More About the BTA and Tinnitus

[Ed209]

Dr Mckenna has an extensive and profitable private Harley street practice from TRT/CBT treatments. So before the BTA give Dr Mckenna yet more research money maybe they should start asking him about potential conflicts of interest.

Dr Mckenna has helped loads of people on this forum as well as around the world. In fact, @brownbear credits him with saving his life (he is an ENT) and I've seen many other appraisals of this nature. Again, I'm not entirely sure why you're attacking him either? At a time where there's no treatment or cure (for the objective noise) he is still saving lives. These are professional people, yet I see some really stupid things written on here a lot of the time, like he should be helping people for free. That's not how any medical practice works, unfortunately. Obviously this doesnt just relate to tinnitus either. Any ailment a person can have will cost money if one goes privately. Also, Dr Mckenna works for the NHS.

If we could bottle up all the complaining, and donate that, we'd have millions by now.

 

[Autumnly]

I'll do some digging and see what I can find out and report back.

You're most likely already aware of this video but it's called Dr. Robert Aaron Levine's Tinnitus Tutorial on YouTube. It explains why benzodiazepines such as clonazepam could help with tinnitus and it's only 15 minutes long.

• at 11:52 he shows three studies that show that benzodiazepines have quieted tinnitus in about 75% of patients
• the three benzos used in the studies: Alprazolam (Xanax), Bromazepam (Lexotan) and Clonazepam (Klonopin)

 

[annV]

There's a reason why benzos haven't been studied more in treating tinnitus, they cause tolerance and dependence, doctors don't want to prescribe them anymore.

Benzos incl Clonazepam is not a viable tinnitus treatment.

 

[David]

There's a reason why benzos haven't been studied more in treating tinnitus, they cause tolerance and dependence, doctors don't want to prescribe them anymore.

Benzos incl Clonazepam is not a viable tinnitus treatment.

I was wondering if the safety profile would be an issue, looking at the side effects.

 

[glynis]

The medications have saved the lives of many people although they are highly addictive, long term causing more problems emotionally when coming down off them and also increased tinnitus.

Short term or taken on really hard days they are ok but a benzo addiction is not what severe tinnitus sufferers could cope with. I know as mine is severe 24/7 in both ears.

We need a medication that won't cause more problems when on it long term, like an epileptic medication.

love glynis

 

[Autumnly]

Again, I'm not entirely sure why you're attacking him either? At a time where there's no treatment or cure (for the objective noise) he is still saving lives.

"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. Of course people are going to think that tinnitus doesn't need a treatment or a cure if everyone just needs CBT.
The problem is for many people living well with tinnitus truly comes down to someone's attitude. If the most effective treatment for a problem is CBT people might not necessarily think of it as a mental health issue but an issue that mostly comes down to mental health if that makes sense.

Even on TT, there are so many posts by other people with tinnitus who are convinced that:

• loudness can be controlled and only negative people have loud tinnitus,
• through CBT/TRT everyone can learn not to hear their tinnitus anymore (why would you need a cure then?)
• and my favorite if you struggle with loud tinnitus it's just due to your mental health (because loudness actually doesn't matter and tinnitus can't be debilitating, just like there's no difference between living with mild or severe chronic pain).

I could easily quote some users' posts here.

CBT currently is the most effective treatment as we have literally nothing else, not one medical treatment (pill, injection, surgery, device) and some people will need more than CBT to be able to live normally again but no one says this last part. I'm not saying CBT can't help but no one says that it won't work for everyone and we need to make this clear.

After the BTA posted McKenna's mindfulness study even more articles came out talking about how "groundbreaking" and "life-changing" this approach is. Understandably, those articles which were not written by the BTA wanted catchy headlines but still, those words will stay in the minds of other people. No one has the guts to say in those articles that there are still millions of people where no amount of psychotherapy is going to allow them to function as well as they used to.

As a consequence, most people don't see tinnitus as something that could be debilitating and that urgently needs a cure or medical treatment. Why look for a treatment if mindfulness allows "everyone" to live normally? Again, this is not what the BTA said about mindfulness but it's definitely the image other articles are perpetuating now due to this study.

I think we underestimate how many people, whether they have tinnitus or not, don't see tinnitus as a serious condition. Why would the majority of tinnitus patients want to donate if they don't have a problem and don't see how anyone else could struggle with it?

If the type of tinnitus doesn't matter then why should we look for a cure or treatment? Everyone just needs a bit of mindfulness.

 

[David]

Hi @Autumnly a really interesting post.

CBT isn't for everyone and isn't a cure all as you rightly state. I'm not aware of any organisation stating it is? It certainly cannot help everyone. Even for those it could, access is a major issue. If as the BTA we thought there was a cure all and were confident in it, we'd be shouting it from the rooftops. As you state it's probably the best of what we've got right now.

I think the reality is we're not looking for a cure for tinnitus, we're looking for cures. We may already have some, it's just that the research isn't sophisticated enough to identify them. I believe we need to subtype tinnitus much more effectively then is currently the case, then see which of the subtypes benefit most from various interventions, whatever they are. The challenge then is to how to effectively subtype. Tinnitus is so heterogeneous there's a lot of different ways you could address it.

As said previously to really move forward we need better measures too, ideally an objective measure, to really progress.

 

[glynis]

@David,
I hope our busy forum doesn't scare you off... very different than HealthUnlocked...lots of love.

I agree subtypes need more looking into as it will never be a one cure to fix all.

I think hearing loss and tinnitus might be the first breakthrough and I hope one for Meniere's as I have it.

love glynis

 

[Ed209]

Because of this statement. It's ridiculous and insulting. Loudness, intrusiveness and stability matter immensely.

Of course it matters, but incidentally brownbear has severe tinnitus that made him suicidal and he credits Dr McKenna with saving his life.

The real problem is the overwhelming lack of engagement from the tinnitus community. If more people donated, or contributed in other ways, it would be taken a lot more seriously. Can't you all see this? Am I on my own here?

Doing these fundraisers has opened my eyes. Seeing the numbers and the stats first hand is both appalling and depressing at the same time. The way some of you talk is like it's as easy as waving a magic wand and having millions go to research without lifting a finger. It's far from an easy task. We can't even raise £5k for Danny's Fund and I estimate at least 50,000 unique people have seen it. Only around a fiftieth could even be bothered to click on the link; that's how bad it is. And similarly, only 47 people could be bothered (out of around 25,000) to donate to the very platform that we are all using today; and let's not forget all the work Tinnitus Hub do as well.

The total unique views to the GoFundMe campaign is currently at 8931. A small slice of the overall exposure that this has had. I hope this highlights how hard it is to raise money for research.

That's realistically what we're up against. The stats show that the majority don't care enough to do anything about it which reflects badly on us all. Sorry for my French here, but it's time some of you pull your heads out of your arses and smell the roses. The tinnitus community needs more proactiveness, more fundraising, and less daydreaming.

 

[glynis]

@Ed209,
love you to bits, you say what I'm thinking but I don't think it will make a difference... love glynis

@David,
is it too late to do a live fundraiser at the Expo...?

 

[david c]

They aren't. All of the studies the BTA have funded would be into treatments viable within the NHS.

Completely unconvincing as an argument. We all know that while the NHS provides a skeleton therapy service for tinnitus (with waiting lists of nearly a year in many cases)- the big money is in private practice.

These studies are all about monetising tinnitus for Psychotherapy treatments in exactly the same way the discredited ME clinical trial published in the Lancet was.

So, David Stockdale: Have you asked Laurence Mckenna about his private Harley Street practice, which you claimed not to know about even though the simplest Google search would have given you the information? - How much money does he make from his Psychotherapy treatments?

Have you asked the Tinnitus CBT/Mindfulness/Psychotherapy Counsellors who you've invited to your tinnitus open day - all of whom have paid for access to tinnitus sufferers - how much they make out of tinnitus?

Stop trying to deny this is all about helping the huge private CBT/Mindfulness/Psychotherapy market get its claws into another group of vulnerable patients.

 

[glynis]

@David @Markku @Steve,

Is a united tinnitus research fund doable with any others wanting to join.

Tinnitus Talk, Tinnitus Hub, American Tinnitus Association, British Tinnitus Association, Action on Hearing etc?

Just brainstorming,
love glynis

 

[valeri]

This is what "saved" from severe tinnitus is like:

 

[valeri]

Dr Mckenna has helped loads of people on this forum as well as around the world. In fact, @brownbear credits him with saving his life (he is an ENT) and I've seen many other appraisals of this nature. Again, I'm not entirely sure why you're attacking him either? At a time where there's no treatment or cure (for the objective noise) he is still saving lives

I hope this highlights how hard it is to raise money for research.

Why would anyone donate to something that already has "life saving" treatment?

You are too smart not to see how contradicting this is!

 

[GregCA]

Of course it matters, but incidentally brownbear has severe tinnitus that made him suicidal and he credits Dr McKenna with saving his life.

Perhaps the issue is that it's not enough to just save a life. Yes, he still lives, but he may be surviving rather than living a fulfilling life. I don't want to speak for him, but I can speak for myself. I have used CBT for my T and it has helped me to some extent with panic and anxiety, but I wouldn't say that I'm OK: I'm not living life, I'm just surviving and dealing with T day in and day out, as are many other sufferers. We handle it, we cope with it. Some of us more successfully than others. But our quality of life is degraded, sometimes to the point of enabling people to cross the unthinkable threshold. You are the best person to know this first hand given your involvement in a recent fundraising.

If the world thinks that there is a treatment out there that is "saving our lives", they may relate it to other illnesses where saving your life means you go back to living life. For us, saving our lives means ending in a completely different state.

This confusion can have heavy implications on empathy and funding: if there's already something that saves your life, you're good!

 

[Ed209]

Why would anyone donate to something that already has "life saving" treatment?

Because we all know how bad it can be!? I've habituated and have donated to various sources of research because I still think a treatment or a cure is absolutely necessary. I'm completely aware that not all people will habituate, so more needs to be done. Unfortunately, I'm in the tiniest minority. The stats tell me, and overwhelming so, that most sufferers don't care enough to act. And when I say don't care, I mean hardly anyone can be bothered to even read the campaign link (less than a fiftieth who were exposed to it) let alone help by donating or doing their own fundraiser. Even a like or a share would be awesome but even that's too difficult.

We can't continually blame other tinnitus charities. We need to blame ourselves for being too apathetic. If I didn't have a clue about tinnitus I'd see Campaigns like these - and believe me I've studied loads of them - and think that it can't be a big deal because hardly anyone donates towards them, and yet there are millions who have it really bad. Why aren't we all rallying round, on a united front?

Instead, we sit around on here, complaining, which will make absolutely no impact at all. It's time everybody wakes up if we want to see any real changes, and soon. We can raise our own awareness across multiple platforms but we don't. We can't have it both ways.

 

[Autumnly]

Because we all know how bad it can be!?

Most people don't. Just look at posts by other users on here who have tinnitus. So many truly don't think it's a serious condition.

Why donate if only negative, angry people have loud tinnitus?

• They forget that the mental struggle is really what keeps T intrusive and loud.

Why donate if everyone learns not to hear their tinnitus anymore?

• Even for those whose T stays, they learn to habituate to it eventually which means that they are unaware of their T most of the time and that is as good as it gets.

• Then with the sufferer going back to living normally and doing much to distract from paying attention to T, T will slowly sink into the background making habituation possible in due time.

Why donate if loudness doesn't matter and people choose to suffer?

• Clearly loudness is a factor but if 1 person has loud T and is very distressed and another person with similar T isn't bothered by it then mental health is a large part of it.

• There are a ton of people with worse tinnitus than you that are doing fine and living a happy life.

"CBT is the most effective treatment" is hurting us greatly because when something comes down to mental health you need a therapist, not a treatment or cure. Most people with tinnitus don't care because they don't understand how bad it can be.

Unfortunately, I'm in the tiniest minority. The stats tell me, and overwhelming so, that most sufferers don't care enough to act.

I'd say severe sufferers care and I bet many of them have donated before but most people with tinnitus truly don't care. But yes, you are in the minority.

We can't continually blame other tinnitus charities.

They are supposed to represent us and speak for us, we should be allowed to criticise them. The BTA said it doesn't matter whether tinnitus is mild or profound - why would anyone want to donate to such a condition? If the loudness doesn't matter then only the mentally weak struggle with it and just need a therapist.

 

[Ed209]

Perhaps the issue is that it's not enough to just save a life. Yes, he still lives, but he may be surviving rather than living a fulfilling life. I don't want to speak for him, but I can speak for myself. I have used CBT for my T and it has helped me to some extent with panic and anxiety, but I wouldn't say that I'm OK: I'm not living life, I'm just surviving and dealing with T day in and day out, as are many other sufferers. We handle it, we cope with it. Some of us more successfully than others. But our quality of life is degraded, sometimes to the point of enabling people to cross the unthinkable threshold. You are the best person to know this first hand given your involvement in a recent fundraising.

Hi Greg, I've already explained this and completely agree. However, we are in the tiniest minority. If people acted on your words we might actually get somewhere but this is far from the case as I've explained in my other posts. I've all but given up because it's like chasing ones own tail. The tinnitus community do not help themselves at all and are far too preoccupied with what other charities are doing whilst simultaneously doing nothing.

I wish we could change this but I can't see how? I've always advocated the need for a treatment or a cure. For starters, I could reignite my live music career again which would be awesome. However, at the same time, we have to be pragmatic and realise that people are struggling today, so we can't universally slate all help that is currently available. If it can save a life until a treatment is found, then great. That's my opinion.

I'll finish by restating that we need a cure! I just wish the community would back their own convictions for once.

 

[Ed209]

Most people don't. Just look at posts by other users on here who have tinnitus. So many truly don't think it's a serious condition.

Why are we all here then and across the net? I disagree.

Why donate if everyone learns not to hear their tinnitus anymore?

I do. That's still not a valid reason and further demonstrates the lack of willingness to help if you believe this to be true.

The real problem from my experience is that people are far too apathetic. When clicking a Campaign link is not worth ones time then you know it's bad. Why can't we all donate £1-£5? Why aren't more of us compounding this by doing our own fundraisers and combining the total? Where's all the activism to spread the awareness? Most post loads of messages here but that's where it ends. Unfortunately, this doesn't help the wider tinnitus community and/or people that haven't acquired tinnitus yet. We could be lobbying governments and spreading the word via social media, school councils, and other establishments. Real efforts that make a difference and take the cause forwards.

If none of you can see this then I give up as it's a lost cause. We have to help ourselves.

 

[glynis]

Donated again

 

[Ed209]

I'd say severe sufferers care and I bet many of them have donated before but most people with tinnitus truly don't care

I don't want to keep posting the same thing so I'll make this my last. The evidence suggests that severe sufferers are no more likely to donate than anyone else. In fact, I'll go further and say from my experience, a lot of the worst affected haven't contributed anything and I could go further and say some have actually posted to sabotage any effort which is directed at helping them. It's a real mystery to me.

They are supposed to represent us and speak for us, we should be allowed to criticise them. The BTA said it doesn't matter whether tinnitus is mild or profound - why would anyone want to donate to such a condition? If the loudness doesn't matter then only the mentally weak struggle with it and just need a therapist.

Again, because we are the sufferers and we should be taking this into our own hands. The BTA doesn't have to exist just like this forum doesn't have to either. They do because people took their time to get involved with the cause. We can't pass all responsibility onto other organisations; sometimes you have to take things into your own hands. If some of you disagree with what tinnitus charities are doing then do your own work and you will soon realise the enormity of the task.

Find a researcher/research team, and fundraise for them directly. You do not have to be rich to do this! All it takes is time and A LOT of effort. Combine our efforts and we could get a hell of a lot done.

 

[Ed209]

Perhaps the issue is that it's not enough to just save a life. Yes, he still lives, but he may be surviving rather than living a fulfilling life

To further add to this I'd say a current treatment option saved his life, but we are striving to find a cure to do exactly that: improve his quality of life. We can and should be doing both in my opinion and this is something I've always said. We shouldn't be looking at it in such a binary way.

If more people put as much effort into real advocacy work as they do posting on here then we'd certainly be gaining more traction. However, I don't think this will ever happen as it's far easier to criticise others than it is to get involved. That's human nature by and large.

If the theory is that people aren't willing to contribute because most others don't then it's a classic stalemate situation. You can't make an omelette without breaking a few eggs, but if most of the tinnitus community aren't willing, or prepared, to break some eggs then we diminish our chances of seeing the omelette.

 

[valeri]

@Ed209,

It seems to me that we are running in circles here.

I'm not sure why is it so hard for you to understand that by saying McKenna "saved" many lives it's actually not doing us any favours!

And this is exactly what ATA and BTA have been saying for decades: mind over matter.

Please read again what @Autumnly wrote!

If you didn't have tinnitus and saw those sort of messages would you ever think it's something serious? Would you ever think it's something that can push people into suicide!

Of course not because all you need is to start thinking happy thoughts and life is good again.

And if, for some reason, you can't think happy thoughts than it's your fault, nothing to do with tinnitus!

I understand that currently we don't have much more than those band aid "treatments" but our lovely associations have not moved forward one bit since they've been established!

They just keep recycling the same stuff, year in year out.... with absolutely nothing new!

And it shouldn't be like that! Not if they had our interests in mind!

Also it's not fair to call people (me) saboteurs just because we (I) don't want to donate to those working against us!

Apart from that, if you ever decide to do fundraising for a valid research done by qualified researcher (Prof Tzounopoulos for example) count me in, not just for money but any other help!

 

[Ed209]

I'm not sure why is it so hard for you to understand that by saying McKenna "saved" many lives it's actually not doing us any favours!

I'm just stating some facts. Saving a life is not the same as improving someone's quality of life; they are totally separate things. I would argue that in context it absolutely does help. How can helping someone off the ledge be a bad thing? We should not confuse the two. If it means a father gets to see his children grow up, and they get to keep their dad (albeit he might still be suffering, but not anywhere near as bad) then something good has been achieved.

If you didn't have tinnitus and saw those sort of messages would you ever think it's something serious? Would you ever think it's something that can push people into suicide!

I wouldn't see those messages though? What non-tinnitus sufferer comes on here? In fact, I would likely think it isn't so serious judging from the serious lack of donations and inaction from the community. I'm pretty astute, however, and I never take things at face value. If I wanted to find out more about tinnitus (as a non-sufferer) it wouldn't be hard to find all the numerous suicide reports and all the various accounts of how debilitating it can be. A little bit of research can show anyone how devastating it can be. So yea, I would think it's something that can push people to suicide and if I was a non-sufferer and someone asked me for a donation it's highly likely I would give something. I still don't understand what's stopping the vast majority of the community. Less than 0.01% have donated and only a fiftieth have even bothered to look at the campaign, but everyone is still blaming the BTA. The same is true for liking and sharing these things; hardly anybody does! What are we expecting to happen when none of us can be bothered to help our own condition! I'm sure the rest of the world sees how devastating this is when I put out paid ads targeting people who have it (as well as all the other tinnitus organisations who have shared it) and we can barely get 10 likes. The ATA achieved 3, and most others aren't much better. The shares are also dismal when you reflect upon the numbers that have been exposed to it. I'm not sure what else I can say because it's infuriatingly simple: if you ask for help from tinnitus sufferers you won't get any. So the fact remains that most tinnitus sufferers are not prepared to help themselves. Don't forget the incredibly high 47 donations we received for the Tinnitus Talk fundraiser; we couldn't even hit 50, the target number and that's with prize money involved. Doesn't anybody value the work Tinnitus Hub does either? When are we all going to wake up and be accountable? The world owes us nothing. We have to affect these changes because nobody else will. No tinnitus charity can give money to advanced research when they aren't receiving anywhere near enough in the way of donations!

Of course not because all you need is to start thinking happy thoughts and life is good again.

There's actually a lot of truth to this. We are what we think and our thoughts control everything we experience in our life from our mood to our behaviour. Our thoughts also control how our brain operates and how our CNS and endocrine system react. This still doesn't mean we shouldn't be helping our own charitable causes because we are all different and as we are all well aware, some really struggle to control their thoughts and emotions with a constant racket in their head and you can't blame them. I am trying to help those people as best as I can but it's proving to be near impossible.

I understand that currently we don't have much more than those band aid "treatments" but our lovely associations have not moved forward one bit since they've been established!

But you're back to focusing on them and not what you can do. This is the problem.

Also it's not fair to call people (me) saboteurs just because we (I) don't want to donate to those working against us!

But objectively speaking, what did you achieve other than to potentially encourage others not to donate to a ring-fenced fund designated for research? If only people would click the link and read what we're trying to achieve and stop dragging the past up. We need to be more forward thinking.

Apart from that, if you ever decide to do fundraising for a valid research done by qualified researcher (Prof Tzounopoulos for example) count me in, not just for money but any other help!

Who's stopping anybody from doing this? This is what annoys me. What is everybody waiting for? Also, Danny's Fund could be donated to Prof Tzounopoulos; this has already been discussed. All donors will be democratically involved in deciding where the funds should go and that could very well be to his work. I set up the fund through gofundme because it was the easiest way to raise money across multiple countries. My vision was always to have this money donated to a research team but I was hoping more would be willing to donate. Without the help of Tinnitus Hub and the BTA we'd really be struggling so I can't thank them enough.

 

[Hazel]

Why does tinnitus advocacy have to focus exclusively on a cure? Why would we have to choose between promoting a cure or 'interim' treatments? They're not mutually exclusive, and we need them both. To choose one over the other would inevitably mean abandoning a certain group of sufferers.

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.

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.

I think @Contrast makes the most sensible arguments here. If you don't agree with the BTA/ATA approach, it's fine to raise that and discuss in a rational manner. But the aggressive tone of some members above is simply counterproductive and won't convince anyone to change their minds, nor does it get us any closer to a cure.

 

[Ed209]

Why does tinnitus advocacy have to focus exclusively on a cure? Why would we have to chose between promoting a cure or 'interim' treatments? They're not mutually exclusive, and we need them both.

Exactly, well said Hazel. I'll leave you all to discuss this as I can see I'm fighting a losing battle. We all want the same things deep down so we should fight for them.

 

[glynis]

All donors will be democratically involved with where the funds will be going and that could very well be to his work. I set up the fund through gofundme because it was the easiest way to raise money across multiple countries. My vision was always to have this money donated to a research team but I was hoping more would be willing to donate. Without the help of Tinnitus Hub and the BTA we'd really be struggling so I can't thank them enough

I think members have forgotten the above. It makes a big difference as they will have a say where the raised funds in @Danny Boy's memory will go to.

Tinnitus is a silent condition that others cannot hear. A lot of people can cope and adapt and get on with their lives.

I also know someone with mild tinnitus can be in the same situation as someone with severe tinnitus.

Tinnitus needs funds for helping sufferers as does Tinnitus Talk to operate the forum that is free for members and visitors to use but has costs to run it and the endless free time given up to moderate it.

A small donation for that alone is gratefully received.

Tinnitus Hub (the non-profit operator of Tinnitus Talk) works more towards connecting patients with researchers (attending conferences etc.) and has a Tinnitus Hub Facebook group.

BTA are amazing and if you truly understood what they were about and the staff and volunteers, what they provide and the hard work that goes into the association and Quiet magazine and phone line and support groups you would see funds are needed just for that alone.

This does not stop money being put aside for research but the fund needs more donations and that is like with all other charities... research costs money.

Who knows when a cure will be found due to the many subcategories but ongoing research into them is taking place NOW.

Hearing loss and tinnitus
Inner ear conditions and tinnitus
Infections
Brain activity
Tumours and treatment
Stress and anxiety
Brain injury

The list is endless but we all have to hope that a breakthrough will happen and all the subcategories get the individual treatment and cure.

We can help change the future for our children, grandchildren, great grandchildren. We can be proud donating towards research or just volunteering our free time to help with awareness or supporting Tinnitus Talk, Tinnitus Hub, BTA, ATA or others because it is all for the same goal.

I for one will be shouting from the rooftops if one subcategory finds a cure and would be so proud I played some part in making it happen no matter how big or small.

Together we can stand and fight for our right for a treatment and cure. The alternative is to just let it slip away.

Donate, get involved volunteering your time, whatever you can do can only be a good thing. Don't just put up with the phrase "Learn to Live With It." It is mental torture.

Thanks for reading,
as always love glynis xxx

 

[david c]

They are supposed to represent us and speak for us, we should be allowed to criticise them. The BTA said it doesn't matter whether tinnitus is mild or profound - why would anyone want to donate to such a condition.

Absolutely right. To be honest any attempt to criticise the BTA on Tinnitus Talk does tend to get shouted down and in some cases simply censored. My first attempt to publish the post that started this thread was deleted and I was told that "accusatory posts against BTA or its personnel are not welcome" when my post was clearly an intelligent critique of the BTA's funding decisions.

But this isn't new - the ME/Chronic Fatigue sufferers who dared to challenge the Medical establishment and find the truth out about the usefulness of CBT for ME (it wasn't helpful) faced the same attempts to silence them, the same hostility, the same accusations of negative thinking and attempts to turn any discussion into fund-raising for research which they didn't agree with and which turned out to be fundamentally flawed.

But we won't be silenced. 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. 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.

Maybe before he and the BTA give Dr Mckenna yet more money for yet another CBT/Mindfulness study - money which could be spent on so many more worthwhile, under-researched areas of tinnitus research - he can ask Dr Mckenna these questions.

 

[Tinnitus Talk]

My first attempt to publish the post that started this thread was deleted and I was told that "accusatory posts against BTA or its personnel are not welcome" when my post was clearly an intelligent critique of the BTA's funding decisions.

Your post was deleted from the Talking Tinnitus thread; at our discretion we decided to keep that thread on-topic, with a focus on our presence at the Expo and the overall events and happenings surrounding the Expo.

We didn't think an endless argument about BTA and its personnel would have served the thread.

If we wanted to censor this discussion, this thread you started afterwards would already be gone and you banned.

We want to keep an open atmosphere for opinions, which we mostly have had good success with.

Peace.

The staff

 

[david c]

Your post was deleted from the Talking Tinnitus thread; at our discretion we decided to keep that thread on-topic, with a focus on our presence at the Expo The staff

Yes it was a clear attempt to prevent criticism of the BTA. And let's emphasise - there was no suggestion when you deleted my post that it would be more appropriate on another thread. 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. Unfortunately for you I had.