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:

• Tinnitus Talk Podcast (incl. timestamps and transcript)
  
• SoundCloud
  
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• Spotify

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.