Behind the Scenes — Monthly Update from Directors

Hi there, all you Tinnitus Talk members and visitors!

We thought it might be nice to show you guys a bit more about what goes on here behind the scenes. And when I say 'here' I actually mean at Tinnitus Hub, which is the managing entity of the Tinnitus Talk support forum.

Managing the Forum

Managing the forum is in itself of course a full-time job, pretty much single-handedly carried out by @Markku. This involves both the technical maintenance of the site, as well as daily moderation of the forum. I can't express enough what an amazing human being Markku is for doing this, day in day out, literally without ever taking a break, even when he's sick, for the past eight years now! If you have a moment, please stop and consider that extraordinary feat, and the selflessness of it --- all so that you guys can have this forum at your disposal 24/7.

Our Other Projects

But... Tinnitus Hub does more than just manage this forum. We create all kinds of informational and educational materials, like our recently launched podcast, and videos like our Q&A with Neuromod - which has been watched over 100,000 times now.

We also push forward tinnitus research; the patient data we collect through our surveys has already generated several academic publications, and there are more in the pipeline. And we take part in several tinnitus research consortiums, see for instance this recent blog post on TIN-ACT.

Get Involved!

And there's a whole lot more we want to do. Raising awareness for tinnitus in the media for instance, lobbying governments to take tinnitus more seriously. BUT, we are just a small group of volunteers, and there's only so much we can do. If you want to join our little team though, you're more than welcome, just PM me and Markku! There are plenty of skills we can use, from writing to data analysis, marketing, legal, medical, you name it ...

The idea of this thread is to give you guys a monthly update on our work. So that you can get involved directly, by volunteering your time or connecting us with others through your network. Or perhaps you might want to donate (simply follow the donation icon on the homepage). You can rest assured that 100% of donations go directly into the forum and our projects; no salary or office costs.

 

The Week of April 8th

The Forum

We've been emailing lots of doctors and medical associations to get new doctors for our currently dormant Doctors' Corner. No luck so far. If you know of any (retired) ENTs, audiologists, neurologists, or other tinnitus healthcare professionals who might be willing to spend a few hours per week helping out here, let us know!

The Podcast

We're trying to get the next podcast episode together; we have multiple recordings but no one to do editing. And we've been trying for days to record our planned interview with Richard Tyler, but keep getting thwarted by technical issues on his end.

Videos

@Markku and I finally started editing the interview I conducted last Christmas with the mother of Gaby Olthuis, but it's turning out to be a monster of a job; all kinds of audio and video quality issues that Markku is trying to resolve with his usual tech wizardry. This is going to take forever.

Other Patient Resources

I've been working with a couple of amazing volunteers on a really big project to put together a comprehensive review of all tinnitus treatments and what the evidence says. @TuxedoCat is the project manager (which includes producing a lot of the content) and doing an excellent job! More people are needed for this, so please PM us if interested!

Media Outreach

I wrote an article about the new European Clinical Practice Guidelines for tinnitus and the need for a cure, which we'll be pitching to various media outlets.

Research Collaboration

We finalized our part of a research grant proposal for a really exciting new research consortium to gather big data about tinnitus and its comorbidities. This is the third EU grant application we’ve been asked to take part in this month! Hopefully, at least one of them will pan out.

 

The Week of April 15th

The Podcast

We’re nearly done with our next podcast episode! It’s going to be on the new European Clinical Practice Guidelines for tinnitus. When I was in Milan for ESIT, I got to interview two of the co-authors of the guidelines. It was originally supposed to be a video, but the quality turned out too poor. That’s what happens when you do stuff on a zero budget; we couldn’t afford to hire professional crew or equipment. Anyway, the audio will now be our next podcast episode.

In the meantime, also podcast related, we spoke to @PDodge who wants to join our podcast team and help out with editing; we’re getting him started now by trying his hand on some stuff we recorded but didn’t have time to edit yet. Welcome to the team @PDodge!

Furthermore, after multiple failed attempts, @Jack Straw managed to finally conduct the interview with Richard Tyler. It didn’t go exactly as planned though, perhaps a matter of some miscommunication about the questions we wanted to ask (based on your input). Hmmm, we have to see what sense we can make of this...

Videos

The editing of the Gaby Olthuis interview took up most of this week, especially for @Markku. When he gets in the zone, he just works from waking until sleeping, and it’s been like that this whole week. The many quality issues we found with the footage, combined with his perfectionism, make this a monster of a job. More about it here.

Networking

I had a call with a very interesting organisation, who sponsor a lot of research on hearing regeneration (hot topic on the forum) and are interested to collaborate with us. Hope to tell more on this soon...

I had another call with an organization that focuses on a different, but related health issue. They’re very similar to us in many ways, and we discussed some potential areas of collaboration. I don’t want to say too much yet until it’s certain, but hopefully more soon!

Research Collaboration

Academic papers take a long time to write and get approved. But just this week, we were sent the draft versions of TWO papers that were written based on our data or input! One was based on the Physical Links survey, which we conducted back in 2017 and got over 6,000 responses (a veritable gold mine from an academic perspective). The other concerns the COMIT’iD study, for which we recruited and coordinated patient groups back in 2017.

We also had a call with two researchers who focus on sound therapies for tinnitus, as well as gathering big data that could help identify new treatment pathways. We agreed to conduct at least one survey this year as input for their research.

Finally, we really have to start preparing for the TRI conference, since it's already happening 18-19 May, but there was no time this week, more on that next week!

 

The Week of April 22nd

Podcast

Ugh, this has been a painstaking project this week. We have two episodes veeeeery close to be being publication-ready: one on musicians & tinnitus and one on clinical practice guidelines for tinnitus. However, we got stuck on both, due to a combination of audio quality issues and discussions around how to cut (what to leave in or out – these can be tough creative decisions). Well, we’re certainly learning a lot about creating podcasts, and I have to tell you, it’s more work than we originally anticipated! I just calculated that it costs about 68 hours of volunteer labour to create one episode. So… more volunteers are welcome!

Videos

There were still some final editing issues around the Gaby Olthuis interview, including one hair raising day when we thought the video file was entirely corrupted. But Markku once again saved the day . All that’s left now is the subtitling, including Dutch-English translation, and it seems (fingers crossed) that I found someone to do this at a very reduced rate.

Also, the video we created on ESIT has now been posted on their website. We got over 20,000 views of it on our Vimeo channel!

Tinnitus Events/Conferences

I’ve been preparing for two tinnitus research events coming up soon.

In the week of 6 May, I will be in Berlin for a TIN-ACT meeting. (Read more about TIN-ACT in my blog post about the previous meeting.) I’ve been emailing with TIN-ACT management about my contributions, which will focus on patient outreach, i.e. how to communicate about your research to tinnitus patients. I’ll be helping them to run a blog writing workshop and I will conduct (mock) interviews with the 15 PhD students – the latter will be recorded, so if they turn out to be any good, we might be able to turn it into a podcast episode! We’re also gonna see if we can help TIN-ACT improve their website – if you want to take a look and give us input, feel free!

From 14-20 May I’ll be in Taipei for the biggest annual tinnitus conference, organized by the Tinnitus Research Initiative. I’ve been reading up on all the speakers and participants, so that I can come prepared on who to talk to, who might be interesting to collaborate with, etc. Read more about the conference and give us your input here. We also spent quite a bit of time trying to find a cameraperson – not too expensive, obviously – who can follow me around at the conference while I conduct interviews with researchers on the spot. Really hoping that will work out!

Data Analysis

Not all of you may be aware, but Tinnitus Hub has run several large-scale surveys in the past few years, which have already led to a number of academic publications, which I’ve spoken about in one of my posts above. Nevertheless, we feel there is more to be learned from our data sets. Hence, we’ve been on the lookout for a volunteer data analyst to dig into the data. This week, we had a promising call with @PerturbedDude , who seems to have some serious data analysis skills, and is willing to help out. Thanks, dude!


Remember, as this is a locked thread, any responses to our monthly updates can be given here - we'd love to hear from you!

 

The Week of April 29th

Podcast

Pfew, finally! The wait was a bit long this time, but we managed to do the final edits and got our third episode published! It’s been listened to over 7,000 times already. You can listen to it and discuss the episode here. We also created a Patreon page where you can support the podcast financially.

Media outreach

A while back I wrote an article to pitch to media outlets, about the need for a cure, upcoming treatments, etc. We sent it on to a few contacts, fingers crossed!

Research Collaboration

A few years ago, some researchers at Magdeburg University developed text crawlers to analyze the contents of this forum, which led to this academic paper, co-authored by Tinnitus Hub.

We’ve approached the researchers now to ask whether it would be possible to run those crawlers again. It might yield interesting insights into what themes/topics the members of this forum are most interested in. Based on those insights, we could for instance develop a new survey to gather patient data on these topics and advance the research field.

Conferences & Events

Tomorrow, I’ll be taking the train to Berlin for the next TIN-ACT meeting. Read more about it here, including the presentation I worked on today and will be delivering there.

We secured a cameraman for the TRI Conference in Taipei! He seems very professional, so fingers crossed. Winny Schlee, the scientific coordinator of the TRI, and a few of his colleagues at Regensburg University, have been extremely supportive in helping us to put together a list of people to interview and reaching out to them. I will also try to record a podcast episode with Winny, and even bought some good sound equipment for that (well, not just for that, we’ll definitely be needing it for future podcasts and videos too).

Read more about the TRI conference and give your input in this thread.

 

The Week of May 6th

Podcast

Our episode on music and tinnitus has now been listened to 18,000 times. We also got our first Patreon benefactor for 25 dollars per month! That’s truly amazing. The benefactor prefers to remain anonymous, but we greatly appreciate his/her support!!! We already invested in some better sound equipment recently, and this donation will help cover some of those costs. If you like the podcast and want us to keep going, you can support us for as little as 2 dollars per month.

Our interview with Bryan Pollard, a hyperacusis expert, is now confirmed for 23 May.

Videos

The interview with Joan van Baarle, mother of Gaby Olthuis, is neaaaaarly ready for publication. I received the English subtitles and will need to make some time to review them and make any final corrections before we can publish.

TIN-ACT Meeting in Berlin

I was in Berlin on Tuesday and Wednesday for a TIN-ACT meeting. I had an interesting two days helping to train the students on public outreach and communication. You can find my presentation here. Amongst others, each of the students wrote a blog post for us, some of which we’ll be publishing on our Tinnitus Hub blog over the coming months.

Unfortunately, I had to miss the rest of the programme, i.e. the three-day academic programme with loads of interesting presentations, because I suddenly heard that my mom was in hospital with a stroke. So, I travelled over to the UK, where she was on business when it happened, and spent a few days with her before returning to the Netherlands yesterday in order to be able to fly to Taipei tonight to attend the TRI conference. Crazy times…

Tinnitus Research Initiative (TRI) Conference in Taipei

Because of the abovementioned personal circumstances, I’ve not been able to prepare for the TRI conference as I would have liked But, as mentioned before, we have a cameraman lined up and many interesting researchers who consented to doing video interviews with us, so I’ll do my best to prepare adequately for that at the eleventh hour.

The TRI staff have been absolutely amazing in helping us prepare. I will also be interviewing Winny Schlee, the scientific coordinator for TRI, for our podcast while in Taipei.

There's a thread on the conference here, where you can discuss and give input.

Research Collaboration

We have an article in peer review at the moment, pending for publication, on which Markku and Steve will be co-authors. The article is based on analysis of a large survey we conducted back in 2016, with over 5,000 respondents, asking questions about different treatments people have tried and their effects. The article will be called “Towards Personalized Tinnitus Treatment: An Exploratory Study Based on Internet Crowdsensing” and the main author is Jorge Simões from Regensburg University.

Remember, as this is a locked thread, any responses to our monthly updates can be given here - we'd love to hear from you!

 

The Week of May 13th

Conducting Interviews and Networking with Tinnitus Researchers

This week was all about the TRI conference in Taipei. I flew there on Monday and stayed the full week. The conference itself was on Friday, Saturday and Sunday. As I’m typing this, I just got off a 14h flight back from Taipei to Paris and am waiting for my connecting flight to Amsterdam. Finally, back home…

@Markku kindly provided some updates about my TRI adventures here and here. But I promise more will follow soon. I just need to get over my jet lag first and dealing with my mom who’s in hospital. But I’m soooo looking forward to telling you all more. First up will be a blog post and then we will release a series of video interviews that I conducted at the conference!

What Would You Like to Ask Marcelo Rivolta?

In other news, we secured a podcast interview with a prime researcher on stem cells and hearing regeneration: Marcelo Rivolta. See this thread for more information, and provide us with your questions!

Sorry peeps, this is about all I can manage now, I'm exhausted

 

The Week of May 20th

So many things are brewing. You’ll hear a lot more about TRI in the coming weeks, but we need a bit more time to prepare something nice for you guys. In the meantime, just a few other little tidbits:

Video Publication: Joan van Baarle

We just now, finally, published our long-awaited interview with Joan van Baarle, watch it here!

Podcast: New Episodes Coming

Thanos Tzounopoulos agreed to be on our podcast! The bad news is, he isn’t available until October. But that’s ok, we have plenty of other episodes in the pipeline.

We’re putting together the Richard Tyler episode now and hope to release it in the coming week.

Exciting New Project Ideas

While I attended the TRI conference, I was able to talk to a lot of researchers, and convey the need for:

a) Better help/self-help resources for patients;
b) More public awareness about the condition.

Out of all my discussions, two concrete ideas emerged, that we would like to follow up on over the course of 2019:

1. We will be working together with Sarah Michiels, one of the very few researchers who focusses explicitly on somatic tinnitus, to create a series of self-help videos with exercises for patients whose tinnitus has a somatic component.

2. We will be working together with the TRI staff to create a quarterly newsletter to be sent to journalists, with the most interesting new developments in tinnitus research. The content would be partly determined by Tinnitus Talk members! It could be a good way to get more media attention for tinnitus.

If you’re interested in working on either of these projects, let us know via PM, or in the thread we created for your responses to these monthly updates.

 

The Week of May 27th

New Podcast Episode Out

We released our fourth episode of the Tinnitus Talk podcast! So far, less listener response than for the previous episodes. We’d love to hear what you think of it though. Please comment here on the episode (after listening of course).

We have a lot of future episodes already lined up, including an interview we recorded just last week with stem cell researcher Marcelo Rivolta. So we’re definitely keeping them coming, probably in quicker succession than thus far.

We also want to experiment a bit with different formats. Rather than just one-on-one interviews, as we have done thus far, we want to do panel discussions or episodes with multiple shorter fragments. We also want to get more ‘regular’ tinnitus sufferers on the show. Do you want to co-create with us, or submit an idea? Let us know here.

TRI Conference Blog Post

It took me a while to compose my thoughts about the TRI Conference, the biggest annual tinnitus event, which I attended two weeks ago in Taipei. But I wrote this blog post about it, which has received quite a bit of attention. Some researchers that we’re well acquainted with told us it’s an excellent summary of where the tinnitus research field currently stands. So do read and comment! In the post, I also talk about future publications we’re planning based on our TRI presence, so there’s more content coming soon

Success Stories Video Project

We know that many people come to Tinnitus Talk looking for hope. Hope for better treatments, more understanding, support from fellow sufferers… but also hope that it’s possible to get better, to recover somehow. When I got tinnitus 1.5 years ago, this is what drew me to Tinnitus Talk, and that’s why I mainly read the Success Stories section, which helped me immensely. Many members have told us they’d love to see more success stories, which is why we decided to turn this into a video project. Read more about it, and take part, here.

 

The Week of June 3rd

Hi there! I’m a bit late with my weekly update, because I had another exciting trip to the emergency room with my mother. Good times.

Physiotherapy for Tinnitus Project

We made some progress with our collaborative project with Sarah Michiels and Winny Schlee on physiotherapy for tinnitus (see week of May 20th). We now have an outline for the program, i.e. a 9-week self-help course, especially tailored for those whose tinnitus is (suspected to be) caused by neck or jaw issues. To be developed further…

Lenire – User Experience Group

Now that Lenire is officially launching, and people can sign up to buy the device, we decided there’s a need to structure the way in which future users report about their experiences. Rather than having everyone report through different channels and using different methods, we want to put some structure around this. We opened up this form, where people can sign up to take part in our User Experience Group. So far 71 people have signed up, which is awesome!

We also found two respected members who volunteered to help us project manage this. Thanks for stepping up, @Drone Draper and @dayma!

TRI Video Interviews

We started editing all the video material that we shot at the TRI conference in Taipei. @Autumnly has been helping with this, and as it turns out she’s quite the talented video editor! We hope to publish the first few videos in a week or so, the rest will follow in batches.

Volunteers

We’ve had more people than ever approach us asking what they can do to help out the online tinnitus community or offering their specific skills. This is awesome beyond belief, so keep it coming! Together we can achieve great things. PM me and Markku if you’re interested, or contact us here.

 

The Week of June 10th

Hi everyone! This week really has just been a continuation of last week, working on the same projects: the physiotherapy self-help course; the TRI video interviews, and the Lenire User Experience Group. They’re all moving ahead, but nothing really exciting and new to tell at the moment.

We also had a very nice call with @TimmyC about social media strategy. He gave some useful advice on how to reach a broader audience through our social media channels. We now plan to create a content calendar where we log outreach efforts ahead of time. We also want to make our social media message more engaging and (dare I say) fun

 

The Week of June 17th

Lenire User Experience Group

We had over 80 people sign up to become part of the group that will report through us on their experiences with the Lenire device. We also found a volunteer project manager to take on this significant project: @PeterPan. He’ll be introducing himself further soon. We’re very excited to have him on board.

We’ve been in touch with several research contacts to advise us on how to set up this project in a scientifically sound way. Even though academic publication is not the goal per se – rather, we just want to give you guys a well-structured overview of user experiences – it can’t hurt to use the best tools available!

If you’re trying out Lenire soon, please consider signing up here to become part of our User Experience Group.

Data Analysis

I spent half a day this week organizing all of our survey data. We conducted five major surveys over the past few years, each of which got several thousands of responses. This has already yielded a number of academic publications. But we feel there’s a lot more we can do with that data, so we want to do some of our own analysis. We need data analysts who can help us dig deeper into this treasure trove of data! Please PM me and Markku if you can help out, or contact us here.

Collaboration with Veterans’ Associations

Our trusted volunteer @TuxedoCat is picking up a new project. Since we know that tinnitus is the number one health complaint for veterans, we thought we should seek collaboration with veterans’ associations, in the US to start with. We’re now just scoping out who to approach and how we can collaborate. @ChrisBoyMonkey, a veteran himself, is advising us on this.

Podcast

We’re veeeeery close to publishing our next episode, on hearing regeneration and stem cell research. As usual, there were some audio quality issues to fix. And we’re also adding a segment where we talk about the podcast in general, what we want to achieve with it, etc. Stay tuned….

TRI Conference Videos

Together with @Autumnly we’ve been working hard to make ready for publication the video materials we shot at the conference. We’re very close to publishing a video with our general impressions of the conference, as well as a video where three tinnitus researchers talk about the field in general in a kind of (mini) panel discussion. But that still leaves all the individual interviews we conducted with over a dozen researchers to edit. It’s quite the mammoth task!

 

The Weeks of June 24th and July 1st

You may notice that the heading of this post mentions two weeks. It turned out the weekly reporting was a bit too onerous for a small volunteer group like us. Without in any way changing our commitment to transparency, we will therefore shift to bi-weekly updates.

Please do let us know what you think of these updates, so that we can further improve!

Physiotherapy for Tinnitus Project

We made some progress with our collaborative project with Sarah Michiels and Winny Schlee on physiotherapy for tinnitus (see week of May 20th). We now have recorded videos for the neck exercises that will form the core of the program. I drove to Antwerp earlier this week to meet with Sarah and record the voice over instructions. We also recorded an intro video for the program. @Markku of course performed some “Markku magic” with the editing.

This really is moving ahead well; we might be able to launch in a few months or so. The program is meant for anyone with somatic tinnitus and will be free of charge!

Lenire – User Experience Group

@PeterPan has been an awesome project manager and this is moving ahead really well! Check this post with his latest update.

You'd be surprised at how much time a project like this costs, probably over 100h already so far. We spent a lot of time designing the right questionnaire and consulting researchers on it. Hopefully, we can use this as a template for collecting user experiences on all kinds of treatments, and presenting them to the community!

TRI Videos

We published the first two videos from our #TRI2019 series! Read more about it here. The panel discussion video has been watched 10,000 times already!

Again, you'd probably be surprised to learn how much time goes into such a project. Of course, there's all the editing and graphic design, but also tonight for instance I spent 2-3h emailing all the researchers we interviewed to ask them for some slides or other visual materials to incorporate in their video interview.

TRI Survey

You might be interested to know that we conducted a survey among all who attended the TRI conference. We asked them questions like “Do you believe there is enough cooperation between tinnitus researchers worldwide?” But also: “Do you believe that curing hearing loss would cure tinnitus?”

Do you want to help us compile and analyse the results? Please get in touch if you’re interested!

 

The Weeks of July 8th and 15th

Sound Therapy App

This has been in the works for a few years, but we finally feel confident enough that it will really happen, so we can now announce it: We’ll soon have our very own sound therapy app available in the app store!

Funded by a philanthropist, and developed with several sound engineers, including our very own @Steve, the app will not only offer sounds to mask your tinnitus, but also sound techniques that have been demonstrated, in clinical studies, to have a more long-lasting effect for some patients. More research is needed to find out for whom these techniques work best and how best to apply them.

We will offer the following sound techniques:
· Notched Audio
· Neuromodulation
· Amplitude Modulation

These are sound techniques that are being marketed to tinnitus patients at high price points, but we will offer them to you for free. A lot of volunteer work has gone into this from our side, and the developers were paid by a philanthropist.

We are currently putting together a user testing panel for the Beta version. If you have an iPhone and would like to take part, please contact us!


Lenire User Experiences

The first Lenire users have started using the device. We created a separate thread for user experiences only, so as to make this information easier to find (i.e. in the main thread it would get buried).

We now also have 136 people signed up for our Lenire User Experience Group. We will ask all of them to fill in surveys – which we’ve developed with researchers – before, during and after treatment. It will be at least a few months before we have gathered this data from the first few users, and quite a bit longer before we have a large enough sample to report anything meaningful. So, it’s quite the long-term project, but we’re hopeful that we’ll get some useful insights from it.

 

The Week of July 22nd and 29th

As always, too much to do and too little time. For ages now, we’ve been meaning to give the Tinnitus Hub site a serious upgrade, but that keeps getting postponed. Tinnitus Talk itself also needs a serious overhaul, and no idea yet where we’ll find the time or money from. But more on that later! What did we do this week?

Sound Therapy App

The back-and-forth with the developers has been very time consuming. We’ve had to repeat our feedback multiple times before it got properly implemented, and they were not able to develop some of the features we wanted.

We’re currently having a few members test out the app (see previous update for more details) and give us their feedback. If you want to test it, let us know! You need to have an iPhone though.

Lenire User Experiences

@PeterPan has been hard at work with the tedious task of following up with anyone who signed up to (anonymously) take part in our User Experience Group; getting them to tell us when their device fitting appointment is and making sure they fill in our survey. So far, 9 people who have gotten their devices filled in the first part of the survey, which includes baseline questions on tinnitus severity and characteristics. Hopefully, they will also fill in the subsequent parts of the survey, because this will give us actual information about how the treatment is working out for them.

Success Stories Videos

I rented a studio in Amsterdam, where me and two other tinnitus patients recorded our personal stories about how we struggled with tinnitus and managed to learn to live with it. This is as part of this project to record personal "success stories."

Interesting to note that while recording, we all struggled with the balance of conveying the severity of the condition and how desperate it can make a person, while still conveying hope that it can get better. It also became clear that ‘success’ is a matter of degree. You can learn to live with your tinnitus, but it might still bother you. We think it’s important that all these nuances come across in this video series, so that it doesn’t become a crude message of “I’m doing great now and you can achieve the same!”

Patient Involvement in Research

We had an interesting call with some of the researchers who manage the Tinnitus Research Initiative (TRI) about how to involve patients more closely in research.

A while ago, we conducted this poll, which shows overwhelmingly that patients don’t just want to be passive consumers of research, but more than anything want to be involved in setting the research agenda. In other words, we patients want to make sure that the right research questions are being addressed; the questions that really matter to patients.

It was awesome to see that the researchers we spoke to felt much the same; they’re wary of researchers becoming too much absorbed in their own “research bubbles” and assume that their research questions are of interest to patients, but often don’t bother to check this.

We brainstormed about some concrete measures we can collaborate on to make this happen. Once this turns into a more concrete project we will let you know!

Academic Publications Co-Authored by Us

Two academic papers were published recently featuring us as co-authors. Our contributions was mainly gathering patient data through surveys; this is our way of contributing directly to tinnitus research. One paper explored the topic of tinnitus heterogeneity and another focuses on somatic tinnitus.

 

The Week of August 5th and 12th

BTA Conference and Expo

We’ve started preparing to attend the BTA’s annual conference and Expo. It will be me, @Steve and @Liz Windsor there. We’ll try to take as many notes as we can, and conduct interviews if possible, to give you all a flavour of what went on there.

If you live in the UK, please check out this thread and let us know if we’ll be seeing you there!

Podcast

We published our 6th episode. Not a lot of response so far, so please take a listen and let us know what you think! We do rely on your feedback to make the podcast even better.

NICE Committee

In September, all of us (you too!) will have the opportunity to help shape UK healthcare policies for tinnitus. Read more about this project here. This is truly a unique opportunity for tinnitus patients to have direct input in their care, and we want to help facilitate this for you.

Sadly, only two of our UK members came forward to be part of our committee. I must admit, I’m very disappointed. This is exactly the kind of thing the online tinnitus community always clamours for, yet when push comes to shove few want to put in the time and effort to make a difference. Apologies if I sound bitter

 

The Week of August 19th and 26th

We haven’t been able to keep up our usual pace of work these past two weeks. I was dealing with a death in the family and Markku has been ill. But, nevertheless, here are our updates…

Lenire Project

You can find the latest update on our attempt to gather user experiences for the Lenire device here. We’re hopeful that over time, we’ll gather enough experiences to give you valuable insights.

Podcast

We published another episode of our podcast! Listener numbers are a bit underwhelming for this one so far (though still a good 10,000 or so, we certainly can’t complain; overall the podcast is doing much better than expected). We’re wondering whether people really just want the “sciency” ones, since those seem to do best, i.e. over 30,000 listeners to the Marcelo Rivolta episode. Well, no worries, there will be at least a few more research focussed episodes before the year is out

 

1 September – 6 October

Wow, it’s been difficult to keep up with these updates, and I’m not even sure whether people care all that much, haha. But in the interest of transparency, we remain committed to giving you a behind-the-scenes look at what goes on here. But to make it manageable for myself (being just a volunteer and having plenty of other stuff going on in my life), we decided to make it a monthly update.

We’d love to hear what you think of these updates, please do let us know in this dedicated thread!!!

Lenire/Neuromod

Our Lenire User Experience Group is going well; you’ll find we have collected quite a few qualitative experiences in the user experiences and review thread. In addition, over 30 people who are trying the treatment have now filled in our pre-treatment survey, of which about a dozen have also filled in the 6-week follow-up survey. Preliminary results show… well, you’ll just have to keep an eye out for a new post coming soon from our wonderful project manager @PeterPan with some stats and charts.

Furthermore, we will be interviewing Neuromod very soon, and this will be published as our next podcast episode. We gathered a long list of questions from you guys, so hopefully you’ll get the answers you seek! For me, doing these interviews is always fun but also highly stressful as a lot of planning and coordination goes into it, and I find myself playing the role of interviewer and audio technician at the same time, which is… nerve wracking. Fingers crossed…

TRI Interviews with Researchers
Our video interviews with over a dozen researchers, which we recorded at the TRI conference in Taipei back in May, are finally almost ready for publication. Or rather the first batch is ready, featuring interviews with Susan Shore, Birgit Mazurek, Deb Hall and Alain Londero. All very different researchers, looking at tinnitus from different angles, and each video will be only 5 minutes or so, therefore quick and easy!

You can find the earlier TRI materials that we published in this thread, under the tab Updates & Videos.

Influencing UK Healthcare Policies for Tinnitus
We’ve been preparing for months to be a stakeholder in the UK health authority NICE’s consultation on their new guidelines for tinnitus assessment and management. You can read more about the project in this thread.

NICE has now sent us the draft guidelines for our feedback, and we are putting something together for the deadline of 1 November. Before that time, we’ll put our feedback up in the thread above, for you to comment on if you want. @TuxedoCat and @Candy are compiling our feedback and doing an awesome job!

TinnitusPlay – Our Own Sound App
I think I mentioned it in one of my previous updates, but we are veeeery close to launching our own sound app, called TinnitusPlay. It will be available in the App Store soon, we’ll tell you more once it’s launched.

BTA Conference
I attended the BTA’s annual Conference and Expo in London mid-September. They were two very different days, the first being targeted mainly at healthcare professionals and the second at people with tinnitus. I typed up my experiences (I wouldn’t exactly call it a report, haha) in this post, where I also attached what I found to be the two most interesting presentations.

TIN-ACT Meeting
I attended a meeting of the TIN-ACT research consortium, which we are a member of, in Nottingham (UK) last week. I am planning to write a blog post on it, but very briefly: Definitely some interesting research projects going on there to learn more about the basic mechanisms of tinnitus and even some potential new treatments. You can find my previous blog post on TIN-ACT here.

If you’ve read to the end of this, thank you, and please let us know what you think!

 

7 October – 3 November

NICE Feedback Submitted
With a big thank you to all in the community who gave their feedback, Tinnitus Hub has formally submitted to NICE (UK health authority) our feedback on their draft guidelines for tinnitus assessment and management. This means, that the Tinnitus Talk community has played its part in trying to influence the healthcare policies that directly affect us as patients. Read more about it here.

Thanks @Mister Muso, @derpytia, @Watasha, @Emma33, @Frédéric, @Agrajag364, @Autumnly, @chamferman, @Greg Sacramento, and @another sean for your feedback! And thank you to @TuxedoCat and @Candy for taking a leading role in this project!

TIN-ACT Research Meeting
A few weeks ago (see previous post above), I attended a TIN-ACT meeting in Nottingham. Because it’s part of our mission to keep you guys informed on what’s going on in the research community, I wrote this blog post about it.

Neuromod Interview
Many have been waiting for a long time to hear more about Neuromod’s new tinnitus treatment Lenire. Well, we got the scoop for you. Last Friday, we published a long interview with Neuromod, as a podcast episode. Our Patreon supports got advance access to the episode, everyone else got access a week later, meaning it's now available to all. You can listen and comment here.

Involving YOU in Tinnitus Research!
We are starting a new project in order to get YOU at the table with researchers, and us – the tinnitus community – directly setting research agendas. We want more direct patient involvement in research, and it will be our top priority for 2020 and beyond. We don’t yet know all the ins and outs, but we’re kicking off the discussion with this thread, so please join in! There's already been some riveting discussion and fresh new ideas proposed.

 

What started as weekly updates then changed to bi-weekly updates and then to monthly updates... And now, suddenly, it’s been 5 months since I’ve written here! AARRGGGHH!!! Sorry guys, it’s been difficult keeping up. On 1 January, I started working again full-time and while I remain equally committed to my Tinnitus Hub volunteer work, it’s just been a lot harder to find the time.

Well, at least this means there’s loads to tell you, because we certainly haven’t been sitting still. What happened since November?

SUPPORT/TREATMENTS​

Launch of the TinnitusPlay Sound App
We launched our own app! TinnitusPlay is a sound generating app. It does not just offer standard masking tracks but also science-based sound techniques that offer some tinnitus patients longer-term relief; although more testing is needed on this. It’s completely free. Read more about it here.

Lenire User Experience Project
Starting in the spring of 2019, we approached members who were going to try out the newly launched Lenire device and we asked them to fill in surveys about their experience. We wanted to gather some independent evidence on this treatment, so that all of you guys can make a more informed judgement. We are now a few weeks away from publishing our findings; in the meantime, you can read Lenire user testimonies here.

RESEARCH – NEW PROGRAMMES​

Launch of the UNITI Research Consortium
In January, I traveled to Athens, Greece, because I had been invited to the kick-off meeting of a new EU-funded tinnitus research consortium called UNITI. As part of the Advisory Board, I get to… well, give advice, I guess. We were however a bit disappointed in the set-up of the programme, since it only studies existing tinnitus treatments, no new ones. After discussing this openly with the coordinator of the consortium, we decided we should still stay on board, because we are the only patient representatives there and we want to represent the patient voice. Read more about UNITI here.

RESEARCH – GATHERING DATA FOR A CURE​

We believe that tinnitus research should be cure-focused, and we are playing our part in driving the research forward.

Tinnitus & The Body – Our Biggest Data Collection Effort Ever!
We’ve done several surveys in the past, gathering data about people’s tinnitus to help push research forward. We just closed our latest survey, called Tinnitus & The Body, which gathered data on a range of health conditions that might be related to tinnitus. Read more about the survey here (now closed). We managed to get over 7,000 completed responses, which, in the world of academia, is a true treasure trove! The data will be shared with various researchers, and we will also perform our own analysis.

Biobank Analysis Project
Impressive as our survey response numbers might be, what is really needed for tinnitus research is Big Data. No one has ever gathered Big Data on tinnitus, but very large samples do exist in various Biobanks, which gather data from hundreds of thousands of people on a broad range of health issues. Some of them include a question or two on tinnitus. So, a research acquaintance of ours came up with the idea of requesting data from Biobanks and trying to find new patterns. Read more about the initial idea here. Since then, we’ve had a couple of calls with the project group, and decided to use Biobank data to: 1) identify factors involved in how tinnitus changes over time (gets worse/better); 2) identify health- and environmental risk factors driving tinnitus; and 3) compare neuroimaging data between tinnitus patients and people without tinnitus.

Building Our Own Tinnitus Database
We’ve been thinking for a while now about how cool it would be if, instead of periodically running surveys, we could gather data directly from Tinnitus Talk. We could ask members to provide some basic data about their tinnitus when they sign up, and periodically request them to provide more data, directly from the Tinnitus Talk website. We submitted a grant proposal together with Patrick Neff to get some money to make this happen. Fingers crossed!

RESEARCH – INVOLVING YOU IN TINNITUS STUDIES​

Research Papers Voting
People with tinnitus need to have more of a voice in research; they should get to decide/influence how the research is set up, which topics are chosen, etc. We will be spending a LOT of time and energy to make that happen over the coming years. We have built up a good network in the tinnitus research community over the years, and we believe researchers will sit up and listen if we can provide them with clear data on what patients want. How? By voting on, or ranking, newly published academic papers on tinnitus. How useful are these papers really, from the patient perspective? See the results of our pilot voting round here.

Collaboration with Will Sedley
Dr. Will Sedley approached us, looking for a patient perspective on his new research idea, related to predictive brain processing. So, we opened up a thread where his idea is presented, and anyone can comment or ask questions. Will has been actively engaging with members on the thread.

Tinnitus Talk’s “Patient Expert Panel”
In line with the patient involvement – or Citizen Science – theme, we formed our own Patient Expert Panel. It consists of five Tinnitus Talk members who have an above average interest in research. The Panel is available for researchers to consult on their new research ideas, how to design their studies, how to interpret results, etc. So far, the Panel has worked with Dr. Will Sedley and Dr. Raj Shekhawat.

UNIQUE CONTENT – KEEPING YOU INFORMED​

We’re always developing new content for this community. It takes up a ton of hours, and we’re very proud to present you with our latest content ☺

Three New Podcast Episodes
Since November, we published three new podcast episodes:

• We spoke with Bryan Pollard, a staunch advocate for hyperacusis sufferers;
• We interviewed the folks from Hough Ear Institute, working on hearing regeneration;
• We published a special episode on tinnitus during the Corona crisis.

You can listen to all our episodes here. Please consider supporting our unique content production efforts through Patreon.

TRI 2019 Video Series
In May 2019, I was in Taipei at the Tinnitus Research Initiative (TRI) conference, where I interviewed many tinnitus researchers. We created 5-10 min videos of each researcher, including Susan Shore, Dirk de Ridder, and many more. A few more will be coming out still. Check them out on our video channel!

AWARENESS ​

Creating awareness around tinnitus often feels like an uphill battle. You hear so little about it in the media, and when you do, the condition is often downplayed. Consequently, there is very little political attention or funding for tinnitus, and healthcare professionals often do not take the condition seriously. That needs to change.

Tinnitus Week
We were very active during Tinnitus Week, with new blogs, videos and a strong social media presence throughout the week. Read more about it here.

Petition for Tinnitus Research Funding (UK)
We were very pleased to see the BTA take action to lobby UK politics on tinnitus. They organized a roundtable at the UK Parliament to garner political attention, and they launched a petition to ask Parliament to allocate more funding for tinnitus research. We supported these initiatives wholeheartedly, even publishing this video to get more signatures on the petition. Thankfully, the petition passed 100,000 signatures; hopefully, this means UK politicians will take notice! You can still sign the petition here.

NIDCD Feedback Process (US)
Earlier this year, we launched an effort to influence US political spending on tinnitus research. We did this by rallying up everyone on the forum to submit their input to the NIDCD’s strategic plan. An amazing working group of US-based Tinnitus Talk members spearheaded this effort by preparing guidance materials for other members. Read all about it here. Let’s hope our efforts end up making a difference!

If you’ve read to the end of this, thank you, and please let us know what you think!

All the best,
Hazel

 

Goodbye 2020, Welcome 2021

Wow, 2020 has certainly flown by! I have been super busy with my day job this year, and had some big changes in my personal life as well. It's frustrating, because our tinnitus work is so important to me, but there never seems to be enough time for it. That said, we have accomplished a lot this year, and considering it's all volunteer work, I should probably be less harsh on myself.

I created a little video with some of the highlights of our work in 2020. (There was a lot more actually, but I didn't want to make it a 30 minute video.)

​

If you can afford it, we would appreciate a donation of any size to keep this show on the road!

In spite of the everpresent shortage on time and resources, we are not giving up the fight. People with tinnitus deserve better treatments, and that will remain our primary goal. We will remain heavily research focussed, and do our part to push for more and better research. Our heart is in this for the long haul.

I will try to do better with updates in 2021, but cannot make any hard promises.
Thank you to all of those who have expressed their appreciation for our work this year, the recognition does make all the difference.

As always, we welcome your feedback & comments in our thread here:
Your Feedback on Our Monthly Update from Directors