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Tinnitus Sufferers Take the Lead in Research

The Time Is Now — Tinnitus Sufferers Take the Lead in Research

By Hazel Goedhart, Director of Tinnitus Hub

It was the moment I had been working towards for years; presenting at the Tinnitus Research Initiative (TRI) conference in Dublin last June. But it did not go as expected…

I had not been nervous beforehand, excited rather. It was the first time that we got a speaking slot at the biggest tinnitus research conference – maybe even one of the first times that any patient organization got to speak at TRI. I was happy at the opportunity to represent the voices of tinnitus sufferers in front of hundreds of tinnitus researchers. I was well prepared. In my day job (for a financial services company) I lead dozens of people and give presentations all the time. I am not only comfortable and confident giving public talks, but I even enjoy it. What could possibly go wrong?
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Tinnitus Research Initiative 2022 Conference in Herrsching

When Will We Finally Get a Voice in Tinnitus Research?

By Hazel Goedhart, Director of Tinnitus Hub

Imagine being invited to join a group holiday, only to find out you will be travelling to a destination that holds no interest for you. Everything is already decided, and what is worse, it seems that everyone except you was involved in the decision making. Yet, you feel compelled to join because you have no other options.

This is how I often feel when representing tinnitus sufferers in research projects. Over the years, we have built up an extensive network in research. We were invited as ‘partners’ or ‘advisors’ to various projects, but always after the research agenda, budget, and plans had been set in stone. It never felt like an equal partnership.

COVID-19 did not help. With in-person meetings suspended, we had fewer options for engaging with the research community. But that all changed last week when I attended two tinnitus research events in Germany. I packed my suitcase, excited to finally be representing our wonderful community again!
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Here's Why the Jury's Still Out on Lenire

Here’s Why the Jury’s Still Out on Lenire

By Hazel Goedhart, Director of Tinnitus Hub

You’re suffering from tinnitus and you’ve heard of this new treatment called Lenire. You’re wondering if it might be right for you. You might have found the Lenire thread on our support forum Tinnitus Talk but gotten discouraged at the thought of reading 7.000+ posts. You just want a quick, easy and, most importantly, independent assessment of this device. That’s why we compiled this article for you.


We cover:


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Towards Tinnitus Subtyping

Toward Tinnitus Subtyping: or Finding a Key for Each Keylock

By Jorge P. Simoes, University of Regensburg

Dearest members of the Tinnitus Talk community,

My name is Jorge Simoes and I’m a PhD student in Regensburg, Germany, under the supervision of Dr. Winfried Schlee, Prof. Nathan Weisz, and Prof. Berthold Langguth. My interest in tinnitus sparked in 2016, when I developed tinnitus myself while I was a Master’s Student in Neurosciences. Like many of you, I went to a GP only to be scorned at: “Oh, that’s just tinnitus.” Since then, I decided to pursue an academic career in the field, and hopefully the insights of my work will translate into better care for tinnitus patients. On a personal note, my tinnitus is quite manageable; only during periods of great stress am I really annoyed by it, especially before sleep and exams.
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Citizen Science Tinnitus

Why Tinnitus Needs Citizen Science: A Researcher’s Perspective

By Deborah Hall, University of Nottingham, UK and Malaysia

Citizen Science reflects a radical twist on the conventions of medical science. Broadly, we can describe it as any activity where members of the public are actively involved in producing new knowledge. To share with you a couple of examples, the weather and animals are some of the UK’s favourite topics. Unsurprisingly therefore, the BBC’s Weather Watchers community comprises more than 57,000 people who contribute to building real-time pictures of the weather across the UK. And the RSPB’s Big Garden Birdwatch is the world’s largest wildlife survey, which has generated data for more than 40 years.
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UK House of Commons Tinnitus Roundtable

Pushing the Political Agenda for Tinnitus

By Megan Gill

On the 16th of January 2020, I had the honour to represent Tinnitus Hub at the Manifesto Roundtables, organised by the British Tinnitus Association (BTA) and hosted by Sir John Hayes, MP for South Holland and the Deepings and also a tinnitus patient for over 30 years.
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European Clinical Guidelines for Tinnitus

What Do Clinical Guidelines Tell Us About Tinnitus Treatments?

The one thing that people struggling with tinnitus mostly search for is a cure. Or if not a cure, then at least a treatment that will alleviate their tinnitus somewhat. Countless hours are often spent by desperate tinnitus patients Googling, reading articles, and asking their peers in online support groups for treatment advice.
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TRI 2019 Tinnitus Research Initiative Taipei

Evolution, Revolution, Stagnation? – Exclusive Insights from #TRI2019

I already shared with you my general impressions of the tinnitus research field in our previous blog post. We had promised to follow up with a bit more detail on what actually went on at the Tinnitus Research Initiative (TRI) 2019 conference in Taipei, so here we go!

Since I spent most of my time conducting video interviews (they are coming soon, I promise!), I could hardly attend any of the talks. Here at Tinnitus Hub we’re all volunteers (who suffer from tinnitus ourselves) and we operate on a negligible budget. This meant I was alone at the conference, running around and trying to do a hundred things at once. It still stresses me out just thinking about it, haha.

And there were so many talks! The program entailed six keynote speeches, and 20 symposia – each of the latter including up to five different speakers.
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#TRI2019 Tinnitus Research Initiative Conference

Seven Things I Learned at the #TRI2019 Conference

Are you curious about what’s really going on in the world of tinnitus research? Here at Tinnitus Hub it’s part of our mission to keep you informed. We’re kicking off a big project this year, publishing a series of short video interviews with tinnitus researchers. But I’m getting ahead of myself… First, let me tell you a little bit about the Tinnitus Research Initiative (TRI) annual conference that I recently attended.
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Tinnitus Sufferers Take the Lead in Research

The Time Is Now — Tinnitus Sufferers Take the Lead in Research

By Hazel Goedhart, Director of Tinnitus Hub It was the moment I had been working towards for years; presenting at the Tinnitus …

Tinnitus Research Initiative 2022 Conference in Herrsching

When Will We Finally Get a Voice in Tinnitus Research?

By Hazel Goedhart, Director of Tinnitus Hub Imagine being invited to join a group holiday, only to find out you will be travelling …

Here's Why the Jury's Still Out on Lenire

Here’s Why the Jury’s Still Out on Lenire

By Hazel Goedhart, Director of Tinnitus Hub You’re suffering from tinnitus and you’ve heard of this new treatment called …