Tinnitus Week 2023: Tinnitus Talk Goes ARO!

#TinnitusWeek — Message from @Hazel



This feels in some sense like the most unprepared we have ever been for Tinnitus Week, considering it’s already half-way through Tinnitus Week and we have not even informed you of our activities. Sorry for that! There is a good reason though, and we surely have not been sitting still

As usual, we have consulted with ATA and BTA (now rebranded Tinnitus UK) in advance to learn what they are planning and whether there’s any potential for collaboration. But Tinnitus UK is going with a ‘prevention’ theme – which seems less appropriate for this audience – and ATA is going with some general ‘awareness’ theme – which seems a bit vague.

We wanted to do something sophisticated. Something that shows we take our audience seriously and fulfills the hunger for better information on research and treatments. So, we worked on a video explaining how to assess the quality of studies that evaluate tinnitus treatments. Assessing the outcomes of a clinical trial for example is no straightforward matter and there are so many ways to misrepresent or misinterpret the data.

Unfortunately, we ran out of time. We wrote the script for said video, but recording would have taken another few hours – time we did not have because we were also preparing to attend the ARO (Association for Research in Otolaryngology) conference. And then we realized that attending ARO is actually a huge deal. We will be the only tinnitus patient organization there. We need to focus on getting the maximum value out of our presence there for the benefit of this community!

So, there you have it. We still plan to publish the “how to evaluate tinnitus studies” video, just later. For now, we will inform you about what we are doing at ARO.

I was on a plane for 10 hours yesterday to Miami, from where I will travel to Orlando for the ARO conference, to be joined by our own @TuxedoCat. I am jetlagged as hell and have some challenging commitments related to my day job. But I will go out later today and record a video about ARO. In the meantime, you can → learn more about the conference in this thread.

To be continued…

 

This space is reserved for an update.

 

This space is reserved for an update.

 

2 nice things I found during the past week:

- Hyperacusis Central made a short video called "Sound of Tinnitus" to show others what tinnitus sounds like
- The Texas Roadhouse will donate all profits from Monday to the ATA

 

@Hazel, good luck this weekend and I hope you enjoy it. Tinnitus UK informed me in December they would focus on the Biobank. It's been nothing short of a disaster what they have done.

To add to that, CEO Deanne Thomas parted ways after a couple of months:

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

Lynne Gillon seems to be the thorn to the cushion.

 

Wonder if they've had their Lizz Truss moment...

Anyhow, looks like they're having a grand time at Tinnitus Week.

 

So much for being a "patient" organisation. How sad.

 

Quite.

Personally I can't wrap my head around being a patient with a condition that science is trying to solve whilst at the same time lacking the ability to objectively measure it (bar the Bionics Institute and Emilie Cardon).

If an 'official' patient representative group like Tinnitus UK were to get real and at least address this fatal flaw in 'the science' I'd have a lot more respect for them. But to my mind when they take money from Lenire all it does is show a fundamental lack of understanding for the situation. No wonder we go round in circles.

 

Thank you @Hazel for being an active member of the community. However, I honestly think these organizations are not ones that should be collaborated with. They have shown numerous times, with proof, how they have embezzled donation money, for example, $~3.5 million donated to the ATA in 2020-2021, less than $120,000 donated to research, half of which was some weird research about sound therapy and sleep - where's the money?

They haven't updated their website in years, they obviously show, with their behavior, their disinterest in anything related to research and development, and only embezzling money donated to them for research. I'm honestly shocked how Texas Roadhouse hasn't seen any of this. One quick look at ATA's public tax records raises so many questions.

Also, them advertising Lenire? Seriously? This is obviously a ploy/shady partnership to make money on people's suffering. Disgusting.