Brilliant news Deb, thanks for the update. Are you going to attend?The Bionics Institute just emailed me with an update.
They are hosting an online Zoom event; Measuring tinnitus - detecting an invisible condition on Tuesday, 1 March 1-2 pm AEST.
Dr. Mehrnaz Shoushtarian (Lead Tinnitus Researcher) is going to explain how they are able to measure tinnitus using recorded brain activity, and how this could help people with tinnitus in the future.
Victoria Didenko will give a patient perspective.
Dr. Sol Marghzar (Doctor of Audiology/Clinical Director of Hearing Doctor in California) will discuss issues around diagnosis, and offers advice for people living with tinnitus.
Thanks for sharing!Here's the recording of last week's Zoom webinar from the Bionics Institute:
The Bionics Institute need funds to continue their tinnitus research. They have approached me to give a patient perspective, along with my thoughts about Mehrnaz's work with the diagnostics. This will be incorporated into a letter, along with further info Mehrnaz will add around her research. The letter will be sent out in a variety of formats; including social media platforms. Little nervous about the professional photo shoot.
So, I put my hand up to give a patient perspective on tinnitus for an upcoming fundraising campaign with the Bionics Institute for their diagnostics project.Thanks for sharing!
I started a monthly donation to Bionics Institute (not much, but something).
Go go go! Bring back life! Tinnitus is a condition that won't kill you? Well, not totally and physically, but I sure have died quite a bit.
I started crying when Victoria in the presentation said tinnitus did kill her, because I could relate. Glad to have my son around – he comforted me.
And for the record; confirmed again I do get a pretty hefty tinnitus spike (my high-pitched electric sizzle in my left ear) when crying. Maybe something for Bionics Institute to measure.
Seriously, let's say they can measure tinnitus, what exactly are they going to do with that information? Or would the location of the tinnitus be exposed and give doctors enough information on what type of drug/treatment is needed to fix the region of the brain or ear?So, I put my hand up to give a patient perspective on tinnitus for an upcoming fundraising campaign with the Bionics Institute for their diagnostics project.
I have been contacted by local media (Geelong Advertiser paper) and scheduled to film a story about tinnitus and the Bionics Institute tomorrow with Channel 7 News.
Below is the newsletter that will be circulating.
View attachment 50184
View attachment 50185
Dear Debra,
Imagine ringing and hissing in your head...
It's 24 hours a day, 7 days a week. So you can't sleep. You can't eat. It stops you from working. You just can't escape this auditory torment.
If you have a really severe case, you end up with depression... like Deb has.
No matter what you do, you're trapped and tormented by this noise.
The worst thing is that no scientifically valid test exists to diagnose or measure your tinnitus. You can help us develop a breakthrough test and silence the torment of tinnitus!
Such a test would make a huge difference to someone like Deb. Her tinnitus got to the stage where life became unbearable.
"It's like a gas leak in my head. I've got multiple layers of hissing... you feel trapped in your head, trapped and tormented."
"It's kicked up my anxiety and depression. Every day now is about coping, not living."
Deb has tried everything to relieve tinnitus – white noise, masking, cognitive behaviourial therapy, hearing aids and natural remedies. Nothing has worked.
Deb admits she's thought about ending her life when tinnitus got really bad. That's why she believes a proper diagnostic test and treatment is so important. The new tinnitus test uses special imaging technology in a brain cap to shine near infrared light onto the head.
This measures changes in blood oxygen levels in your brain when it responds to a sound. It scientifically shows the presence of noise. Our algorithm then analyses this data to identify whether a patient has tinnitus... and how severe it is.
It can diagnose tinnitus with 78% accuracy and distinguish between mild and severe tinnitus with 87% accuracy.
This has never been done before!
Our team has done a magnificent job bringing the test this far. Now your help is needed to conduct further trials and develop an everyday version of the test that doctors can easily use in the clinic.
Please DONATE NOW and your gift will be matched! You will help to develop the breakthrough tinnitus test so urgently needed by people like Deb.
You'll help give relief to people who live with the 24/7 misery of constant ringing and buzzing in their ears. Together, you and I can take the first steps to stop the torment of tinnitus and silence it forever!
With best wishes,
View attachment 50186
Mr Robert Klupacs
CEO, Bionics Institute
Depending on how precise the measurement is, I'm guessing they could measure objective changes in tinnitus for potential treatments. A pretty amazing tool to be honest.Seriously, let's say they can measure tinnitus, what exactly are they going to do with that information? Or would the location of the tinnitus be exposed and give doctors enough information on what type of drug/treatment is needed to fix the region of the brain or ear?
It would be great for actually measuring the efficacy of potential treatments. We all know how problematic THI is.Seriously, let's say they can measure tinnitus, what exactly are they going to do with that information? Or would the location of the tinnitus be exposed and give doctors enough information on what type of drug/treatment is needed to fix the region of the brain or ear?
There could be so many benefits. One would be the improving the ability to qualify for disability. Right now it is very difficult to qualify for disability based on tinnitus. If we had an objective measure of tinnitus severity, it could really help.Seriously, let's say they can measure tinnitus, what exactly are they going to do with that information?
I think we need diagnostics. Exposure also aids awareness promotion. Qualifying for disability is also a good point.Depending on how precise the measurement is, I'm guessing they could measure objective changes in tinnitus for potential treatments. A pretty amazing tool to be honest.
See now that's what I'm concerned with. Do you think we possess these potential treatments? Like do we have the stuff already available and we just need to know where to put it at (what area of the brain)? I'm going to be quiet after this as I feel I'm being a bit too negative, I just want us to already have stuff ready and not need another 100 years to get the ingredients ready, so by the time the Bionics Institute can objectively measure or pin point where tinnitus is coming from we can just apply the stuff 123. Anyway, what do I know. May the powers be with us all.It would be great for actually measuring the efficacy of potential treatments. We all know how problematic THI is.
Bizarrely Deb, your interview popped up on my search engine last night. The article mentioned a lady called Deb, and I immediately thought, ah that can only be our Deb in Australia. Hope you're doing OK.So, I put my hand up to give a patient perspective on tinnitus for an upcoming fundraising campaign with the Bionics Institute for their diagnostics project.
There was an article about this in the mainstream press today (The Daily Telegraph in Sydney). Just a short article saying that 1 in 10 suffer from tinnitus and the Bionics Institute has developed a test which is 87% accurate...Bizarrely Deb, your interview popped up on my search engine last night. The article mentioned a lady called Deb, and I immediately thought, ah that can only be our Deb in Australia. Hope you're doing OK.
No we really don't have any treatments yet (fingers crossed with Dr. Shore). Not being able to measure the damn stuff is part of that problem. This won't cure anyone but it should help speed up the process. Science is rarely about breakthroughs but rather baby steps. This is one of those baby steps.See now that's what I'm concerned with. Do you think we possess these potential treatments? Like do we have the stuff already available and we just need to know where to put it at (what area of the brain)? I'm going to be quiet after this as I feel I'm being a bit too negative, I just want us to already have stuff ready and not need another 100 years to get the ingredients ready, so by the time the Bionics Institute can objectively measure or pin point where tinnitus is coming from we can just apply the stuff 123. Anyway, what do I know. May the powers be with us all.
Another thing: why aren't big companies/pharmas grasping at this trying to be part such a remarkable opportunity? Wait a minute. Time out. Why isn't the national hearing institute or whatever government healthcare etc responsible for the health crises of their country not picking up the bill for the Bionics Institute? You would think the US military would scoop this right up and have them working for them...
I've read many articles over the years relating to various tinnitus markers in EEG. But then there always seems to be another, EEG study to measure tinnitus, preparing to recruit participants. It's all very perplexing.Is it possible to detect tinnitus via EEG? Does anybody know this? What is the accuracy with it?
@Deb, is this you on the article?
Indeed there seems to be some work in this direction, for instance:Is it possible to detect tinnitus via EEG? Does anybody know this? What is the accuracy with it?
There's a Chinese study in which the authors have mentioned the application of EEG for analysing a group of people with tinnitus vs. normal controls.Is it possible to detect tinnitus via EEG? Does anybody know this? What is the accuracy with it?
@Deb, is this you on the article?
Have just watched this video and can highly recommend. It addresses many relevant questions with good solid answers and doesn't just skip over stuff. I really like Dr. Sol Marghzar and his comments about Lenire. Sounded to me like he was kind of throwing the gauntlet down to Neuromod regarding their claims of efficacy.Here's the recording of last week's Zoom webinar from the Bionics Institute:
That is a coincidence.Bizarrely Deb, your interview popped up on my search engine last night. The article mentioned a lady called Deb, and I immediately thought, ah that can only be our Deb in Australia. Hope you're doing OK.
Oh great! Did you ever get results from the trial?Hey @DebInAustralia. I also did this trial. It was over 2 years ago and hadn't really thought much about it until I read a small article in the paper today.
Brai3n and Dirk de Ridder do qEEG prior to offering tDCS or tPNS (pink noise) treatments, it's the best measurement that exists so far I think. If Bionics Institute can come up with something better with fNIRS, it's even better for us.@Mentos, re: qEEG.
No. I wasn't sure if they were supposed to contact me or me them. I guess it's the latter. Is that what you did?Oh great! Did you ever get results from the trial?
Yes. I asked Mehrnaz. She was very obliging.No. I wasn't sure if they were supposed to contact me or me them. I guess it's the latter. Is that what you did?
Thanks. I'll get in contact with them.Yes. I asked Mehrnaz. She was very obliging.
Awesome.Thanks. I'll get in contact with them.