More About the BTA and Tinnitus

We need a cure.
We need effective treatments.
We need therapeutic support for those who are desperate.

All of this wrangling is counter productive.

QED.

 

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.

 

@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

 

I guess all can agree:
Tinnitus is devil's work, eating away at us one day at a time.

 

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?

 

These were studies the BTA commissioned and contracted with the University College London Hospitals NHS Foundation Trust. The contract we hold was with the University College London Hospitals NHS Foundation Trust - if Dr McKenna left midway through the piece of research ( or any other co-applicant) it would be up to the UCLH to replace them. The principal applicant was Dr McKenna, the co-applicants were Dr Marks, Dr Scott, Dr Vogt and Dr Schaette. I don't believe Dr McKenna working outside of the NHS was at the time or is now a conflict of interest. We had a very tight contract in place to ensure delivery of the research to a very exacting specification. We believed the results would be of benefit to the tinnitus community - either positive or negative and entered into the contract in good faith and still retain this.

Our longer term research strategy is to move away from research into ways to manage tinnitus and into lobbying others for significant funding to go into cure based research.

 

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.

Obviously we could have told you "feel welcome to post it in a new thread." We admit, we weren't so specific.

Let's not forget though that we did tell you there are already several existing threads debating BTA and ATA matters - which we thought were more suitable for your post. We're quite busy preparing for the Expo and didn't have time to dig those up for you, but you yourself have before posted critique toward BTA on Tinnitus Talk, so you were likely aware of that fact.

However, this new thread is now here.

Are you content with the thread being here, or do you have further complaints?

 

So when @David does have time maybe he - the head of the BTA - can explain 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.
He still hasn't explained why he didn't even think to ask Dr Mckenna whether he worked in private practice in this field and still hasn't explained why no due diligence was carried out before funding research, when even a basic Google search would have shown up Dr Mckenna's conflict of interest.

And there was nothing Glynis I have said to David Stockdale which was remotely disrespectful. I have simply been questioning the BTA's decisions regarding their research funding decisions.

The "you have been disrespectful" claim is all part of a clear strategy - to discredit any questioning of the BTA. Along with "you are being too negative" and "you personally haven't donated very much so you have no right to question the research funding decisions". All of these strategies were used agains the ME/Chronic Fatigue Sufferers who questioned the research being done on their condition. They didn't work then and they won't work now.

 

Yes that's right - I should have just written a 38 line post from scratch again anyway.

Yes you could have done. But that would obviously have been much too enabling of free speech.

But not too busy to have deleted my post where I originally posted it because you didn't like its contents.

I'll leave it there because the main thing is that this thread has raised awareness of what the BTA is spending research money on - and more importantly all the things it is not spending research money on.

And that's what tinnitus talk is meant to be about - Free Speech and raising awareness. Kind regards

 

There needs to be advocacy groups giving lectures in middle and high schools constantly raising awareness as a preventative measure and advocating school curriculums to adopt educational programs. Preventing someone from getting tinnitus is as good as curing them in my opinion.

 

I'm not sure that's what the statement means, it is unclear and confusing, I'll take it up with our Comms Manager and see if we can clarify it.

Loudness, intrusiveness and stability do matter and that's been recognised in many studies, including the COMIT'iD study - which Tinnitus Hub and BTA (we funded part) were both involved in. This was looking to design a questionnaire around what was important for different types of research study to evaluate and both loudness and intrusiveness were high.

A lot of the training we do for professionals and our Information Days put different opinions of what tinnitus is, what the mechanisms are and what the best ways to manage tinnitus are and the potential avenues for a cure. Because we don't know. Ask an ENT, an Audiologist or a psychologist those questions and you'll likely get 3 different answers. None of them are right or wrong...yet. We try and reflect that in our materials too, to allow people to understand the different perspectives that are out there. If you look through the research reviews we have, again there's very different viewpoints from different specialisms.

 

@David,
Thank you for coming on here and explaining matters a bit clearer for some members and nice to hear the BTA's long term strategies in to Tinnitus Management. The BTA are outstanding in the work they do.

love glynis

@david c,
I have never said you were disrespectful to @David, only to the BTA in general and that was my opinion from your posts but you're entitled to have your opinion.

 

I don't think questioning the BTA's research funding decisions is being disrespectful so we'll have to disagree about that.

 

I for one don't see how a bunch of subjective psychotherapy needs any funding whatsoever. Some fancy pants PhDs feel like their efforts are worth making a living off of. You're just explaining to suffering people that they can continue to live their lives despite their pain. Plain and simple.

I could make the argument that Christianity is far superior to any of this because it puts the nature of disease and death into perspective and offers the hope of being resurrected from death into eternal life, free from all death and disease.

Guess how much that costs? ZERO DOLLARS. Any church would give you a Bible for ZERO DOLLARS.

If I'm wrong then explain to me what any research funding going towards habituation is actually being spent on other than paying psychotherapists. Tables? Chairs?

 

@david c You have been disrespectful of the BTA's @David character and motives. He has been so very gracious and responsive to your theories. 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?

It makes no sense and @David is here on TT giving time and answers.

Very very limited resources not to mention a very small paycheck working endless hours and giving personal time for the upcoming EXPO.

 

You seem to have completely misunderstood the point - so let me briefly explain.

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.

Collectively these groups earn millions of pounds each year from tinnitus - tinnitus is big business.

Absolutely the last thing that any of these groups want is a more effective cure than the their own current largely ineffective but lucrative therapies being developed. It would seriously impact their revenues and in many cases put them out of business. 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.

The BTA publicises itself as working towards a tinnitus cure. But in point of fact that's the very last thing it is working towards because it would put most of the vested interests it represents out of business.

Hope that's clearer.

 

Ummm. No, I understood your point perfectly.

 

Well let's check that particular point. Does Dr Mckenna derive personal financial benefit from the types of mindfulness/CBT therapies which the BTA has funded a number of his research studies in?

Because if the answer is yes that's a clear conflict of interest.

And you say additionally that you didn't know about Dr Mckenna's private practice at the time the BTA was funding his research. That's a clear failure of due diligence. 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.

 

Unfortunately David, no matter what you say or do, you will never convince certain people which is a real shame. The idea that you work against us is quite ludicrous, as any pro-tinnitus related activity is better than nothing (which is what we’d be left with if we had david c to rely on ). You do the best you can with a tiny budget which I respect. I’m not entirely sure what david c expects you to do when the donations are so minuscule, and are entirely this way because of people like him. The irony!

He is going after your integrity whilst avoiding my question from the other day. Again, the irony! I find the least giving in society are often the biggest takers and demanders (and I’m not just talking about money).

I can see what david c is trying to say but his arguments are flawed. I checked your annual reports a while back, and in fact, I posted them on this forum somewhere to highlight certain things that people were unsure about. They clearly show the budget you are dealing with and also show how much you spend. I’m also aware that you’re using your spare time to create better relations - by posting here - which shows great character. I hope moving forwards that more inroads can be made towards curative research, but I’m under no illusion about the enormity of this task.

 

Appreciate and value your support, thank you @Ed209

 

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". He also had a clear conflict of interest as he personally benefits financially from selling the type of psychotherapy the study was aiming to validate.

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 really concerning thing is that this represents yet another parallel with the deeply flawed Lancet study into the application of CBT therapy for ME/Chronic Fatigue Syndrome patients - see link below for further info.

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

In the Lancet study a group of researchers who had financial interests in CBT Therapy were tasked with validating the application of the therapy to ME. The result was a highly flawed piece of research. It took years of hard work by ME sufferers to bring the case to court to force disclosure of the flawed underlying data. I doubt whether tinnitus sufferers have collectively the time or money to bring Dr Mckenna to court to force disclosure of the underlying data of his study but without a shadow of a doubt that data will be equally dodgy.

 

Again as stated previously Dr McKenna was the principle applicant.

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.

 

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 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.

I don't therefore think that the claim that the audiology industry doesn't wield influence on the BTA's decision-making in terms of research really convinces.

Well according to its website "The Tinnitus Clinic has opened at four new sites in just six months, marking a period of rapid growth for the business." They have a Harley Street London headquarters which almost certainly doesn't come cheap and the various "treatments" they offer retail at as much as £5000. Though when it comes to declaring profits for tax purposes many companies unsurprisingly seem to have much less income than one might have thought.

And in terms of what you say about the tinnitus clinic "wouldn't they want a cure they could sell". But the tinnitus clinic wouldn't have the slightest interest in seeing a new and effective tinnitus medication come on the market. Quite the reverse. If approved by NICE and available on prescription from an NHS GP such a drug would be available for less than £10. Why would a tinnitus clinic retailing "treatments" at £5000 want to see such a drug come on the market - especially as it would make many of their treatments obsolete anyway?

 

I agree a lot with what you have said in your post and well done for saying it.
Michael

 

YOU ARE SO RIGHT!!!!

 

We have 9 Trustees - our President and Vice-President are not trustees. We'll correct the page to make it clearer.

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.
We have corporate membership, as a further income stream into the BTA but they have no influence over the running or strategic direction of the BTA.

 

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.

 

@david c

I agree with you David and also believe the BTA and other organisations are trying to do a good job helping people with tinnitus. I have had this condition a long time and have habituated twice. The first medical account of tinnitus was recorded by the Egyptians. Treatments back then were: applying infused oil, frankincense and tree sap to the external part of the ear using a reed stalk. The Mesopotamians found benefit chanting a mantra or meditated to help ease the whispering in the ears as it was called. I believe treatments for tinnitus has come a long way, to help people that are having a difficult time coping with it and to have a better quality of life, although a cure has yet to be found.

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.

I wish you well.
Michael

 

Exactly!! And thank you for writing about this over all the unwarranted accusations made in this thread.

Back in the day, I attended many seminars, conferences and most important presentations in the middle school age range with a friend from the former Tinnitus Clinic at OHSU - Dr. Billy Martin - who helped develop the Dangerous Decibel programs that were implemented in school programs. The kids were very attentive and always had questions concerning the use of ear buds and sound levels.

I remember one conference....by the ATA who allowed Dr. House to speak. It was a packed room standing room only. We attended to support Dr. Jack Vernon who helped create the ATA. A wonderful man. He would spend every Friday taking phone calls back then from tinnitus sufferers all over the world. He passed away a few years back. A big loss for the tinnitus community.

It was NOT a good speech and very egotistical (which happens in all different areas of business). I noticed this one man quickly exit and I followed him out of the room because I was just as angry at the "message" of lies. He was on the floor in tears. His wife and daughter came out after the speech and came over to where we were sitting on the floor crying. He wondered why he wasn't "worthy" because that Dr. and clinic turned him away. My husband stayed in and decided to confront that doctor.

The man turned out to be the father of a famous actress. She was there also with us. We bonded on that day and his wife and I became good friends. She didn't know how to help her husband. Several years later he wrote to me that his life was back on tract and he seemed much more at ease.

There is benefit from these seminars and conferences. And I am looking forward to the reports on the upcoming EXPO where our TT people will be working.