Introducing Tinnitus Quest

[Frédéric]

Hello everyone,

I wanted to make a small contribution by (re)highlighting some exciting information. Unfortunately, there's no English translation provided by the researchers for the link below, so you may need to use a translation tool:

World Premiere: The Brain Revealed Like Never Before Thanks to the World's Most Powerful MRI (April 2, 2024)

In summary, here are the key points:

"To be able to image the human brain at an unprecedented level of resolution, whether healthy or pathological, and uncover new details of its anatomy, connections, and activity."

"By achieving such high resolutions, we can access information about neurons that was previously unattainable, enhancing our understanding of how the brain encodes mental representations, learning processes, and even the neuronal signatures associated with different states of consciousness."

"Ultra-fine anatomical information will help improve diagnosis and treatment for neurodegenerative diseases such as Alzheimer's and Parkinson's. Additionally, the Iseult MRI will facilitate the detection of faint signals—such as those from small molecules involved in cerebral metabolism, like glucose and glutamate—that are difficult to detect at lower magnetic field strengths. This data will directly aid in characterizing numerous brain pathologies."

I used the term rehighlight because I've previously shared news about this new MRI technology:

Research's Attempt to Objectively Assess Tinnitus

Sensory and Cognitive Components of Auditory Processing in Individuals With Tinnitus Purpose The main purpose of the study is to explore the auditory selective attention abilities (using event-related potentials) and the neuronal oscillatory activity in the default mode network sites (using...

www.tinnitustalk.com

Dr. Will Sedley Requesting YOUR Input — Predictive Brain Processing for Tinnitus

Dr. Will Sedley wants to work with this community to shape his research plans. We are thrilled to bring you this first-of-its kind, and hopefully groundbreaking, opportunity to give input directly to a tinnitus researcher on their research plans. Typically, in academic health-related research...

www.tinnitustalk.com

Reflecting on the earlier discussions in the thread "Research's Attempt to Objectively Assess Tinnitus," my opinion (which many share) was that we need advanced tools to study tinnitus pathophysiology. But which tools, and are they powerful enough? In retrospect, I realized that earlier technologies—like 1.5T and 3T MRI, EEG, MEG, ABR—were somewhat rudimentary. Many studies I've shared previously were, in effect, "shots in the dark" due to these limitations. I apologize for any undue hopes or frustrations these posts may have caused.

To be clear, I'm not guaranteeing this new MRI will perfectly reveal the pathophysiology of tinnitus, but it's worth exploring if the human body can safely tolerate such a strong magnetic field over the long term.

Humorously, some researchers have already used this MRI for less critical studies, like identifying brain differences between males and females.

My big wish is that tinnitus researchers, like Dirk de Ridder and Berthold Langguth, get a turn with this tool—ideally right after Alzheimer's and Parkinson's researchers. I'd even volunteer to be their test subject with this MRI, earplugs and earmuffs at the ready!

Best regards to all my fellow sufferers.

 

[UKBloke]

Hello everyone,

I wanted to make a small contribution by (re)highlighting some exciting information.

Hi Frédéric, I remember the first time you shared this info and being quite intrigued by it.

From the article: "Structural abnormalities could be associated with psychiatric disorders such as schizophrenia"

Along the way in my own research I've often felt there could be some kind of correlation between schizophrenia and tinnitus. It would certainly make sense in the context of neural gating - or better to say; electrical gating in general.

If researchers are using these new machines to study the structural abnormalities of schizophrenia, it would make sense for our side to request the inclusion of tinnitus data on candidate criteria. A simple yes or no question like, "Do you, or have you ever suffered from tinnitus?"

Perhaps "official" requests like this could be another avenue for Tinnitus Quest.

 

[IYIiKe]

You could make a similar call for epilepsy studies. I realize this is a tangential outreach angle, likely outside the scope of Tinnitus Quest. However, I like the idea of deriving data from other studies. With the growth of AI-driven and machine-learning research, those inputs could lead to potential "eureka" moments. Unfortunately, a lot of work on outreach and awareness would likely be necessary.

Since Alzheimer's and other neurological disorders tend to attract more funding and research volume, it makes sense that playing the numbers game could yield some valuable data in the distant future. However, the challenge lies in deriving meaning from simple yes/no responses. As we progress in understanding the different etiologies and origins of tinnitus, knowing that someone experiences ringing in their ears alone may not be very beneficial. The set of questions needed to provide meaningful insights would be quite extensive, especially for research that isn't specifically centered on tinnitus.

 

[Nick47]

You could also look at Fibromyalgia and Chronic Fatigue Syndrome, as both have high rates of tinnitus. The former 30-50%.

 

[Nick47]

We need this broad audience to help generate momentum, both in terms of funding and awareness, toward finding a cure.

@Hazel, I completely understand, and I had missed this perspective entirely. You're correct; he is a very good ambassador for the organization, as he's engaging to listen to, well-mannered in interviews, and comes across in a way that viewers can warm to.

However, in terms of his track record and future proposals, no.

I tried to see things differently after that meeting a few months back, but I'm still reaching the same conclusions. There is now evidence of both pathophysiology and promising hints at effective treatment methods. While the understanding of pathophysiology still needs development, significant findings have been published in the literature over the past 20 years.

He also mentioned that he needed to review the data from Susan Shore's trial, even though it was published over a year ago. He was planning to release data on the TU Delft project next month, yet it appears he hasn't even started it.

Overall, he seems a bit dispirited, tired, and out of ideas. His views on Neurosoft were fair, as we have no results yet to assess its feasibility. He cannot have missed Dr. Hamid Djalilian's work, yet he never comments on it or seems interested in developing something based on preclinical evidence. If a treatment doesn't involve the brain, he seems to steer clear of it.

Could he be working with TU Delft to produce similar devices? A recent study by a German group showed that 47% of participants experienced relief from just electrical stimulation of the ear canal. Perhaps a noninvasive device that sits in the ear canal could be an option for 30 to 50% of patients, a simpler and less surgical approach where patients are selected based on their response to the probe.

This is only my opinion, and others may disagree, which I'm open to. However, I believe we should build treatment ideas based on existing evidence rather than on philosophy and theory alone.

His proposal of a "War on Tinnitus" seems strange. Half a dozen noninvasive electrical stimulations, a wildflower extract, ecstasy, and LED lights for €700,000? You'd have to look hard to find value in that. This amount could pay for the salaries of seven ENTs who could expedite ongoing trials.

 

[Muggumbo]

@Hazel, I completely understand, and I had missed this perspective entirely. You're correct; he is a very good ambassador for the organization, as he's engaging to listen to, well-mannered in interviews, and comes across in a way that viewers can warm to.

However, in terms of his track record and future proposals, no.

I tried to see things differently after that meeting a few months back, but I'm still reaching the same conclusions. There is now evidence of both pathophysiology and promising hints at effective treatment methods. While the understanding of pathophysiology still needs development, significant findings have been published in the literature over the past 20 years.

He also mentioned that he needed to review the data from Susan Shore's trial, even though it was published over a year ago. He was planning to release data on the TU Delft project next month, yet it appears he hasn't even started it.

Overall, he seems a bit dispirited, tired, and out of ideas. His views on Neurosoft were fair, as we have no results yet to assess its feasibility. He cannot have missed Dr. Hamid Djalilian's work, yet he never comments on it or seems interested in developing something based on preclinical evidence. If a treatment doesn't involve the brain, he seems to steer clear of it.

Could he be working with TU Delft to produce similar devices? A recent study by a German group showed that 47% of participants experienced relief from just electrical stimulation of the ear canal. Perhaps a noninvasive device that sits in the ear canal could be an option for 30 to 50% of patients, a simpler and less surgical approach where patients are selected based on their response to the probe.

This is only my opinion, and others may disagree, which I'm open to. However, I believe we should build treatment ideas based on existing evidence rather than on philosophy and theory alone.

His proposal of a "War on Tinnitus" seems strange. Half a dozen noninvasive electrical stimulations, a wildflower extract, ecstasy, and LED lights for €700,000? You'd have to look hard to find value in that. This amount could pay for the salaries of seven ENTs who could expedite ongoing trials.

I definitely agree with your comment on the non-invasive device. Something simple and inexpensive like that may help a lot of tinnitus sufferers.

 

[IYIiKe]

You could also look at Fibromyalgia and Chronic Fatigue Syndrome, as both have high rates of tinnitus. The former 30-50%.

I know we're getting a bit off topic as we go deeper into this, but six months after developing tinnitus, I was diagnosed with benign fasciculation syndrome—essentially benign muscle twitching. It's theorized to potentially be related to potassium channelopathy. I'm sure there's a connection somewhere, but when I think of a targeted outreach for treatment, it would likely focus on more prominent conditions, like Alzheimer's, first.

 

[Wouter De Blaere]

@Hazel, how was the pitch with the young researchers on October 10th?

 

[J96]

Hey! Yes, I recall speaking to Dr. Galazyuk at the 2023 ARO conference. Of course he's free to apply for a grant once we open up for applications.

One thing I want to note, not be a bummer or anything, is that there have by now been quite a few drugs that seemed promising in animals but failed in humans. Not to say we should stop trying of course, but I just want to manage expectations.

Interesting. I've never heard of her, but will look her up!

Of course. Personally, I don't think this is a silver bullet for typical, stable tinnitus. With new research emerging over the past year, it seems more likely to benefit reactive tinnitus, hyperacusis, and visual snow syndrome (VSS). This treatment appears to target the inferior colliculus (IC) and/or the thalamo-cortical neural network rather than the dorsal cochlear nucleus (DCN).

Denovo Biopharma currently has these pills in trials for another disorder, but there is evidence supporting their potential to reduce sensory hyperactivity. It might be worth reaching out to the company to see if some pills could be purchased for trial purposes.

 

[IYIiKe]

Hey @Hazel, I know you're likely busy with life and everything, but I was wondering if you could share a sentence or two about any promising news that might be coming from Tinnitus Quest in the near future?

 

[Hazel]

Hey @Hazel, I know you're likely busy with life and everything, but I was wondering if you could share a sentence or two about any promising news that might be coming from Tinnitus Quest in the near future?

Thanks for asking. There's no research news yet, because we need time to raise enough funds to start giving out grants. So the progress so far is kind of boring organizational stuff -- which nevertheless are very exciting for us, as all of it brings us closer to our goal of silencing tinnitus.

In the past few months, we've raised about $150k. We also have a pledge for $1M. That one will only come through after we successfully apply for tax exempt status in the Netherlands (a lot of our work is boring admin and accounting stuff, unfortunately). At the same time, we're applying for 501(c)3 status in the US.

We've also successfully launched our Instagram and organized three live Q&A sessions with researchers, which you can find on our website. We also launched Stories with videos about tinnitus experiences, including from artists -- and we're hopeful that we can work our way up to ever more famous artists this way.

And don't forget we have our Ask Us Anything event on Saturday! The whole board of Tinnitus Quest will be there and you can ask us about fundraising, transparency, research philosophy, and more. Register here: https://tinnitusquest.wistia.com/live/events/dm8kebjiie

 

[EDDTEKK]

Will today's Ask Us Anything session be recorded? I won't be able to attend, but I'd like to watch it later. Thanks for letting me know!

 

[Wouter De Blaere]

Thank you, @Hazel and @Markku, for the wonderful interview yesterday.

I had a small idea. There are 41,000 members on this forum, though I realize not everyone visits on a monthly basis. However, the visibility of Tinnitus Quest on the forum seems quite low. There used to be a banner, but unfortunately, it is no longer there.

Here is my point: if all 41,000 members saw a banner every day, it would serve as a reminder about the organization. Even a small contribution of €10 from each member could generate €410,000 in funding, possibly on an annual basis.

So long story short, I would suggest bringing the banner back.

 

[IYIiKe]

I just wanted to say thank you for the Q&A!

Unfortunately, some of the recent events have been scheduled at times when, with young kids, I haven't been able to participate. However, it's fantastic to have access to the recordings and to know there are people actively working toward a solution.

Thank you, TQ!