Episode 19: It's the Data, Stupid! — Christopher Cederroth & David Stockdale

You guys all know this, but apparently it still requires clarification: Having ringing ears for 5 minutes is not the same as chronic, severe tinnitus. Unfortunately, many large population studies have only measured the former. Hence, you will hear figures like ‘20-30% of the population has tinnitus’.

To make real progress in tinnitus research, we need better definitions, more focus on chronic & severe sufferers, and much larger sample sizes. Otherwise, we’ll continue to see clinical trials fail.

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To kick off Tinnitus Week 2022, we discuss the topic of biobanks with Christopher Cederroth, a researcher who focuses on the genetic underpinnings of tinnitus, and David Stockdale, the chief executive of the British Tinnitus Association.

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Listen on:

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We welcome any discussion, but please keep the following in mind when commenting:

• Off-topic comments, i.e. not directly responding to the content of the podcast, will be removed. So please do listen before commenting!
• While we welcome constructive criticism on ideas or policies, we do not tolerate direct attacks on individuals.

This episode was produced by @Markku and @Hazel, with the transcript created by @Andrea Rings and @Liz Windsor. Do you want to volunteer as well? Let us know!

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Hallelujah. Going to be a good episode this one.

 

Not any form of masking has ever worked for me. I have had tinnitus since I was 12. I have never known silence as it is present 24/7 usually severe to medium. It is constant and combines with my cluster headaches driving me insane.

At 73 I live with it and along with my lung fibrosis is just another problem I have to deal with.

I have been about 8 years ago on a six month course organised by the local health care board concerning living with tinnitus which I found very helpful as speaking with fellow sufferers does help.

I don't take any drugs for it.

A recent survey here (the Netherlands) discovered that more than 25% of the population has suffered at least once from tinnitus.

 

I've been saying this for a long time. Most tinnitus is easy tinnitus, and if you're within 1 standard deviation from average severity you'll be just fine. I've been probably 3 standard deviations and it's worse than pain.

 

I have listened to this podcast twice now. It's a fascinating episode, thank you to all involved.

Prior to this discussion I hadn't ever heard of Christopher Cederroth but I have to say that within the first few minutes he really went up in my estimation after he pointed out that although it is important to evaluate the effects of Covid on tinnitus, we must not forget the effects that stress related to environment have had, like lockdowns and work worries etc. I've got a lot of respect for people willing to make a comment that in some circles may even be considered politically off-piste so props to him for doing so.

It's frustrating to hear discussion about what I guess many long-termers like me have been quietly pointing out for years. That mainly the lack of accurate sub-typing distinguishing chronic, severe sufferers from those who are relatively new to tinnitus is having the effect of introducing a lot of noise into the data. And this alone appears to be scuppering attempts to even make an accurate assessment of what tinnitus as an 'illness' really is or means. This is why it's so refreshing to hear Christopher mention these specific EEG measurements that can really tell and distinguish the chronic severe sufferers from others and move forward with that.

I've got a lot of time for David Stockdale but I do think he risks alienating people with comments preferencing the study of young people with chronic tinnitus. I'm 54 years old and have had tinnitus for 30 years (pretty severe the past 5 years). Aside from this I'm a reasonably fit and healthy bloke so I don't think it's wise to discriminate against people like me, whose numbers in the tinnitus community I reckon are probably legion. In many ways it's people like me with decades of tinnitus evolution (including now mild hyperacusis unfortunately) who are the ones that can offer the best data, both anecdotal and medical. We should not be overlooked.

I think in principle the biobank is a fantastic idea as long as it contains the data actually needed to address chronic, severe tinnitus. I imagine if Christopher (with his comment that there is currently no clear direction in how we gather these data) gets his way we can achieve this And on that front I think David's idea to get on the road and tour the country collecting the samples etc is a huge step forward. My only gripe with the methodology is his ongoing adherence to the TFI. It's high time in my view that we commit to dropping forever this profoundly outdated and outmoded system for evaluating tinnitus severity and in particular how chronic our tinnitus is.

Questions on the TFI only focus on the previous week. This opens up the ridiculous scenario where someone like me (and this has happened to me) has a 'good' week prior to honestly filling out the TFI questionnaire only to be told by the audiologist that we do not in fact have problematic tinnitus. Again - noisy data.

I hope and pray the BTA really moves to get us into the 21st century on this point. Maybe they need to roundtadble with some more severe chronic sufferers to really help and contribute to their tinnitus roadmap going forward.

Anyhow, thanks once again for producing this episode. It's great to hear Christopher and David acknowledge and outline the issues I feel are genuinely the most important ones we're facing. And @Hazel asked all the right questions.

 

Yeah I have horrifying tinnitus. For some reason now when I wake up, just about 4 to 5 days a week, I have severe pain in my ear with a highly intense loud ringing. I’m going on six years now with this insanity.

I wish the tinnitus community started being real and call it what it is. It is suicidal tinnitus for some of us, not chronic tinnitus.

 

I liked David Stockdale but it's good he has moved on. He failed in the most important aspect as a CEO - securing significant funding. Whether his negotiation skillset was poor or he lacked assertiveness, I don't know. We have been let down as the ability to secure significant funding, especially for a prevalent symptom with no treatment, is unforgivable. BTA now have a new CEO, Deanne Thomas.

In a new era, her key determinant of success will be her ability to secure funding. No ifs, no buts, money must be raised from the NIHR, donations or events, call it what you like. At a roundtable meeting a couple of years ago, David Stockdale asked for 7.5 million per year as it equated to 1% of NHS expenditure on tinnitus. We can make a judgment next year.

Saying how many volunteers you have answering the phone doesn't cut the mustard!

 

I liked David Stockdale too. And the fact he was willing to engage directly with this community says a lot about him I think. Nevertheless, I often detected a kind of caution or reserve in his demeanour.

If we're to break the status quo, we need to see some mavericks occupy these influential roles.

 

Yes, I like the word Maverick. Just simply occupying the seat of the previous CEO and get familiar with the running is not taking us anywhere positive.

I hope her vision is single minded to exploring and delivering treatments. Posting how many phone calls are answered is not the way. We need to move forward quickly as we are one of the few conditions with no treatments. Saying it's complicated etc doesn't really wash. Yes, it is complicated, however so was Epilepsy and Parkinson's.

We must see a dynamic leader raise the profile, funding and activity levels in the field.

Less emphasis on support (that is covered by great volunteer efforts in the team) and more focus on engaging with research and development and funding bodies if they are to achieve their mission.

 

With its recent chair change, maybe it's time to write an open letter to BTA and Deanne Thomas - something communicated on the Tinnitus Talk letterhead and endorsed by this site. What do you think? In principle, would that be a good idea?

Recently I had an appointment with an NHS audiologist/tinnitus/hyperacusis specialist. A couple of points to note:

• The person I met was wearing a Neuromod branded neck band to hold their key-pass
• Paperwork I received to go away with and read as part of my tinnitus/hyperacusis plan was printouts from the BTA

Clearly the BTA maintains a fundamental role at (publicly funded) NHS point of care, which I understand and think is reasonable. But it's also clear to me (particularly after my last appointment) that this is a bit of a carousel and the state of tinnitus diagnosis and treatment is doggedly locked into a paradigm that hasn't changed for at least 30 years, which is unacceptable given that important aspects of 'the science' have moved on.

These are rhetorical questions but why (for example) is the BTA not campaigning for the abolition of self-reported TFI questionnaires when an organisation like The Bionics Institute in Australia has already proven it can objectively measure tinnitus?

Conversely, why is the BTA not demanding research institutes liaise with The Bionics Institute (or any other organisation that has generated objective tinnitus metrics) when running clinical trials particuarly when those trials are pharmacological in nature and subjects ingest compounds that could potentially be toxic?

This is just a couple of points I would like to communicate to Deanne Thomas in the hope that she can help introduce some common-sense change into the tinnitus research space.

 

Good idea.

Bizarre they wear a lanyard mentioning a treatment they don't recommend.

Yes, the BTA is where people are sent as there are few audiologists specialising in tinnitus.

Yes, they are unfamiliar with latest research and still offer jigsaw puzzles and mindfulness blissfully aware of many more leading edge theories and approaches. It's like they've been in a 30 year induced coma.

We need a new approach that is objective and focused on smart goals with clear timelines rather than 'no one living with tinnitus' mission statement.

The key will be how much funding Deanne Thomas manages to negotiate with the NIHR. This for me leads into the rest. It has to be her primary skillset as success cannot be measured on a number of phone calls taken, keeping us locked in the same paradigm.

 

Thanks very much Hazel for providing this perspective.

I absolutely agree with you on the point of support. The BTA shouldn't move away from this, in my opinion. A line of support, particularly post COVID-19 as GP's surgeries are still straining to see patients face to face, is crucial.

On a side note, this issue of fragmentation is something that continues to frustrate me, particularly when it relates to the research space. I can't count the number of fresh (and old) PhD papers etc that discuss (for example) studies of varying forms of EEG to measure tinnitus. It seems like there are hundreds of this type of paper languising around the Internet and yet no single entity putting it all together and moving things forward. If I remember rightly, Christopher Cedderoth alluded to something similar in the interview he gave in this very thread.

Regarding David Stockdale receiving abusive emails etc, I was unaware of this and can only second what's been stated here. I don't blame him for stepping back. So on that point, suffice to say, as frustrating as the situation can be for those of us in our community who really suffer at times, I would hope that everyone can act professionally and show restraint when communicating online - either openly or person to person. There are ways to disagree and still move the situation forward to a positive outcome.

One suggestion I would really appreciate you putting forward to Deanne would be this one: the self-reported tinnitus handicap questionnaire is not only an anachronistic metric, its reliance on psychological factors that are heavily influenced by placebo means it fails to hold attempts at curative research and effective treatment to a high enough standard. We need an objective way of measuring tinnitus. The vexing thing of course, is that we already know there is one out there. Can the BTA commit to endorsing a campaign for the introduction of objective tinnitus measurement at the clinical point of care in the NHS?

 

The BTA is funding an objective measure - check their website. Of course there are four institutions that are doing this.

 

I think the issue I had with that funding stream was that it's another study with a 3-year timeline that repeats what the Bionics Institute have already confirmed.

One thing I did note about that investment, which also raised a question in my own head at the time regarding the politics of funding, was the presence of Roland Schaette from UCL. Is it a policy of the BTA funding that the money must be seen to be going to British researchers or a British research establishment? I don't know.

 

@UKBloke, I see your point about duplicating research. Are you saying it would be better to consolidate funding into the Bionics Institute?

I hope that funding from the BTA does not have to go to British researchers. It should be awarded to the best personnel that can deliver the type of research we want. So if focus is on an objective measure, then the best research institute, with the most cost effective plan should be awarded the grant.

We certainly seem to have moved away from CBT/TRT/Mindfulness research, thank god. It's done and it's saturated. The same with apps. There is no way forward with this - more a lack of people to deliver it 'in person'.

I find the treatments page on the BTA informative with a few caveats...

Lenire - they refuse to say it does not work and unfortunately have to sit on the fence. I don't blame them as they have a financial relationship with Lenire now and they need the money.

Clonazepam/Deanxit - is omitted yet commonly prescribed by a world leading researcher in the field.

Some treatments have had a flurry of activity over the last few years (tDCS for example) and require updating.

 

Well you only need to look at what the BTA has funded before. I'd say 99% if not 100% has gone to British research projects. Absolutely the vast majority. I don't know if they have a hard policy on that but that's where the monies have gone before...

 

Not necessarily. I'm just fed up with seeing rafts of parallel studies that often tend to conclude the same thing, i.e. the validity of what was studied, and a requirement for... more study.

All of us here don't need reminding that these studies should translate into useful point of care systems. It's just vexing that we have one pretty solid system out there right now today that we could put into action, yet what do we do? Fund another.

I wasn't aware of this. Certainly explains the Neuromod lanyard.

 

@UKBloke, I hear you. What system are you referring to?

Yes, it's frustrating about repeat studies although they often need tweaking and repeating again. Take tDCS for example. Lots of studies but some are poor and they threw up questions due to their heterogeneous nature. For instance, how many sessions is optimal and where is the best place to stimulate. This is something Nottingham University was looking at.

@2noist, I didn't know this.

 

When @DebInAustralia relayed to us what the Bionics Institute told her in this post, I was convinced enough that what we have in existence now - caps on heads with written algorithms running, is a reliable enough system for objective tinnitus measurement.

 

I thought you alluded to that. Yet they say it's 3-5 years away, which doesn't correlate, does it?

I don't accept the ignorance and neglect which is a reason we have no treatment. There is a significant amount of people who don't know what it is, yet 10-15% of the population have it. That doesn't correlate. Why has this not been given prominence in the way that other conditions like diabetes, heart disease etc. Is it the fault of the BTA for not being more visible? You see adverts for heart attacks/strokes/animal welfare on the TV and radio. Where is tinnitus? Like fcuking where? Also, it's a number one military disability so it would be easy(er) to sell. Plus, musicians.

So I don't get it. If people are unaware, how can they donate? There is a donate button on the BTA page but who looks at it? - people with moderate to severe tinnitus.

Try walking into a town centre and a whole host of fundraisers approach. You see numerous charity shops too.

Yes, there are issues with fundraisers who basically work for private 3rd parties and thus a small donation goes to research. The public have caught onto this.

 

I haven't done a deep dive on that but it *could* be down to legals I suppose.

 

The BTA has rebranded itself as Tinnitus UK. New website and design. Given the change of CEO last year, is it time for us to reach out to Deanne Thomas? Perhaps a Tinnitus Talk Podcast on her short and medium term goals?

 

I wonder what people's own personal expectations of Deanne Thomas are?

I've recently gone back and read up on various points in David Stockdale's career. Primarily because I wanted to understand what his interest and involvement in tinnitus was around the time he joined the charity. I found the answer I was looking for in an interview the late Prof. David Baguley did with him just prior to his own death in 2022. The first question Baguley asked was, had you ever heard of tinnitus before joining the BTA? David Stockdale's answer was, no.

I'm not generally against novices accepting these kind of roles if they can really make a difference in the end. But, speaking from 30 years' experience of this condition, in terms of clinical point of care, Tinnitus UK is still recommending the same advice today as was issued to me back in '91; treatment is either hearing aids or psychological therapy.

David Stockdale is proud of his achievements at the BTA, and that's fine; he increased revenue and funded a roadmap to a cure. And apparently a question was asked in Parliament. But I do feel that those of us 'at the coal-face' know the power of the Internet means we're now operating in such a completely different paradigm that I do wonder whether or not a charity like Tinnitus UK will be relevant in the coming years.

For example, aside from issuing the same advice regarding treatment, Tinnitus UK is still focussing on the question of how important it is to develop an objective tinnitus measurement. This is a constant source of frustration for me because we already know that the Bionics Institute is ahead of the curve. Even Emilie Cardon - a post doctoral researcher in Europe has made great gains.

I stand to be corrected but it seems Tinnitus UK is only focusing on Imperial College (I think - maybe UCL) funded, and as yet (I believe) incomplete research that would give the casual observer new to tinnitus the idea that no such objective measuring tool exists, when quite clearly the opposite is true - albeit in a research setting.

The reason I keep returning to the above point is really about trying to give some context to the modern paradigm shift, which the Internet has created. Apparently (depending on who you listen to) we live in a global village where borders ceased to exist and information travels freely and instantly between peers, which all sounds great on paper until we look at a UK based charity funded by UK donations. At that point the model seems to operate more like a closed-shop.

Is it the objective of Tinnitus UK to grow infrastructure (as David Stockdale says he did) and employ more people or is it to spearhead the search for a cure for tinnitus? I'm sure they'll say it's the latter, but they've been saying this for a long time, and the research world is moving on

 

This goes back to some points I made earlier in the thread. The BTA (Tinnitus UK) seems isolated. In terms of funding they are limited to their ~20k followers on their social media page. There are 69 million people in the UK with 15% having tinnitus and over 1.5 million having severe debilitating forms.

Maybe Deanne is a Maverick who has clear aims to get treatments in clinics. But this takes money and the right researchers, regardless of where they are.

What does the mission statement 'A World Where No One Suffers from Tinnitus' mean? Because if it means we have 50 volunteers on hand to talk to, we can motion for the closure of such organisations.

We live in a global inclusive society, so what does that mean for the sustainability of an organisation like Tinnitus UK as once the human volunteers are replaced by AI support - and we see it in many organisations - then their role must change.

 

@UKBloke, I received the bizarre and surprising news that Deanne Thomas has already left her post as CEO of Tinnitus UK. This just looks bad, although I've got no details. She has a track record of serving charities for long periods of time and expertise in commercial and financial areas.

 

I'm surprised. She was the CEO for only two months? Something very interesting must have gone down there. Maybe she noticed it's a sinking ship.

 

@2noist, I have no idea what happened but Tinnitus UK is infuriating me.

As far as Tinnitus Week, in my opinion they have been a SHAMBLES! They have spent the entire week focusing on protecting your ears and wearing hearing protection. Whilst this is important, how is this supporting the 12% with tinnitus? Social media engagement with this has been almost zero, it's, quite frankly, been a disaster. I have no confidence in the paid members of staff to run the organisation; some sufferers report poor experiences on the phone and, quite frankly, I think they need a complete overhaul.

And what does their mission statement actually mean? It's vague and blurry.

The reasons for the departure are unknown and could be many. It's not illness though as her LinkedIn profile shows her as available.

Given they rely on public funds, then it's high time the public know they are currently leaderless.

UPDATE:

@2noist, @UKBloke, it has been picked up on in the audiology press:

Tinnitus UK shock as charity parts company with its new CEO after just three months

The Tinnitus UK Chair Lynne Gillon has some very recent and concerning activity. I searched on Companies House and found the following:

Companies House: Lynne Gillon - Appointments

Does anyone have experience of running companies, or at board level?

What's this setting up of "Tinnitus Prevention Limited?"

It looks messy.

 

More can be found in the Overview and Filing tabs:

Companies House: Tinnitus Prevention Limited

Filing history shows that on 31 January 2022 the name of the company changed from Tinnitus 1 Limited to Tinnitus UK Limited. And it was approved by David Stockdale. Then in October 2022 the name was changed from Tinnitus UK Limited to Tinnitus Prevention Limited (because the other company for British Tinnitus Association changed to Tinnitus UK Limited, couldn't have two companies with the same name). That October name change was approved by Lynne Gillon. David Stockdale was out of the picture by that time.

It says the Tinnitus Prevention Limited is "Dormant".

 

It could mean she made enough money to retire? I know many people that are good at fundraising, maybe she got a better offer?