More About the BTA and Tinnitus

Yes I agree that fundamental change is needed to their board. I'd personally be more than happy to give up time in some capacity to make sure that they were starting to move in the right direction - both in terms of correcting information on their website and in their research funding decisions.

 

So David Stockdale in a BTA podcast has announced that the BTA’s vision is: “A world where no one suffers from tinnitus.”

But if this is the case then they certainly have a strange way of going about it. The BTA has spent none of the hundreds of thousands of pounds in research donations it has received over the past few years in biomedical research for a cure.

Instead it has spent the money on duplicating research on management therapies - many of the financial beneficiaries of which include several members of the BTA's medical advisory board and its own President. The current status quo certainly suits them very well indeed.

Ultimately it's actions not words that count...

 

They are definitely making big promises! Fingers crossed they change course and start focusing on cures this year like @David promised in the podcast!

 

The thing I took away from it was that they aren't going to talk about regenerative medicine or take any interest in it whatsoever until it's already developed and proven out. So basically they aren't helping at all.

 

What exact biomedical research are you thinking of?

We discussed regenerative medicine in the podcast and it was clear that regenerative medicine has not been proven scientifically to help tinnitus yet. Once the science about that comes out in studies, they would support it. They don’t want to support something that doesn’t have scientific backing for obvious reasons.

 

They are waiting for scientific research to prove it helps tinnitus and not just hearing loss. Regardless of what theories we have about it, they want concrete evidence. Just like how they want scientific evidence before they support bimodal stimulation.

They don’t want to be seen supporting scams or giving false hope about treatments. It is rather logical.

 

Nonsense. They can pursue and fund avenues of research that may hold the promise of treating tinnitus before other people prove that it's effective. What is even the point of donating to research? That's what the point of research even is. Just because they donate to a particular line of research or promote something as a potential treatment doesn't mean that they have to turn around and announce to the world that they've found a cure for tinnitus and give people false hope. Let's say restoring hearing doesn't alleviate tinnitus, well, that's an important question that needs to be answered as soon as possible. To say they don't want to get involved in that is a total cop-out and being who they are makes them actually a detriment to the advancement of this field to begin with.

How can they claim to be interested whatsoever in a cure if they are just going to sit around and wait for other people to discover it for them?

 

They are going to pursue and fund (with their little £80k per year that they can fund research with) avenues of cure research. Did you even listen to the interview?? David Stockdale said they are going to start focusing on the cure pathway more this year. You're not even giving them a chance to change their ways, you're putting them down based on your previous disappointments. That's shitty of you.

 

Yeah I listened to the interview. I guess I'm shitty for having a negative opinion about the BTA.

 

No @JohnAdams you're not sh***y for having a negative opinion about the BTA at all. There is a lot of justifiable anger at the BTA's research funding decisions which can be seen on their social media pages.

The figure given by someone else on this thread of £80K a year spend is not correct - I think the most recent figures were around £140K per annum. Not a vast amount but not a negligible one either. If the BTA had teamed up with Action on Hearing Loss in the UK they could have together done some really significant work in terms of biomedical research towards a cure. Instead the BTA have chosen to spend in on yet more "habituation" studies to add to the 200 others out there.

Maybe the BTA will start to change direction this year - but we won't hold out breath. It certainly needs to.

 

I want to know how much they pay themselves.

 

http://apps.charitycommission.gov.uk/Accounts/Ends45/0001011145_AC_20180331_E_C.pdf

 

So this attachment demonstrates what I have been saying. Up to now the BTA's main focus has been on duplicating management strategies research - especially mindfulness and CBT. The BTA's own figures calculate that there have now been 200 research studies on CBT and tinnitus. That's just a waste of resources.

What this new research strategy will amount to we wait to see. So far there seems little to show for it but a map - but we will keep tracking activity.

 

No more this!

 

Quote from the BTA's recent Annual Tinnitus Research Review 2018:

"Psychological approaches to tinnitus treatment are a popular management strategy and subject for research. A recent review [15] found there have been over 5,000 studies."

Source: https://www.tinnitus.org.uk/Handlers/Download.ashx?IDMF=e0193da0-65f7-4c40-bb96-d94aa8ffa9de

When resources are so scarce we just don't need this over-duplication of psychological tinnitus research studies. We now know pretty much everything we need to know about psychological approaches to tinnitus. No more of this. What we need instead is good quality biomedical research.

 

I'm not sure why picking on the BTA is helpful. They are doing what they can that includes awareness of what causes tinnitus. Many don't have a clue as to what can cause tinnitus.

All the causes of physical tinnitus non hearing has been found. The problem is that healthcare and insurance doesn't want to investigate what a person's cause may be. The BTA and tinnitus associations need friends and friends for contributions. If they took a stand against healthcare then they would be fighting for survival. With that - in the future I expect more private interest to get involved with tinnitus associations; as promotion of research is good for their other corporate interest.

 

In fact pressure from this thread and others has already started to have a positive result with a change in direction on their research strategy - though as I said before little apart from a map seems to have been delivered so far. We await developments.

Why is it helpful for the BTA to be adding to the 5000 other studies of psychological approaches to tinnitus?

Your other comments regarding insurance seem more appropriate in the US context rather than the UK one where we have a state health system.

 

That's a catch 22 my man. They don't want to fund research for something until the research is done and the science proves it.

Also, I have posted a peer reviewed medical paper many times on this website that shows dexamethasone can recover acute hearing loss and also insulin like growth factor 1. The paper points to multiple human based clinical trials and indicates that IGF-1 may be regenerating destroyed hair cells. The BTA also has a mention of dexamethasone on their website and they state that:

"Intratympanic membrane injections have been attracting some interest. The steroid dexamethasone was used on 27 patients, with 27 others in the control group receiving a saline injection. There was some improvement in both groups, but there was no significant difference between them"​

This study doesn't mention if the patients were chronic or acute.

 

True as far as their representation for the British Commonwealth, but tinnitus is universal and therefore their audience is also universal.

Many non profit tinnitus associations are getting corporate involvement where there's a 50/50 directorship. It's often a matter of donation influence for the non profit directorship and positive other business promotion for the corporate entity where both win as research also has worldwide collaboration.

Because hearing loss tinnitus and physical tinnitus have same and other mechanisms. Many hearing loss studies has private entity involvement. All the reasons for physical tinnitus has been discovered. One article that I read said 99.9 has been discovered. The BTA can't go up against healthcare in other countries to treat physical tinnitus, but physical tinnitus improvements in England are no better than in the USA. If the BTA went up against British healthcare for patient assistance they would lose friends. So what is left? Coping and awareness as to what causes tinnitus.

 

If you think that 5000 psychological studies on tinnitus while so little has been done in terms of biomedical research is a good outcome then I don't. We need to concentrate our resources where they will have the most positive impact.

 

Uh, what?

 

There's been over ten thousand studies of biomedical research on problems above the shoulders. With that there are millions of articles, papers and textbook notations where tinnitus is mentioned per a condition, but not always in subject title.

There are several entities involved in both hearing/ears and brain research where most have substantial private or public Wall Street money. One is SAGE, a neuro brain company where the Chairman of the BOD is a CEO of a hearing/ear company. His name is Jonas.

Sure, more can be done with hearing loss tinnitus research, but the brain also seems to have associations. SAGE has said that we collaborate with all in the neuro space.

All tinnitus awareness is needed, but for those with physical tinnitus where the causes are known we need healthcare to examine. 70% or more with hearing loss tinnitus also have physical tinnitus relations or will develop conditions such as pulsatile tinnitus. Arthritis can travel anywhere. Sinus problems often develop from any cause of tinnitus. Tinnitus is often multi system or can become so.

 

Stop trying to muddy the waters. Fact is that most tinnitus comes from damage caused by noise or drugs and there's strong indication that several known compounds can recover people from that damage, especially if intervention is quick. That is what needs research and awareness. If you don't agree then you're part of the problem.

 

True initially - maybe 70% but there may have been physical reasons as to why the ear were weak or a combination with loud noise. Then consideration needs to be made to other problems that can develop afterwards. Problems that has tinnitus influence.

Agree. This is an awareness point that I make. Healthcare needs to take quick action instead of giving appointments next week or month or saying you will need to live with it.

 

They are not taking action in a meaningful way so as of now any doctor's appointment is pointless.

 

The BTA are looking for a new Trustee to help guide the BTA's fundraising work. A chance for @david c or someone else to change the course of BTA? I read about it here https://www.tinnitus.org.uk/the-bta-is-looking-for-trustees

 

Definitely an opportunity for someone here though the requirement to regularly attend meetings in Sheffield, the opposite end of England to where I live and work means that I won't be applying.

I am more than happy though to offer unpaid help for the BTA in terms of redirecting its research efforts and ensuring the accuracy of its online information.

And with the second point in mind this is a brief reminder to @David that we await a response regarding the evidence base of two statements in the BTA's tinnitus and drugs leaflet:

Specifically:

1. "the number of drugs that genuinely cause tinnitus is extremely small."
2. "in many cases it is the stress of the illness rather than the drug used to treat the illness that triggers the tinnitus"

 

New video by the BTA, they can't even use the word "debilitating" because it's too negative. I know they mean well but not everyone will learn to tune it out and they shouldn't state it as if it's a fact. Also, even a minority of people with severe tinnitus consists of millions of people. Saying most people get better is not having the same effect as saying "Millions of people are debilitated by tinnitus".



They're also promoting their CBT program again with statements saying that everyone that wants to can "overcome" tinnitus:


Their CBT programme is the typical "just relax and your brain will tune it out":

• "The Tinnitus E-Programme walks you through from DYSREGULATION to your nervous systems being REGULATED and you getting your life back"
• "The whole issue of tinnitus when surrounded and immersed in emotion, whether it's fear, anger, frustration, sadness, hopelessness or overwhelm is complex - but it is NOT unchangeable"

 

Hi, I was passive reader and so far I found this thread pretty interesting, but looking at video thumbnail above "Some people do not mind having tinnitus" all comes to my mind is - WTF!?, how is that helpful? @David are you still member of BTA and can you elaborate what kind of message is this?

I am neither British nor American, so not sure why should I be concerned about BTA and ATA, but...

I have an impression that many here don't realize that BTA budget of 750k GBP is a grim joke when comparing to number of people affected by T and social and economic cost of T burden. At least according to what I read about it in UK. I guess you can compare BTA's budget to a budget of a small book shop in London or something. Expecting that some small book shop can fund a breakthrough treatment or any solid research other than mindfulness is pretty native. While @david c raised many valid concern and I do agree that BTA's budget spent on mindfulness is a money thrown away, also I believe that constant complaining is not constructive at all.

Personally I think BTA (and similar) should focus on ... guess what - fundraising and raising awareness - looking for investors, celebrities, rich people, or normal people to help with the cause. I just read that Melinda Gates is committing 1 billion USD to promote gender equality. How about finding 10 million and then funding some biomedical research. I have absolutely no clue what it is so hard so try to reach out to all these famous British musicians and celebrities (that are often known to be affected by T) to help with that, especially if you call yourself British Tinnitus Association. I have impression that current actions are not necessarily driven by bad intentions but not so good management and prioritization.