Stop Giving Money to the British Tinnitus Association

[david c]

we're just a very small group of volunteers with little time and negligable funds. It would be really nice if you would stop publicly attacking us for our supposed lack of initiative.

This is completely true and we all really appreciate the hard work you put into Tinnitus Talk. What we need to realise is that we are up against a powerful group of vested interests - that is a group of people and organisations who commercially benefit from the current tinnitus status quo - i.e. the lack of any cure - and who will do as much as possible to ensure that status quo continues. This group unfortunately includes the main leaders of the BTA.

How do I know this? For the past few weeks I have been reading through the (many) online documents related to the development of a "tinnitus clinical pathway" by NICE in the UK. Over the past year or so a committee has been meeting to decide the future of tinnitus treatments in the UK - their decisions will influence how tinnitus is treated in the UK health system for the next decade or more. I've read through each of the minutes of their meetings, the documents related to the composition of the committee and the declared conflicts of interest of that committee.
(If you wish to disagree with me about this feel free - but please do the reading up of all this information first).

What I can tell you is this: This committee (which includes the BTA head David Stockdale) has several members with commercial interests in the treatment of tinnitus as primarily a psychological condition. It has a few token lay members of the public who were recruited through a non-open recruitment process, who have not always shown up to the meetings and who have primarily acted as a rubber-stamp for those who believe that tinnitus should be treated as a psychological condition.

What this means is this: There is of course a lot of anticipation about Neuromod currently and speculation about whether a device such as Neuromod's could ever be approved by NICE for use by the NHS. This committee will effectively prevent that from happening by ensuring that the clinical pathway for tinnitus consists primarily of psychological treatments such as CBT, TRT and mindfulness (plus hearing aids for those tinnitus patients with hearing loss.

It will also ensure that medications, stem cell research and other potential treatments are effectively precluded from the main tinnitus clinical pathway. If we are going to ensure that there is any chance of non-psychological treatments for tinnitus having a major future role in the treatment of tinnitus in the UK health system we have a very short period of time to challenge the workings of this committee and the vested interests it represents.

We can do this - but we first we need to realise what we are up against. I'm taking the first steps by putting in a number of freedom of information requests from NICE - I'll keep you all updated with the information this reveals. Nothing less than the future of tinnitus treatment for all UK citizens is at stake.

 

[Agrajag364]

On the BTA's Facebook page they have mentioned something we have discussed many times on this page... the concept of each tinnitus sufferer donating $1 or £1 a month and the amount of money it would generate which could be put towards research.

Their website has the capacity to take £1 donations.

I have consistently said this is the ONLY way we will boost our chances of a cure immensely. If you can, please get onboard with this.

@David This is a brilliant idea, it is the way forward so please please please promote it heavily and put the money towards research for a cure!

This is a great idea. If people have strong objections to the BTA they could donate to Action on Hearing Loss as an alternative who told me they do non-psychological research into tinnitus causes.

 

[Contrast]

For the most part the baby boomers are okay with TRT, CBT and hearing aids and the monopolies going on with Pawel Jastreboff and the hearing aid industry because they don't have a clue what's going on. They don't know about scientific knowledge that can lead to treatments of tinnitus, hearing loss and pain hyperacusis. These are people that barely know how to use a computer, and the reason the price of hearing aids are so high is because they don't know how to simply program them.

The rhetoric of mentally tough guys learning to live with chronic pain, hearing loss, and tinnitus is empowering to them. They'll never figure out their ear fullness form acoustic trauma was mis-diagnosed as ETD, TMJ or fluid behind the ear. They just learn to ignore loud reactive tinnitus and middle ear muscle spasms from noise, they probably wonder why music sounds like garbage when they have severe hidden hearing loss. They also idolize "the good ol days" where everyone was a conservative christian 1950's style family. That life philosophy taught them to hate people who are different from them and never complain about anything except people who are different.

The only good thing I have to say about them is that it is possible Donald Trump cutting economic regulations may have helped the bio-race for curing hearing loss/tinnitus but that's not something Trump directly intended. He certainly isn't a scientifically literate person on anything but economics. Don't even get me started on the environment.

 

[david c]

On the BTA's Facebook page they have mentioned something we have discussed many times on this page... the concept of each tinnitus sufferer donating $1 or £1 a month and the amount of money it would generate which could be put towards research.

Their website has the capacity to take £1 donations.

I have consistently said this is the ONLY way we will boost our chances of a cure immensely. If you can, please get onboard with this.

@David This is a brilliant idea, it is the way forward so please please please promote it heavily and put the money towards research for a cure!

It would be a great idea if the money given goes towards research for a cure. If given to the BTA though not a penny of it will be spent on curative research - there are other organisations who would use the money better.

 

[Allan1967]

It would be a great idea if the money given goes towards research for a cure. If given to the BTA though not a penny of it will be spent on curative research - there are other organisations who would use the money better.

That may be so, but what I'm promoting is the concept.

 

[TuxedoCat]

If people have strong objections to the BTA they could donate to Action on Hearing Loss as an alternative who told me they do non-psychological research into tinnitus causes.

Interesting, maybe I should add that to the write-up on AoHL in Worthy Causes. -TC

 

[Starthrower]

FYI from personal experience.

When a tinnitus organization such as the ATA decided to drop all programs in 2005 except research for a cure as its main and only objective and mission statement - the organization died off within a year.

They produced something called the Roadmap for a Cure. It failed as did the organization.

Back in the day the ATA was a large organization with several dedicated employees. It was a wonderful caring organization. Staff was dedicated with little pay. Patient care was primary and research was pretty much secondary but equally important.

Research only fails us when it comes to the ATA or the BTA.

What is needed is a balance. They will never be able to produce a large enough research grant that would make any type of difference.

Support the BTA for awareness and patient information and education.

Support research organizations for that specific purpose.

We need both.

 

[JohnAdams]

It's like this:

Does everything the BTA does involve funding research that is specifically aimed at curing hearing loss and tinnitus?

The answer is "no".

Does the entire tinnitus community believe that should be their sole function?

The answer is also "no".

As long as the community is divided about what our advocates' priorities should be then they will continue to do what they think they should do. The community will most likely remain divided in opinion about this because many of us value continued research funding for non-curative psychological quackery which blows me completely away considering that they now know how to regenerate human hearing, which I understand will not cure all cases of tinnitus.

But just imagine this: What if they found a cure for cancer that cured 80-90% of cancer cases but the cancer orgs like the American Cancer Society refused to talk about it, promote it, or fund it because it didn't cure 100% of cancer cases?

 

[Gl0w0ut]

FYI from personal experience.

When a tinnitus organization such as the ATA decided to drop all programs in 2005 except research for a cure as its main and only objective and mission statement - the organization died off within a year.

They produced something called the Roadmap for a Cure. It failed as did the organization.

Back in the day the ATA was a large organization with several dedicated employees. It was a wonderful caring organization. Staff was dedicated with little pay. Patient care was primary and research was pretty much secondary but equally important.

Research only fails us when it comes to the ATA or the BTA.

What is needed is a balance. They will never be able to produce a large enough research grant that would make any type of difference.

Support the BTA for awareness and patient information and education.

Support research organizations for that specific purpose.

We need both.

I guess funding falls to the NIH and NHS then. Though the government is so bogged down in inefficiencies I am uncertain we can count on them.

What if we made a formal contract with the BTA, stating we could get them funding but it could only be used for biomedical funding. Not meta analyses or psychological treatments but actual neurological treatments.

 

[MBH]

How do you raise awareness when 50% of us have mild tinnitus? How to make them see the light of how the other half really lives - or doesn't live. Once you have them on board that would be something.

 

[Starthrower]

What if we made a formal contract with the BTA, stating we could get them funding but it could only be used for biomedical funding. Not meta analyses or psychological treatments but actual neurological treatments.

Personally, I wouldn't think twice about donating to a fundraiser where Tinnitus Hub/Talk leadership and membership have decided on the purpose of the fundraiser and BTA act as the administrator.

@Gl0w0ut and @TuxedoCat that is a reasonable and smart idea. The BTA did so with the Tinnitus Hub/Talk fundraiser for Danny's grant. The same model could be used here at Tinnitus Talk if the BTA agreed. The problem is not many donate anymore. At least not enough to make a big difference whether it is the BTA, Tinnitus Talk or a tinnitus research organization.

 

[Agrajag364]

It's like this:

Does everything the BTA does involve funding research that is specifically aimed at curing hearing loss and tinnitus?

The answer is "no".

Does the entire tinnitus community believe that should be their sole function?

The answer is also "no".

As long as the community is divided about what our advocates' priorities should be then they will continue to do what they think they should do. The community will most likely remain divided in opinion about this because many of us value continued research funding for non-curative psychological quackery which blows me completely away considering that they now know how to regenerate human hearing, which I understand will not cure all cases of tinnitus.

But just imagine this: What if they found a cure for cancer that cured 80-90% of cancer cases but the cancer orgs like the American Cancer Society refused to talk about it, promote it, or fund it because it didn't cure 100% of cancer cases?

What cures 80-90% tinnitus?

 

[JohnAdams]

What cures 80-90% tinnitus?

I was just saying for instance. I'd think 80-90% of tinnitus is from hearing loss caused by damage to the cochlea, the type of damage that drugs like FX-322 may heal. Am I wrong?

 

[Gl0w0ut]

@Gl0w0ut and @TuxedoCat that is a reasonable and smart idea. The BTA did so with the Tinnitus Hub/Talk fundraiser for Danny's grant. The same model could be used here at Tinnitus Talk if the BTA agreed. The problem is not many donate anymore. At least not enough to make a big difference whether it is the BTA, Tinnitus Talk or a tinnitus research organization.

Well what do you think will help that? I can't give much but I will give what I can.

 

[david c]

What if we made a formal contract with the BTA, stating we could get them funding but it could only be used for biomedical funding. Not meta analyses or psychological treatments but actual neurological treatments.

Definitely an interesting idea but one which would be difficult to enforce. Even when involved in a fundraiser which was specifically for "curative" research the BTA tried to move the goalposts by suggesting projects which "silence" tinnitus - a notorious term used in the sort of psychological therapies research we don't need to see more of. My advice if the BTA did agree to such a contract (and I doubt they will) would be to read the contract small print very carefully.

 

[Watasha]

FYI from personal experience.

When a tinnitus organization such as the ATA decided to drop all programs in 2005 except research for a cure as its main and only objective and mission statement - the organization died off within a year.

They produced something called the Roadmap for a Cure. It failed as did the organization.

@Starthrower Did the ATA give up everything and just do research? Because they currently spend less than 20% of contributions on research now.

I do know that they use the roadmap for a cure to guide their research projects which is most likely why you haven't seen many CBT/TRT studies lately from them, they just spend so dang little money on research as a percentage of their contributions.

 

[JohnAdams]

Part of the problem with trying to cure tinnitus is that tinnitus is a symptom of irregularities or damage to the auditory system. Most of us have tinnitus from hearing loss. Perhaps we should be donating to organizations focused on hearing loss like these guys.

https://hearinghealthfoundation.org/

 

[lymebite]

An excellent organization to consider for donations is Hyperacusis Research. Almost every penny goes directly for research grants to leaders in ear research such as Charlie Liberman of Harvard Medical School. All labor is volunteer, there are no salary costs. There are no office space costs.

https://hyperacusisresearch.org/

https://www.facebook.com/hyperacusisresearch/

 

[Watasha]

An excellent organization to consider for donations is Hyperacusis Research. Almost every penny goes directly for research grants to leaders in ear research such as Charlie Liberman of Harvard Medical School. All labor is volunteer, there are no salary costs. There are no office space costs.

https://hyperacusisresearch.org/

https://www.facebook.com/hyperacusisresearch/

If this is indeed true, this is a model for how charitable organizations should be run as closely as practicable.

 

[lymebite]

If this is indeed true

Hyperacusis Research is a non-profit charity in America classified as 501(c)(3) organization. All these organizations are required by the Internal Revenue Service to provide their financial information each year to anyone who requests it. And for many organizations a request is not even necessary, anyone can obtain the financial statements online at Guidestar.

www.guidestar.org

So, we do not have to speculate about if this is true, all the data about revenues and spending is fully public. Spoiler alert - it is true that about Hyperacusis Research being an all volunteer organization which enables most funds raised to go to research grants. If you pull their statements on Guidestar you will see there are no salaries and no office space. There are some smaller administrative costs such as travel and postage, but other than that our money goes directly to research grants. I go through the financial statements of any charity I might consider for a donation, to see where my money would be going. I would encourage others to do the same.

 

[JohnAdams]

Honestly, if you like what the BTA is doing, give them as much money as you want. I don't think it's going to help the community be cured any faster but whatever. They may eventually feel confident enough in something curative that they will throw their weight behind. Who knows?

 

[Watasha]

Hyperacusis Research is a non-profit charity in America classified as 501(c)(3) organization. All these organizations are required by the Internal Revenue Service to provide their financial information each year to anyone who requests it. And for many organizations a request is not even necessary, anyone can obtain the financial statements online at Guidestar.

www.guidestar.org

So, we do not have to speculate about if this is true, all the data about revenues and spending is fully public. Spoiler alert - it is true that about Hyperacusis Research being an all volunteer organization which enables most funds raised to go to research grants. If you pull their statements on Guidestar you will see there are no salaries and no office space. There are some smaller administrative costs such as travel and postage, but other than that our money goes directly to research grants. I go through the financial statements of any charity I might consider for a donation, to see where my money would be going. I would encourage others to do the same.

@lymebite I wasn't trying to come down on anyone here. My understanding is that Guidestar compiles publicly available IRS filings. These are not necessarily audited. I failed to see several of the characteristics you mentioned disclosed/promoted on their website (only looked briefly) and also did not see any independently audited financial statements. With that said, I qualified my statement with "If true" because I simply was comfortable endorsing all of things mentioned as fact because I haven't been able to get fully comfortable with it in a very limited time.

Perhaps we could reach out to them and see if they undergo an independent audit (being a small organization it may not be likely)? It might not hurt to have some sort of vetting process for many of the organizations related to these conditions where we could disclose key facts about them for research funding purposes. In either case, I appreciate your response and like I said this is a great model for organizations deserved of research dollars.

 

[Gl0w0ut]

Definitely an interesting idea but one which would be difficult to enforce. Even when involved in a fundraiser which was specifically for "curative" research the BTA tried to move the goalposts by suggesting projects which "silence" tinnitus - a notorious term used in the sort of psychological therapies research we don't need to see more of. My advice if the BTA did agree to such a contract (and I doubt they will) would be to read the contract small print very carefully.

The purpose of the contract is to explicitly define what is and isn't acceptable treatment.

 

[Gl0w0ut]

Interesting. We'd have to know a bit more about it to see whether/how we can support. Keep us posted, or PM me and Markku.

Do you think it's possible to try and get another fundraiser going? Like, we'll call it the "You want to suffer the rest of your life? Then donate to help restore silence ya cheap bastard!"

Ok we won't call it exactly that but I kind of want to get something going here. We have to take matters into our own hands it seems. I feel invigorated to try and make a difference.

 

[Hazel]

Do you think it's possible to try and get another fundraiser going? Like, we'll call it the "You want to suffer the rest of your life? Then donate to help restore silence ya cheap bastard!"

Yes, absolutely! Though not sure we'd go with your tag line, LOL. But yeah, we'd need to develop some good marketing materials, a social media strategy, etc.

I'm really in favour of simply reinvigorating the Danny Boy fund, let's not reinvent the wheel. Plus, this was such a grassroots, democratic, patient-driven endeavour, that I really don't see how we could do any better in that regard.

I would propose doing this in the second half of 2019. We at Tinnitus Hub are too swamped at the moment to take on another big project. Plus this requires some careful planning.

What you could already do is try to get a small team together of dedicated folks to run this project. @Ed209 should definitely be part of it, since he initiated the Danny Boy fund. Once there's a team, we can set up a PM and start brainstorming!

 

[JohnAdams]

Yes, absolutely! Though not sure we'd go with your tag line, LOL. But yeah, we'd need to develop some good marketing materials, a social media strategy, etc.

I'm really in favour of simply reinvigorating the Danny Boy fund, let's not reinvent the wheel. Plus, this was such a grassroots, democratic, patient-driven endeavour, that I really don't see how we could do any better in that regard.

I would propose doing this in the second half of 2019. We at Tinnitus Hub are too swamped at the moment to take on another big project. Plus this requires some careful planning.

What you could already do is try to get a small team together of dedicated folks to run this project. @Ed209 should definitely be part of it, since he initiated the Danny Boy fund. Once there's a team, we can set up a PM and start brainstorming!

What, in your opinion and experience, is the best thing to do with donated money? Web ads? Direct funding of research facilities? For instance, if you had a million dollars, pounds, Euros, whatever, to spend on one thing, what would it be?

 

[Watasha]

What, in your opinion and experience, is the best thing to do with donated money? Web ads? Direct funding of research facilities? For instance, if you had a million dollars, pounds, Euros, whatever, to spend on one thing, what would it be?

With a million dollars, I'd recommend an endowment. I think some defined portion should go into marketing the fund for additional donations, but no more than something reasonable say 10% of income/contributions and only after exhausting all efforts without spending money.

 

[another sean]

Part of the problem with trying to cure tinnitus is that tinnitus is a symptom of irregularities or damage to the auditory system. Most of us have tinnitus from hearing loss. Perhaps we should be donating to organizations focused on hearing loss like these guys.

https://hearinghealthfoundation.org/

Damn you beat me to it. I was just about to mention these guys. I've been following their work for the past 2 years now and I just received their Annual Report today. They have at least 8 regenerative research projects being monitored right now.

https://view.publitas.com/p222-4764/hhf-annual-report-fy-2018/page/1

HHF>BTA+ATA

 

[Hazel]

What, in your opinion and experience, is the best thing to do with donated money? Web ads? Direct funding of research facilities? For instance, if you had a million dollars, pounds, Euros, whatever, to spend on one thing, what would it be?

Really good question! I had to give it a long hard think ... I mean, we do the things we do now - this forum, the videos and podcasts, research collaboration, in part because that's what we CAN do with our current limited resources, while hopefully still having an impact. Having a million dollars at your disposal would make it a whole different ball game!

Personally, I'm not sure I would put it directly into one research project. A million dollars is easily spent on just one clinical trial for instance, and if the trial fails, you have exactly NOTHING. But you could fund a lot of fundamental research, i.e. to understand the basic causative mechanisms of tinnitus, so I'd be tempted to do that. But probably even more tempted to fund a big data gathering project, like a biobank. I think we need a lot more big data; and I'm talking extensive data gathering from tens if not hundreds of thousands of individuals at once - unlike all the small scale studies being conducted now. If you can get that kind of data, you might be able to draw all kinds of new insights about different types of tinnitus, causes, auditory problems, co-morbidities, dietary effects, sleep, personal history, neurological symptoms, and many other factors that could lead to whole new pathways for a cure; or rather cures, because I do believe there won't be one cure for everyone, but different cures for different tinnitus sub-types.

I might also be tempted to go the route of lobbying and advocacy, i.e. trying to convince governments and healthcare companies to invest in tinnitus healthcare and treatments. Effective political lobbying takes a lot of time and resources, as well as highly skilled people with extensive knowledge on regulation, healthcare systems, and commercial incentivisation. So it's not something we're equipped to do at the moment. But I do believe if you can play that game well, it might lead to the breakthrough we need.

 

[JohnAdams]

and if the trial fails, you have exactly NOTHING

Even in failure there are lessons to be learned.

If you can get that kind of data, you might be able to draw all kinds of new insights about different types of tinnitus, causes, auditory problems, co-morbidities, dietary effects, sleep, personal history, neurological symptoms, and many other factors that could lead to whole new pathways for a cure; or rather cures,

Agreed.

I might also be tempted to go the route of lobbying and advocacy, i.e. trying to convince governments and healthcare companies to invest in tinnitus healthcare and treatments. Effective political lobbying takes a lot of time and resources, as well as highly skilled people with extensive knowledge on regulation, healthcare systems, and commercial incentivisation. So it's not something we're equipped to do at the moment. But I do believe if you can play that game well, it might lead to the breakthrough we need.

Looks like the team needs expansion and some sugar mommies and daddies that have an interest in this condition.

Funny thing is that the end goal would actually be the destruction of your group and the ATA and BTA because that would mean a solution has been found. That would look great on a resume though.

I'm doing stuff too. We're all in this together.