"That Buzzing That Never Goes Away" — Article in The Times

@Ed209 to me is one of the more genuine people on here, you don’t have agree with his methods/views etc or anybody's on Tinnitus Talk but he is always here for people trying to help them.

The work he’s put in regarding the fundraiser and trying to get awareness across has been inspiring. I have nothing but respect for the dude.

 

@Ed209,
You are such a special person and the support you give to members is outstanding on and off the forum.

What you have done for Daniel Ballinger is amazing and he lives on in all of us (contributors) with giving someone a grant to help them work towards a better future for tinnitus and hyperacusis sufferers...

You're one in a million Ed...

Love you millions.

love glynis

 

I understand, David. I’m not going to force an opinion on you as I’ve always said people should speak their mind. It’s more productive and it beats patting each other on the back all day.

All I’m guilty of is holding a mirror up at the tinnitus community. It’s not my fault if people don’t like what they see.

 

Of course tinnitus sufferers wouldn't be the only sufferers from a medical condition who have attacked a lot of the management strategies research - such as Mindfulness and CBT - being done apparently on their behalf.

ME sufferers did exactly the same. Guess what? They were right. The research they were attacking had falsified data and researchers who had undeclared conflicts of interest. Not that it was easy for the ME sufferers to prove it - they had to go to court to force disclosure of data.

But the result was exactly the opposite from the one you are predicting. Far from scaring researchers away, clearing away the dodgy management strategies research created a space for the real bio-medical research to take place.

Result? ME sufferers have finally made progress in achieving an understanding of their condition. Only when tinnitus sufferers do the same will we make progress.

 

Which means absolutely zero for the field of tinnitus, it is related to a group of researchers in a different field and not tied to those researching tinnitus. Unless you have some special inside information?

I do not understand why you insist on posting the same thing over and over and over. Everyone has seen it already, you are citing one area and one case. Is this somehow your proof that all mind based practices are a con?

Your assertions seem to be that it's all pointless. As has already been pointed out, mindfulness is a form of neural plasticity. Tinnitus is thought of as maladaptive plasticity. Why in your opinion can it not work - for some?

If you have a different tinnitus theory please share it and explain why training to rewire the brain and force plasticity cannot work?

 

Why not? Shouldn't we try to learn from what has worked - and what hasn't worked - for other health conditions - particularly little understood conditions, particularly those which have been successful in making progress in terms of research.

Not so much a con, just of very limited use compared with the amount of research funding that they have been eating up from tinnitus charities. Cutting back on endless, repetitive research on CBT/MCBT etc will allow new bio-medical research to emerge.

 

Oh well, I really, really, really tried to ignore you guys and it was easy until I saw this. Steve, you're a nice guy, talented and hard worker, but sorry you got to me with this one. I'd be willing to bet there are many similarities and differences between tinnitus and ME that would be worth exploring. In fact, near the end of my last clinic appointment, which was at a teaching hospital, I was able to ask the attending physician (the senior guy in the group), the resident physician (physician in specialty training) and a medical student, who were all in the room with me, if there was any path for them to feed back to their professional organizations and to researchers that they need effective treatments for their tinnitus patients. The short answer was no, but one thing led to another and at one point, the attending physician said to me, without any prompt from me, that tinnitus patients are often given short shrift because, like patients with fibromyalgia/ME, they are misunderstood by the medical community. The way around that, he thought, was by raising awareness among physicians and other medical professionals. Of course I immediately wondered if he had been visiting Tinnitus Talk!

Case studies like this are used all the time in business. My husband teaches finance to graduate students and case studies are used routinely and competitively between teams of students. This is the stuff you can't learn from a text book. Why don't you guys start a thread where ME and tinnitus can be compared so every other thread will not degenerate into an argument about it ?

I've said my 2 cents worth so I think I'll go back to making dinner and ignoring this.

TC

 

@david c the fact that you are making libelous statements regarding, in particular, @Ed209's fundraiser in Danny's name and the outcome for the donations collected not being used as intended. This is wrong. The funds will go towards exactly what we voted on.

Would you like to name those who you refer to in your post?

 

Apologies I think my irritation spilled over, I get tired of reading the same thing repeated ad infinitum. The reason I say that it means zero is that there has been nothing presented by David C to show why there may or could be comparisons. The assertion is that because an association for a different disorder has found irregularities in some mindfulness trial or trials then tinnitus must be the same. And by that reasoning mindfulness doesn't work.

If we are talking about maladaptive plasticity then I need to understand why a treatment avenue that aims to change the brains response by forging new neural pathways, is not a valid treatment option.

I welcome debate, I'm happy to admit and be shouted down if I am wrong. What I dislike is when something is effectively spammed all over the place. This creates the impression it must be true by sheer weight, people read it and start to believe it, then the true research that happens becomes disregarded or discredited. Not by diligence but by rumour and speculation.

 

Show me the parallels in the diagnosis and why it holds true for tinnitus.

There is already some focus on biomedical research, the difference is that it costs a hell of a lot of money and the reality is that hardly anyone contributes to tinnitus (see the charity incomes and the contributions to the Daniel fund on TT) so there is not a big pot of money available.

If you take the time to look at the BTA cure map and read their thoughts you will see that they agree that enough research has gone into mindfulness. TRI and the TINNET group also acknowledge that this is the area with most research, so other areas need to progress.

What you are confirming is that BTA are correct in their approach. They are moving the focus away from management and into curative research. Bio-medical can only be pushed forward if big funders are brought on board. The BTA as part of the cure map have exactly that priority.

They are a prime example of an organisation that have reviewed where they are and are learning from experience. They do not have the cure hidden from us, they are committed to finding it.

 

@Ed209 I think it's partly about neuropeptides.
I was finally able to live a normal life after my first onset of tinnitus from syringing. My tinnitus settled from very severe to moderate severe at year four after I was finally able to develop great inverse thought. I then lived a normal life where I hardly never noticed my tinnitus until somatic tinnitus came along with severe mouth nerve pain.

https://www.thoughtco.com/healing-thoughts-and-visualiziation-1732483

 

Hi,

I don't really want to get drawn into the same debate again... but here I am!

I'm not sure that most of the research money does get spent on CBT, etc. I don't think there are as many CBT trials as is widely perceived and secondly they're cheap, so don't take up a huge amount of funding. In our recent research review, Dr Schlee presents the breakdown of the papers included on the recent Frontiers tinnitus topic (see below). Source: https://www.tinnitus.org.uk/2018-at...tus-heterogeneity-echoes-from-the-social-buzz

To directly quote the article assessing the breakdown;

"The majority of the articles published addressed aspects of tinnitus treatment (n=25; 35%, Figure 1). The majority of these were related to sound therapy treatments and cochlear implants (20% and 16% respectively). Studies investigating co-occurring conditions were also high in number (14%). Neuronal mechanisms, assessment methods and animal models accounted for nearly 10% each. Three articles addressed the effects of combined therapies, such as Cognitive Behavior Therapy (CBT) coupled with repetitive Transcranial Magnetic Stimulation (rTMS). The remainder concerned a wide range of novel treatment approaches such as Acoustic Coordinated Reset Neuromodulation®, electric stimulation, neurofeedback, physical therapy, rTMS, and vagus nerve stimulation."​

One of my theories about why CBT, etc trials are more noticeable is because they are easy to understand and therefore easy for mainstream media to disseminate. Basic science (e.g. Will Sedley's research) is harder to understand, therefore harder to disseminate and in a way less of a story as it doesn't lead to a treatment available 'now'.

Another factor is many drugs trials are never written up so we never publically know the results.



Project Idea: that could easily be done to prove or disprove my hypothesis and one that could easily be done by the Tinnitus Talk community is to categorise and count the number (and value?) of research projects (maybe using the cure map to categorise) and see where they all fit. Would give the evidence for a great campaigning platform if what you find is that the research is skewed to any particular area - including CBT. Would need to think carefully about the methodology (happy to discuss this further) for doing so but may well give the evidence - or demonstrate that there's not as many CBT trials as thought. Either way it's a win, either there are a lot of CBT trials and you have the evidence to back this, or there isn't and can be reassured that the field is much more diverse than that.

I understand the cynicism towards the CBT trials, I have my own cynicism of some regions of tinnitus research too (which I'll keep to myself)!

@Steve and @Hazel's points here are entirely valid. We need to encourage more researchers from all disciplines to engage in tinnitus research, we need to be an open and welcoming community that supports them - as well as supporting and respecting those that have given their careers and time to work in an area that is much undervalued and under researched. If it looks as though that doesn't happen, it is easy for talented researchers to look to other fields that are more supportive.

This doesn't exclude constructive criticism - but I believe any criticism needs to be that. An evidence based view that there is too much CBT research and the tinnitus research community needs to reprioritise would be just that IMO. Build the case! Happy to help.

 

It all comes down to money. Biomedical research costs millions, so ultimately, we need more donations and/or the backing of some big institutions.

It’s easy to criticise from the sidelines but so much harder to take action and do something about it. If you want to see a cure or more effective treatments, instead of complaining, help make it happen. If the BTA decided to give up tomorrow, would it improve our situation?

If people put as much effort into campaigning for change as they did attacking the BTA, and others, we might actually get somewhere. It’s such a self-destructive community.

 

@TuxedoCat Exactly. Thank you for posting all that I quoted you. Tinnitus patients are misunderstood by the medical community. The way around it is to raise awareness among physicians and other medical professionals. This is one my posting themes here, along with awareness for those that can't afford hearing aides and mouth guards. With my severe conditions, I try hard to offer some treatment suggestions for ones to consider discussing with their doctors in an attempt to narrow misunderstanding between patient and doctor.

 

I’ve tried to make a mark, in this respect, by telling all the medical professionals I know to share Danny’s Campaign across their networks. I also wanted to raise their awareness of the condition, which I think I had some success with, as I got many of them talking and asking questions. It’s especially impactful because I have it myself. Some of these people are high level, including a clinical lead endocrinologist, various consultants covering different disciplines, loads of GPs, and a few dentists.

I’ve tried to pursue every avenue that can help, even though the chances of making an impact are slim, I did it anyway.

 

This does happen. Example of what's happening on this today;
- BTA has a stand at the Royal College of GP's Annual Conference - promoting how GP's can support tinnitus patients (and importantly when to refer on)
- BTA launching a campaign across social media called #HearUsOut targetting GP's - everyone here can get involved by sharing messages on social media about what happened when you saw your GP / primary care physician. Both positive and negative experience and we'll be sharing these and collating them.
- Dr Baguley (our President but also Professor of Hearing Sciences at the University of Nottingham) speaking about tinnitus and ototoxicity at the Nottingham Cancer Conference.

This is always going on, just doesn't necessarily get shouted about.

Sure people will disagree with what we're doing or some of the messaging, but we're trying to raise awareness.

 

I also saw you on the news last year, David, promoting the message that there needs to be more awareness at GP level. I hope you don’t mind me posting this, but I believe it shows that you care.

British Tinnitus Association - BBC Interview -...

 

I honestly can’t watch this. Here we have a ‘sufferer’ who doesnt seem to be actually suffering at all. And @David saying in response to is there a cure? ..... ‘There are management techniques that can make the tinnitus lessen.’

WTF?!! You just got set up to smash one out the park and massively raise awareness of how desperately this needs a cure and the best you could come up with was some watered down coping drivel.

I’m sorry it’s like the boss of shelter telling people being homeless is manageable by having a nice sleeping bag.

How about next time you say.......‘No there’s no cure and we desperately need to raise funds to find one as thousands of people are literally being tortured by this day in day out and many people will end up killing themselves because it gets so bad....and it can happen to anyone at any moment.’

 

Following.

 

The biggest paradox ever!

How can something ever be taken seriously, not only by the medical profession but people in general when they (ATA/BTA) keep saying it’s no big deal and there are techniques to make it better!

@David
It’s probably better not to say anything that keeps adding more salt to the wounds of us whose lives have literally been destroyed by tinnitus!

It’s shameful and irrespective and we should not be treated this way!

 

You missed the point completely, Bam. There are ways of calming the nervous system down for most people to cope, and that’s the best we have as there is NO CURE. There is no benefit in creating hysteria amongst sufferers; all that would do is potentially worsen a lot of people’s tinnitus. David Stockdale is not Gandalf, although I’m sure he wishes he was!

You have no idea what that man has been through at all, and it’s incredibly presumptious to assume you know all about his life from a two minute clip. If I was on there I’d be calm and collected too, but for a long long time I was in suicidal hell. I was in the stage you and many others are now. One thing I know for sure is that the worst message you could send out is one of panic, and fear, because that does NOT help current sufferers.

To make a real difference we need to spread the message of awareness, and get more money into research. These are real things that objectively help. I once said there’s nothing stopping you from doing this, and you said you couldn’t, which I disagree with (tough love). You have posted more messages here than just about anyone in the last week or so. You could easily have put some of that time into creating an awareness campaign (that shows the world your suffering) via a blog or something similar. In fact, there is a guy called Lawrence Thorogood who has severe tinnitus and hearing loss from the military, and he did exactly that and now has 7000 followers (he also shared Danny’s campaign without me asking). Doing something like this would be exponentially better than critising a fellow sufferer who went on the news and actually talked about his tinnitus. That might have been the first time some who were watching had heard about this condition, so now they know and some may have looked into it further (UK wide coverage is a lot of people). This is certainly better than hearing nothing about it. For sufferers who post here all day thinking it helps the greater cause, it doesn’t. Only tinnitus sufferers come here and read these posts. Real advocacy means telling the rest of the world, and then helping to change tinnitus care for the better.

Don’t forget that getting many sufferers together has a magnifying effect. Everybody bounces off each other which can collectively increase one’s paranoia right across the board. I once compared this with going to the AA for help only to find out you have been given an active alcoholic as a sponsor, and that the rest of the community are still alcoholics as well. I’m sure that would help immensely.

 

@Bam there is a distinction between where you are and where the (approximately) 99% are. Scaremongering is not awareness, look at every condition and you’ll see that shouting about how bad it is does nothing for either awareness or fundraising.

If it had been me on the show I would have expressed my tinnitus differently but I would not have ranted about it because I understand the damage that it can do. I would have expressed that it’s taken me to very dark places, that I am mostly habituated but it still isn’t easy. I would try and end by letting people know they can do things to help. Because if I left them thinking that tinnitus was guaranteed torture and life would be over then I would be lying and causing untold harm to a lot of people.

The ranting on Tinnitus Talk is wholly disproportionate to the actual picture of tinnitus for the overall majority. To me it’s important to acknowledge what tinnitus can do to you but just as important to keep perspective. Otherwise you are intentionally harming those people in a fragile state and creating unnecessary suffering. Ranting can be a very good coping mechanism, but you should always have a check valve.

 

@Ed209 @Steve

I stand by my point that there is not a single other charity on earth that seeks to raise awareness and funds by downplaying the worst aspects of the cause they’re campaigning for. It makes no sense at all, it’s completely illogical.

Take for example a condition often compared with tinnitus... ME and their charity Action for ME.

This sort of thing is on their website....

“I feel like I wake up with a mattress on me most mornings. When I wake up with post-exertional malaise, there is an elephant sitting on the mattress. He stays there for days. He steals my words and fills my brain with wet cotton wool and wraps his trunk around my neck, so I struggle to swallow.”​

Pretty graphic huh?!?

So why not at the very least represent some of the 1% on the BTA website with similar depictions of waking up feeling assaulted by noise every second of every day?

It’s just plain odd to me that you have one of the scariest and nastiest conditions on the planet and yet the charity representing it seems terrified of admitting this and would rather err on the side of caution in case they scare the horses.

Well newsflash the horse are already f***ing terrified.

 

It's tough figuring out who the audience is for this sort of thing. I see the primary audience as the millions of people living with tinnitus who haven't sought treatment, have it but don't know what it is or haven't got past their GP. I want them to know there is the possibility they could find a way to manage tinnitus.

The interview was secured to launch our Tinnitus Guidance for GP's. We produced this because GP's see more tinnitus patients then any other group, don't have training on tinnitus and often give tinnitus patients the most destructive information, 'There's nothing you can do, you've just got to learn to live with it.' It was important not to reinforce this perception by discussing what can help some.

 

We don't screen these. Depends on the people who come forward to participate.

We include more in our magazine Quiet.

 

I get that but why pass up a good chance on national TV to really raise awareness of both sides of the coin? Something like... ‘there are a lot of people with a very mild intermittent version of this BUT there are a minority which still totals thousands of people of all ages in the U.K. alone, who are dealing with something that is essentially noise torture... 24/7 intrusive loud screeching in their heads that never stops. Until a cure is found these people are living day in day out in such hopeless despair that it’s now not unheard of for them to be euthanised in other countries in Europe due to psychological suffering... And its important to stress this could happen to you or any other perfectly healthy individual of any age for little or no reason at all.’

Boom! BBC presenter girl chokes on her biscuit. The guy spits his tea over you... Awareness raised.

 

Exactly. The downplaying of tinnitus is hugely counter-productive for raising awareness and raising research funds. You have to ask the question "why would the tinnitus charities do this?" - when ME charities and charities for other health conditions have shown that stressing the seriousness of the condition helps with awareness and fundraising.

The only convincing answer is that the tinnitus charities are run by and for not tinnitus sufferers but "corporate tinnitus" - the professionals who make their living from tinnitus and in whose interests it is very much to claim that tinnitus can become a "non-serious" health issue with their (paid-for) advice.

 

I'm sorry but this approach just does not work. That is why you don't hear it from other charities or people who raise funds. We reached a saturation point of being advertised at in this way and it has ceased to have an impact.

At work I have played my tinnitus sound for people. I tell them that it's not easy and that it affects concentration and sometimes I am on a short fuse because of it. If I just started shouting about it and saying things like your quote above I can guarantee there would not be an understanding. I would lose respect, they would not empathise or understand when I'm not doing my best.

There needs to be balance, I agree with you there. But what you suggest is not balanced, it's going to scare people and cause unnecessary harm. We need to show that it's not easy but ranting has no power in conveying that message.

 

You have ignored every single thing that has been said and ignored the points raised and responses to you. The BTA have a clear direction, the new focus on the cure map and lobbying for curative research funds - but because it does not fit with your conspiracy theory narrative you choose to ignore it.

You are an impossible person to debate with because you show no reason and refuse to waiver no matter what is said or what the reality is. You're stuck in your ways.

I can personally see the way the BTA have changed and I know they are driving things towards a cure. I spend time with them and we try and work with them where we can - it would be silly not to combine efforts in such an underrepresented field. Personally I will take any and all creative and constructive criticism. If we should be doing things a different way then we will do it a different way.

Likewise the BTA are doing the same. FFS the Chief Executive is on an unrelated forum listening, taking points on board and giving feedback in his spare time at a weekend! Is that a conspiracy to withhold the cure and downplay the condition of all people with tinnitus?

 

Manny - when you talk like this - I love you !!

The “I did it - and you can do it too” brigade
need to be “kneecapped”prior to being “crucified!”
I would love to be their torturer.
They are ignorant, insensitive, “ARSE’OLES !!!”

(This is no good - I really should learn to say what I really mean.....)