead, we do projects like the economic paper to raise awareness of the potential value of the tinnitus market to pharma in order that they can see that potential and hopefully be encouraged to invest in it. We have also developed a map to a cure, which we're turning into a larger paper to encapsulate the lessons learned from recent (failed) pharmaceutical trials. We again hope this will lead to the type of research that will increase the likelihood of future drugs trials having a positive outcome. So no, the BTA hasn't directly funded drugs trials but we're working to try and create the environment that drugs companies have said they need to invest in tinnitus research in the future.
And, we're talking about the BTA research funding, which, sadly, is minimal in the grand scheme of things vs the total spend on tinnitus research worldwide. So even if we were scheming away (we're not!) to prevent a cure, how does that hold back global work on a cure?
Look at big pharma - GSK's (to name but one) revenue was over £30 billion in 2017, they have approx 100,000 employees - how do you think the BTA has the influence, stop them from working on tinnitus?
We've already discussed this. We did no COI on Dr McKenna, as our contract was with the University College London Hospitals NHS Foundation Trust. We don't undertake a research contract with individuals as this would be too risky to the research being incomplete, etc. We don't employ the researchers directly, it is up to the contracting body to ensure that the research is carried out to the right ethical standards (via their ethics committee) and to ensure their contact of employment is enforced with their employees.
We've already discussed this. We did no COI of Conflict of Interest) for Dr McKenna, as our contract was with the University College London Hospitals NHS Foundation Trust. We don't employ the researchers directly, it is up to the contracting body to ensure that the research is carried out to the right ethical standards (via their ethics committee)
Again as stated previously Dr McKenna was the principle applicant.Let's be clear. Dr Mckenna was in charge of the MCBT research the BTA funded. Your own website states that "the project was led by Dr Laurence Mckenna".
Every research project by a university or NHS Trust requires ethical approval, typically via a Research Ethics Committee (REC). This is standard practice. The BTA does not have its own REC and instead the body we commission the research from, be it a university or NHS Trust will use its own. The REC is independent of any of the applicants. Ethical approval tends to be a requirement of any article submitted to a peer reviewed journal.Passing the buck on to some other body to do the ethical checks isn't good enough - especially as it's clear that these checks weren't being carried out.
The BTA has 16 employees and 9 Trustees. None of them represent the groups above. We have a Professional Advisors Committee (10 members), which advises the staff and Trustees but is arms length,
We don't know how much tinnitus is worth to this sector in the UK. My belief is that The Tinnitus Clinic is the biggest player - certainly in solely offering tinnitus services. If you look at their abridged accounts via Companies House, they certainly don't appear to be a multi-million pound business; https://bit.ly/2MOjzf6 So taking that - wouldn't they want better ways to manage tinnitus that they could sell to more people, for more money? So therefore want better ways to manage tinnitus and a cure they could sell?
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.
YOU ARE SO RIGHT!!!!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.
We have 9 Trustees - our President and Vice-President are not trustees. We'll correct the page to make it clearer.So according to your website the BTA doesn't have 9 trustees but 11.
https://www.tinnitus.org.uk/Pages/FAQs/Category/trustees
Of those trustees I counted several with links to the audiology industry - including ones who would be in the most influential positions regarding deciding future research - such as your President, who has extensive links with the audiology industry and has for example accepted trips to Australia to test audiological devices.
As Stated our PAC is arms length and whilst makes recommendations, these are not always taken up by our Trustees. Whilst many work within Audiology or similar, they do not have industry links.As well as the professional advisors committee - most with links to the audiology industry you have a large number of corporate members - nearly all with links to the audiology industry.
Thank you Michael. I should stress that I don't think that the BTA's staff are bad people or are insincere in their desire to help. But I do think that their system for approving research is flawed and that much of the research that is produced is also flawed - and that there are some powerful vested interests which help ensure that this is the case.I agree a lot with what you have said in your post and well done for saying it.
Michael
I don't think that the BTA's staff are bad people or are insincere in their desire to help. But I do think that their system for approving research is flawed and that much of the research that is produced is also flawed - and that there are some powerful vested interests which help ensure that this is the case.
We've already discussed that the BTA doesn't fund drug or stem cell research as it is out of our reach financially.
I am not one for attending seminars and conferences for tinnitus. In the 22 years that I have had this condition, I have yet to see any benefit come from them and will leave it at that.