BTA Are Launching a Funding Drive Towards a Cure

[Ed209]

It's good to finally see a proactive step being made towards finding a cure. More details can be found here:

https://www.tinnitus.org.uk/funding-tinnitus-research-looking-for-a-cure

"We need a cure for tinnitus" is a comment we hear often. People with tinnitus want their tinnitus loudness reduced and many would prefer a drug based solution over other options.

We are pleased to be able to announce that we are opening two research funding rounds - our largest ever - to make sure that vital research towards a cure happens.

The streams will incorporate a large grants programme of up to £125,000 for a project or projects which meet our research priorities. Up to £10,000 per year is available for the next three years for smaller projects.

Please also share amongst your networks - thank you!

 

[Contrast]

 

[Ed209]

View attachment 31400

These are the projects that need to be backed if we want to improve our chances of seeing a cure. It's the unrelenting apathy that needs to be cast aside.

The community asked for a drive towards a cure, and as far as I can see, they are now delivering this, so now is not the time to be hypocritical. If you all want to help in an objective way then support this drive financially (if you have the means) or help by sharing it far and wide over social media. You would be contributing in a significant way by doing either of these things. However, if moaning and criticising takes centre stage, instead, then you would be helping maintain the status quo which is exactly what you are all supposedly against!

Let's see a real community effort and let's all do whatever we can.

 

[annV]

Unfortunately, and honestly, given BTA's track record, I would not be giving my money to them.

Let's see in 5 years if they have really made any wise decisions with this new amazing "cure fund drive"... which should have happened 20 years ago! BTA really need to do a better job.

In the meanwhile, look out for their great Ambassador Samantha Baines cracking jokes about how trivial tinnitus is at the next BTA Expo...

 

[Ed209]

Unfortunately, and honestly, given BTA's track record, I would not be giving my money to them.

Let's see in 5 years if they have really made any wise decisions with this new amazing "cure fund drive"... which should have happened 20 years ago! BTA really need to do a better job.

In the meanwhile, look out for their great Ambassador Samantha Baines cracking jokes about how trivial tinnitus is at the next BTA Expo...

Which is fair enough. I don't agree with all of their policies, but now that we have a genuine drive for a cure, we should be supporting it in my opinion. They are doing what everybody asked for, so it's a bit hypocritical to complain now.

They came through on Danny's Memorial Fund, so we know the money will be going to research scientists. It was exactly one year ago we did this on a smaller scale and it worked. This latest drive seems to be based on similar principles but with more money in mind.

 

[Ed209]

There is already a lack of support building on Facebook which I find astonishing. Tinnitus has to be one of the most underfunded conditions out there and people seem to want to keep it this way. We already have many therapies so I don't understand Anna's point-of-view. It's illogical.

People need to get behind this in large numbers because other charities may well follow suit if they see that this is what the community want. Especially if it is successful.

The tide could be turning at this point but if we all start paddling in the wrong direction then everything will stay exactly the same as it is today, and it may well thwart other people's efforts to try something similar in the future.

 

[Candy]

Just read it and it's great messaging, it's where we want to head...

Why are some of you so anti-BTA - there's only 19 people working at the BTA, they're not backed by any celebs, no big names... They can't do miracles. If patients don't advocate for themselves then who will...

I bet you very few tinnitus sufferers talk about their fight online or offline and fewer have relatives who do it on their behalf so awareness is still low, funding too...

Of course we need the BTA to deliver a message that is consistent - there's a place for therapy but for many that won't be as beneficial and we need a cure.

In the meantime let's back out our cause on their Facebook page.

 

[JohnAdams]

I like how they don't link to the full size image of their roadmap. Here is a slightly clearer snippet.

One branch from "Discovering a cure" is
Non-pharmacological -> Exercise -> Quigong, Tai Chi, and Yoga.

Do they honestly think friggen Tai Chi is going to cure tinnitus enough to include it on their "choad map?"

I'm sorry, but these people ARE stupid.

 

[jay777]

Quigong, Tai Chi, and Yoga.

It's better than TRT-CBT. At least you get fit.

 

[TuxedoCat]

There is already a lack of support building on Facebook which I find astonishing. Tinnitus has to be one of the most underfunded conditions out there and people seem to want to keep it this way. We already have many therapies so I don't understand Anna's point-of-view. It's illogical.

Not only is it illogical it's dangerous. What if everyone with Parkinson's or any other neurological condition took this attitude?

ENTs, hearing therapists, audiologists and the like have created and maintain an apathetic tinnitus population with their Jasterboffian ways. They all have opinions about what tinnitus sufferers should and shouldn't do with none of it based on evidence, only their opinion as 'authorities". It's nauseatingly a throwback to the 1950s and 60s.

I'm glad to see that BTA will promote research alongside patient support. With a healthy dose of realism to manage expectations, the two can co-exist. Good quality research needs to continue, if not for a cure in our lifetime, then for future generations.

My only frustration is this from BTA's website-

"However, in order to progress research from discussion to the laboratory or clinic, money has to be found. There is a striking differential in tinnitus funding compared to other conditions with a similar prevalence and health burden (Cederroth, Canlon, Langguth 2013). Although we do not have the resources to address this imbalance we are pleased to be able to announce that we are opening two research funding rounds to make sure that this vital research happens."​

One would hope that organizations such as ATA and BTA would be able to address the imbalance, especially if the imbalance is created by a lack of government funded research.

TC

 

[JohnAdams]

Not only is it illogical it's dangerous. What if everyone with Parkinson's or any other neurological condition took this attitude?

ENTs, hearing therapists, audiologists and the like have created and maintain an apathetic tinnitus population with their Jasterboffian ways. They all have opinions about what tinnitus sufferers should and shouldn't do with none of it based on evidence, only their opinion as 'authorities". It's nauseatingly a throwback to the 1950s and 60s.

I'm glad to see that BTA will promote research alongside patient support. With a healthy dose of realism to manage expectations, the two can co-exist. Good quality research needs to continue, if not for a cure in our lifetime, then for future generations.

My only frustration is this from BTA's website-

"However, in order to progress research from discussion to the laboratory or clinic, money has to be found. There is a striking differential in tinnitus funding compared to other conditions with a similar prevalence and health burden (Cederroth, Canlon, Langguth 2013). Although we do not have the resources to address this imbalance we are pleased to be able to announce that we are opening two research funding rounds to make sure that this vital research happens."​

One would hope that organizations such as ATA and BTA would be able to address the imbalance, especially if the imbalance is created by a lack of government funded research.

TC

Amazing I totally agree with Ed on this one. Can we, however, keep the BTA out of this?

 

[Ed209]

For the benefit of those who are not on Facebook, here's a follow-up post that may interest you.

Here's the linked article:

https://www.frontiersin.org/articles/10.3389/fnins.2019.00802/full?&utm_so

 

[Ed209]

I like how they don't link to the full size image of their roadmap. Here is a slightly clearer snippet.
View attachment 31405


One branch from "Discovering a cure" is
Non-pharmacological -> Exercise -> Quigong, Tai Chi, and Yoga.

Do they honestly think friggen Tai Chi is going to cure tinnitus enough to include it on their "choad map?"

I'm sorry, but these people ARE stupid.

That's version 9 of the roadmap. They are currently using version 10 which was updated in June of this year.

The article I linked to above is quite comprehensive and well worth reading as it covers many different facets. Tinnitus Hub even gets a mention.

I don't understand the criticism. This is a campaign that aims to cover what everyone has been asking for, so what is the benefit in trying to sabotage it? This is something we should all get behind.

 

[TuxedoCat]

@JohnAdams

NEWSFLASH for you, JohnAdams - BTA is starting to move away from funding psychological treatments.

Certainly BTA's past research strategy which emphasized psychological therapies will introduce an element of doubt and mistrust about this change in direction. Right now I am skeptical as well and the Samantha Baines thing has me concerned about errors in judgement.

But, keep in mind that BTA did as we asked when it came to Danny's memorial fund. So it will be important that the tinnitus community in the UK not scatter to the corners when it comes time to give input into BTA's grant selection process. Right now, we should be asking how BTA will decide who from among the tinnitus community will participate.

It will be easy to sit there and criticize and much more difficult to ask yourself what it is you need to know in order to be convinced and to then seek out that information before making a judgement.

Why do I surmise that anything short of studies into reversing hearing loss will result in a barrage of criticisms of the BTA from you? You are sooooo predictable!

TC

 

[JohnAdams]

Right now I am skeptical as well and the Samantha Baines thing has me concerned about errors in judgement.

Samantha Splains?

Why do I surmise that anything short of studies into reversing hearing loss will result in a barrage of criticisms of the BTA from you? You are sooooo predictable!

I don't just think it is all hearing loss. Duh, some people have hearing loss without tinnitus / I think a big component is dysregulation of chemical signaling pathways and neuroreceptor sites due to glutamate excitotoxicity and other ototoxic things like poisons prescribed by doctors and even cortisol from stress.

However, look what you just did, you made a prediction, didn't even wait for it to become true, and then did a victory dance.

 

[annV]

Why are all of you posting low resolution illegible versions of the Cure Map?

Here is a high resolution one...

 

[TuxedoCat]

Here is a high resolution one...

This is hilarious.

When I first saw this map, it was called both a mind map and a cure map. Really those are 2 different things and this map is neither. It's probably most effective for inducing the "deer in the headlights" phenomenon in anyone trying to understand it.

All joking aside, BTA/Don McFerran get a lot of points for what they learned in the process of putting it together and translating it into a published paper.

TC

 

[JohnAdams]

This is hilarious.

Yet, tragic.

 

[TuxedoCat]

Yet, tragic.

Not really. Tragic is an overstatement. I give Don McFerran a lot of credit. He's a physician, not a researcher or project manager and he's put himself out there with this map. It would have been tragic if BTA continued to fund studies of Mindfulness and the like.

There is not a lot of money at stake here. For all this hoopla, BTA are simply funding a yet to be determined study for 125,000 GBS study and a few smaller, 10,000 GBS, projects. Chicken feed.

I do agree that tinnitus research is underfunded and that is tragic and frustrating.

I haven't read BTA's paper yet, maybe they see what they are about to do as something that will attract more money for tinnitus research.

My sense is they will be pursuing cortisol as a biomarker.

However, look what you just did, you made a prediction, didn't even wait for it to become true, and then did a victory dance.

Darn it, I thought I was just using a bit of reverse psychology. Guess I need to go dance now. Then I'll read BTA's new publication.


Take Care, TC

 

[Autumnly]

Not sure if this has been posted before:

Why Is There No Cure for Tinnitus?
Don J. McFerran, David Stockdale, Ralph Holme, Charles H. Large and David M Baguley

• Studies of the delivery of tinnitus services have demonstrated considerable end-user dissatisfaction and a marked disconnect between the aims of healthcare providers and those of tinnitus patients: patients want their tinnitus loudness reduced and would prefer a pharmacological solution over other modalities.
• When asked to define treatment success, audiologists identifying decreased awareness (77%) and stress/anxiety relief (63%) whereas patients sought reduction of tinnitus loudness (63%), and elimination of tinnitus (57%).
• A research priority setting exercise was undertaken for tinnitus (Hall et al., 2013) in which patients, families, and clinicians partnered to identify the top ten tinnitus research priorities. Of these ten priorities, seven pertained directly to the improvement of existing treatments/therapies, or the identification of novel interventions.

Finally.

Also interesting:

• a survey of patients attending a specialist tinnitus clinic (the Tinnitus Clinic of the Welsh Hearing Institute) were surveyed regarding the perceived benefits and shortcomings of the clinic (Sanchez and Stephens, 2000). The biggest criticism of the clinic was that 17.1% described the interventions and treatments as ineffective.

 

[annV]

• When asked to define treatment success, audiologists identifying decreased awareness (77%) and stress/anxiety relief (63%) whereas patients sought reduction of tinnitus loudness (63%), and elimination of tinnitus (57%).

Finally.

Suck it, audiologists, peddlers of hearing aids and TRT!

 

[Autumnly]

Suck it, audiologists, peddlers of hearing aids and TRT!

Unfortunately, it's not just audiologists and ENTs.

There is already a lack of support building on Facebook which I find astonishing. Tinnitus has to be one of the most underfunded conditions out there and people seem to want to keep it this way. We already have many therapies so I don't understand Anna's point-of-view. It's illogical.

People need to get behind this in large numbers because other charities may well follow suit if they see that this is what the community want. Especially if it is successful.

The tide could be turning at this point but if we all start paddling in the wrong direction then everything will stay exactly the same as it is today, and it may well thwart other people's efforts to try something similar in the future.

This is just sad. Thank you for leaving comments!

 

[derpytia]

Suck it, audiologists, peddlers of hearing aids and TRT!

me: Logs onto Tinnitus Talk to catch up on what I've missed
me: Sees annV actually say "Suck it"
me: "...Am I somehow in an alternate timeline???"

Jokes aside, I really really hope that the BTA actually listens to the patient base on this one rather than just doing whatever.

 

[JohnAdams]

me: Logs onto Tinnitus Talk to catch up on what I've missed
me: Sees annV actually say "Suck it"
me: "...Am I somehow in an alternate timeline???"

Jokes aside, I really really hope that the BTA actually listens to the patient base on this one rather than just doing whatever.

Even if they fumble this, which they probably will, there are corporations actively investigating this issue and they, unlike the BTA, are motivated by profits and driven by investors and shareholders. If the BTA is involved in successfully discovering a cure for hearing damage and/or tinnitus then I will give the BTA $1,000.

 

[TuxedoCat]

If the BTA is involved in successfully discovering a cure for hearing damage and/or tinnitus then I will give the BTA $1,000.

Hahahahahahahahahahahahahahah.

Giving $1,000 at that point would be too late in the game. They might take themselves out for a nice dinner to celebrate and then you would complain that they squandered the money.

Why don't you give sooner and then bask in the glory when they are successful, knowing you had a part in it?

You've said you would like to put more skin in the game. Now is your chance.

 

[JohnAdams]

They might take themselves out for a nice dinner to celebrate and then you would complain that they squandered the money.

That would be the entire point of giving them the money, to reward them.
And what are you babbling about? I have put skin in the game. I paid to help a Tinnitus Talk member travel to be in the last FX-322 trial, I flew to Korea and tested out Minbo Shim's surgery, leaving my hips scarred, literally putting skin, and blood, in the game. I'm not giving the BTA a damn dime until they have a good lead.

 

[Ed209]

Not sure if this has been posted before:

Why Is There No Cure for Tinnitus?
Don J. McFerran, David Stockdale, Ralph Holme, Charles H. Large and David M Baguley

• Studies of the delivery of tinnitus services have demonstrated considerable end-user dissatisfaction and a marked disconnect between the aims of healthcare providers and those of tinnitus patients: patients want their tinnitus loudness reduced and would prefer a pharmacological solution over other modalities.
• When asked to define treatment success, audiologists identifying decreased awareness (77%) and stress/anxiety relief (63%) whereas patients sought reduction of tinnitus loudness (63%), and elimination of tinnitus (57%).
• A research priority setting exercise was undertaken for tinnitus (Hall et al., 2013) in which patients, families, and clinicians partnered to identify the top ten tinnitus research priorities. Of these ten priorities, seven pertained directly to the improvement of existing treatments/therapies, or the identification of novel interventions.

Finally.

Also interesting:

• a survey of patients attending a specialist tinnitus clinic (the Tinnitus Clinic of the Welsh Hearing Institute) were surveyed regarding the perceived benefits and shortcomings of the clinic (Sanchez and Stephens, 2000). The biggest criticism of the clinic was that 17.1% described the interventions and treatments as ineffective.

This is from the article I linked above. I'd recommend anyone who's interested in learning more to read all of it.

Even if they fumble this, which they probably will, there are corporations actively investigating this issue and they, unlike the BTA, are motivated by profits and driven by investors and shareholders. If the BTA is involved in successfully discovering a cure for hearing damage and or tinnitus then I will give the BTA $1,000.

The mantra never changes and this is why the tinnitus community has been treading water for so long. Quite literally, whenever a pro-cure campaign is launched, there is nowhere near as much support as there should be, and yet for some bizarre reason, vast amounts of energy can still be found to post stupid shit on here instead.

Success breeds success. I've said this time and time again in the past. The money for this campaign is ultimately chicken feed as @TuxedoCat pointed out, but that's not the point. At the end of the day, the BTA is a small charity and don't have anywhere near the kind of power or influence as people here believe they have. They are based out of a small office in Sheffield with just 19 staff. There are nearly 30,000 members here and probably many more lurkers.

It's up to the tinnitus community to demand respect and to make its voice heard, but whenever an opportunity arises, nobody does a damn thing except bitch and moan on here. There have been opportunities to promote the cause under the spotlight of the press - and other influential eyes - but nobody ever says a peep and/or lifts a finger to help create the ripples that are necessary. I can understand why it's so infuriating for Markku who's been fighting this battle since day dot.

If everybody backed these campaigns with the kind of fight that they show on here then things might actually change in the real world. All the small successes that are achieved will promote further successes down the line as people begin to wake up and realise that they can make a difference. This continued pressure, if it ever happens, will ultimately start to turn the heads of more influential people. This is how you fight for change. We need the patient community to be far more vocal away from Tinnitus Talk and other support forums, but I don't think it will ever happen as in my four years here I've never seen a glimpse of it even looking like a remote possibility.

 

[JohnAdams]

Does the BTA even have a working theory on the cause of tinnitus?

 

[TuxedoCat]

I'm not babbling.

Well, I'd think that the ones that have a job doing advocacy and get on the news and whatnot would be better positioned than me, but, you're right. I guess I could put some more skin in the game. Really, I spend most of my efforts trying to learn about nerve dysfunction and attempting, very possibly completely in vain, to find a DIY way to treat this condition.

@JohnAdams, I don't necessarily share the view that Mimbo Shim is a complete charlatan. I know very little about him.

However, you put yourself and your family at considerable risk going to South Korea to receive an unproven and invasive treatment. And, please understand that is not a criticism of you either. You are capable of evaluating risks and benefits and making your own decisions. I'm not judging you.

But, we are not talking about the risk of loosing $12.95 on a bottle of Lipoflavonoid. Instead, it does go to show how miserable tinnitus is and the extent of risk people will take on in the hopes of a finding a meaningful treatment or cure.

 

[TuxedoCat]

Does the BTA even have a working theory on the cause of tinnitus?

I have a similar question and I'm reading 'cause' in your question as 'mechanism'. I read BTA's paper yesterday and it left me wondering if anything positive has occurred in tinnitus research in the last decade. I really feel the need for an objective overview of the state of tinnitus research - what does the research community know and agree upon, especially with regard to mechanisms that set up and maintain tinnitus in the brain?

The ATA had an extensive cure map but a couple of years ago, they simplified it into the version that now appears on their website. They have a requirement that in order for research to be funded by one of their grants, it has to fit somewhere on the map. Something must have come from the projects they've been funding.