The Association for Research in Otolaryngology (ARO) 2023 MidWinter Conference

[Hazel]

We edited the next ARO video!

Dr. Daniel Polley is a name I've heard many times over the years of following tinnitus research. But to be honest, I did not know much more than that he was from Harvard University and ran a tinnitus research lab. Now, I finally had the opportunity and pleasure of meeting him at ARO. He was also kind enough to grant us an impromptu interview.

He talks about all the big questions of tinnitus research like are animal models really useful, what can we learn from imaging studies, how to identify a tinnitus biomarker, and what should be our therapeutic target for tinnitus.

​

Looking at Dr. Polley's publication record from the past few years, his focus has been on other aspects of hearing like auditory processing, acoustic trauma and loudness sensitivity. He assured us though that for the coming years he intends to focus more closely on tinnitus through the Lauer Tinnitus Research Center, of which he is the director. This will include new clinical trials for treatments, although he could not yet disclose specifics. We intend to invite him for a full length episode of the Tinnitus Talk Podcast to learn more.

 

[Nick47]

Dr. Polley gave some thoughtful responses about looking for biomarkers and developing therapies to disrupt the signalling.

I'm not sure which "sort of placebo controlled" trials on bimodal stimulation he was referring to?

 

[Gb3]

I'm not sure which "sort of placebo controlled" trials on bimodal stimulation he was referring to?

Two were discussed at the conference. Neosensory and Dr. Shore's device.

 

[Nick47]

Two were discussed at the conference. Neosensory and Dr. Shore's device.

Thanks. He then talks about them treating distress, similar to Prof. De Ridder.

 

[Nick47]

Networking:

• Contact between the NIDCD – the institute within the National Institute of Health that is responsible for conducting and funding tinnitus research – and Tinnitus Hub has been established. We now have a better idea of what potential channels for funding of tinnitus research are available.
  
• Three board members of Hyperacusis Research were present at the conference. They organized a symposium on hyperacusis. Tinnitus Hub and Hyperacusis Research agreed to collaborate on future projects together, regarding awareness raising and stimulating research.

I think this is positive indeed. One key area, that needed improving is collaboration between funding bodies and the community. I commented recently that the Tinnitus Hub Twitter page has recently acquired some significant followers in research and clinical practice. I appreciate it's all about time and resources keeping the Twitter active. I have recently realised that social media channels like Twitter, TikTok and Facebook have HUGE reaches.

Increasing our presence and activity on these may be beneficial. Even if it's just a link to new information on the Tinnitus Talk forums (ARO23, Palm Springs Hearing Seminar or a new Tinnitus Talk Podcast episode), researchers can decide if they want to look into it. For instance Dr. De Ridder was completely unaware of the 5-HT1A research at Birmingham that I posted about here on Tinnitus Talk.

Last year there were only 5 postings on the Tinnitus Hub Twitter page. The interviews @Hazel did at ARO 2023 have been excellent by the way. Even just posting a link to them on social media would suffice so researchers can see what's taking place and who is involved in what.

It may sound strange but just the process of signing up as a member to Tinnitus Talk can be an obstacle to some. People want quick and easy access to everything and want replies to questions answered in a few minutes. With 40 thousand members, I wonder how many view it passively through a Google search but never sign up? That was me for 7 years.

Being active on social media also increases the pool for donations.

 

[gotearsimhere]

Hi everybody,

I just had a talk with one of the 2023 ARO attendees via in-person appointment. I can attest to in-person what @Hazel's observations were about CBT at the ARO.

The ARO member I had an appointment with was Dr. William Slattery, of the House Ear Clinic in Los Angeles. For those that don't know, the House Ear Clinic is where the cochlear implant was first invented.

I went to see Dr. William Slattery for severe disabling pain hyperacusis. I have already had 3 ENTs writing notes saying I am totally medically disabled, one internist, one audiologist, and one anesthesiologist because I've tried every treatment.

Dr. Slattery saw this, then acted like I was malingering because hyperacusis could never be this bad. He then said to do CBT...

Strangely, he knew what hyperacusis research was, and advised me to follow their recommendations, but he also refused to admit that hyperacusis setbacks are real. Which is against their recommendations...

He also said straight up, when asked about Prof. Thanos Tzounopoulos and potassium channels, "yah, I've seen it, and I don't believe in that. CBT is the treatment for pain hyperacusis, you have to learn to live with it better, and ordinary sounds won't hurt you."

This interaction almost felt like a simulation...

I feel there are very much two camps in the ARO; CBT vs neuro-physiology. It is a very tension-y feeling to experience this in a social interaction, lol.

 

[Nick47]

Dr. Slattery saw this, then acted like I was malingering because hyperacusis could never be this bad. He then said to do CBT...

I'm speechless. Yet he was at the conference. Did he see Megan Beers Wood's presentation on Type 2 afferent neurons? The bloke needs culling!

As for potassium modulators, I'm interested in them, but not super expectant. If they worked, even in theory, I would have expected to see them in tinnitus human trials by now.

 

[Stayinghopeful]

As for potassium modulators, I'm interested in them, but not super expectant. If they worked, even in theory, I would have expected to see them in tinnitus human trials by now.

It's easier and quicker to get these approved for epilepsy and then just use them off label if there is plenty of anecdotal evidence of them helping tinnitus.

Between Dr. Shore's device and these potassium channel openers, I'm hopeful we will find some relief.

 

[gameover]

Hi everybody,

I just had a talk with one of the 2023 ARO attendees via in-person appointment. I can attest to in-person what @Hazel's observations were about CBT at the ARO.

The ARO member I had an appointment with was Dr. William Slattery, of the House Ear Clinic in Los Angeles. For those that don't know, the House Ear Clinic is where the cochlear implant was first invented.

I went to see Dr. William Slattery for severe disabling pain hyperacusis. I have already had 3 ENTs writing notes saying I am totally medically disabled, one internist, one audiologist, and one anesthesiologist because I've tried every treatment.

Dr. Slattery saw this, then acted like I was malingering because hyperacusis could never be this bad. He then said to do CBT...

Strangely, he knew what hyperacusis research was, and advised me to follow their recommendations, but he also refused to admit that hyperacusis setbacks are real. Which is against their recommendations...

He also said straight up, when asked about Prof. Thanos Tzounopoulos and potassium channels, "yah, I've seen it, and I don't believe in that. CBT is the treatment for pain hyperacusis, you have to learn to live with it better, and ordinary sounds won't hurt you."

This interaction almost felt like a simulation...

I feel there are very much two camps in the ARO; CBT vs neuro-physiology. It is a very tension-y feeling to experience this in a social interaction, lol.

To be honest, if I was suffering as much as you do and I was treated as you were, I think I would try to give him tinnitus + hyperacusis by setting off a firecracker next to his ear, following up with an air horn. Such a heartless fuck needs to get a taste of what he thinks is "malingering".

 

[UKBloke]

Strangely, he knew what hyperacusis research was, and advised me to follow their recommendations, but he also refused to admit that hyperacusis setbacks are real. Which is against their recommendations...

If Dr. Slattery said this, then his comment is also contrary to the actual real-life experience of David Treworgy, one of the board members of Hyperacusis Research Ltd. David recently published an extremely heartfelt piece in Hearing Health magazine.

As a side note, on TRT for hyperacusis, he said the following (from the article):

I suppose he should've done CBT instead and everything would've worked out just fine.

 

[Nick47]

It's easier and quicker to get these approved for epilepsy

Why?

 

[yeezysqueezy]

Why?

There's no good objective tests for tinnitus or hyperacusis yet. And clinical trials are insanely expensive. If they see good anecdotal evidence after off label use, they're more likely to pursue FDA approval for another indication.

Hi everybody,

I just had a talk with one of the 2023 ARO attendees via in-person appointment. I can attest to in-person what @Hazel's observations were about CBT at the ARO.

The ARO member I had an appointment with was Dr. William Slattery, of the House Ear Clinic in Los Angeles. For those that don't know, the House Ear Clinic is where the cochlear implant was first invented.

I went to see Dr. William Slattery for severe disabling pain hyperacusis. I have already had 3 ENTs writing notes saying I am totally medically disabled, one internist, one audiologist, and one anesthesiologist because I've tried every treatment.

Dr. Slattery saw this, then acted like I was malingering because hyperacusis could never be this bad. He then said to do CBT...

Strangely, he knew what hyperacusis research was, and advised me to follow their recommendations, but he also refused to admit that hyperacusis setbacks are real. Which is against their recommendations...

He also said straight up, when asked about Prof. Thanos Tzounopoulos and potassium channels, "yah, I've seen it, and I don't believe in that. CBT is the treatment for pain hyperacusis, you have to learn to live with it better, and ordinary sounds won't hurt you."

This interaction almost felt like a simulation...

I feel there are very much two camps in the ARO; CBT vs neuro-physiology. It is a very tension-y feeling to experience this in a social interaction, lol.

So sorry you had to deal with this person. I also have pain hyperacusis and these people are despicable. If I were malingering, pain hyperacusis was the last disease I would "choose."

 

[Stayinghopeful]

Why?

A good question to ask Prof. Thanos Tzounopoulos since he believes the same, and which was mentioned earlier on in the thread.

However, since you asked "why," it's probably because there's really no objective measure for tinnitus, whereas an EEG can be used for epilepsy.

 

[gameover]

If Dr. Slattery said this, then his comment is also contrary to the actual real-life experience of David Treworgy, one of the board members of Hyperacusis Research Ltd. David recently published an extremely heartfelt piece in Hearing Health magazine.

As a side note, on TRT for hyperacusis, he said the following (from the article):

View attachment 54602

I suppose he should've done CBT instead and everything would've worked out just fine.

Truly a sobering read. I am really angry Jastreboff gets to push his "therapy" that's not only not proven - but proven to not work! What a travesty. This quack's therapy needs to go way of lobotomy - as the article suggests. Unfortunately, in the meantime the quack basks in the glory of his "research" and collects the $$$.

On top of it, the local "respected" audiologist was going out of his way to lure me into his modified-TRT therapy at a bargain price $200 per televisit (excluding cost of any noise making devices). If you prepay 12 weeks, you get one visit free! Yay!

Additionally, I am convinced he lied straight from his teeth that he has tinnitus. He kinda slipped it in at the very end after he "sold" me the therapy. What a scum.

I met several people with tinnitus during my "journey". I can tell by their reaction who is telling the truth and who is lying.

 

[StoneInFocus]

He has recently been focusing his energy on creating a new chemotype — what he calls a "retigabine-like" molecule — which should act on the same mechanism, targeting the same channels. In fact, he has several candidates that could work, and aims to narrow it down to a lead candidate in the next 6 months. Of course, he cannot reveal exactly what the new molecule(s) are, for reasons of intellectual property.

Does he mean the same channels as in the same channels as Retigabine, namely Kv7.2/3/4/5, or the same as RL648_81, which targets Kv7.2/3 specifically?

 

[Hazel]

Does he mean the same channels as in the same channels as Retigabine, namely Kv7.2/3/4/5, or the same as RL648_81, which targets Kv7.2/3 specifically?

He didn't mention RL648_81 at all, and I simply assumed he was referring to retigabine, but I guess I cannot be 100% sure.

 

[StoneInFocus]

He seemed unconcerned about who will be first to reach the market, stating that "I just want to see something on the market that could help tinnitus sufferers, something they can try out."

Of course, Xenon's drug, if it is approved, would be for epilepsy, but could still be prescribed by doctors off-label for tinnitus. In fact, Thanos considers this perhaps a more expedient way to get a drug on the market for tinnitus, and suggested that he might consider a similar route for his drug.

I am honestly a bit sketched out by Thanos saying that. In his 2020 interview, he told us that he and his team only had the funds to take a drug to Phase 1 of a clinical trial, and that the rest of the money had to come from "venture capitalists". Why would these investors stick their neck out for yet another Kv7-based anticonvulsant drug when XEN1101 is already in Phase 3 for epilepsy? If he really wanted his drug to enter the market, he should be concerned about this!

RL648_81 was already their lead compound since 2016. And now this guy is telling us he found out there are 'toxicity issues' with it? Correct me if I'm wrong, but it seems like Thanos is not very serious in his efforts of finding a cure for tinnitus. And if he is, he sure is taking his damn time. Maybe deep in his heart he already knows he will never get to develop the drug, but just enjoys his occupation as a researcher and the prestige that comes with it too much to tell us the truth.

I am sorry for being a pessimist, but these are just my 2 cents. Love to hear what y'all think.

(By the way, this isn't a reaction to you personally, @Hazel!)

 

[UKBloke]

I am sorry for being a pessimist

I think your point of view is a realistic one given that Xenon Pharmaceuticals and Susan Shore have been quietly beavering away in the background and are now practically over the finishing line.

Thanos has contributed some brilliant academic tinnitus research for which I'll always hold him in high esteem, but in terms of offering up any new or effective treatment he's increasingly become an outlier to that in my mind.

 

[ImmortalWombat]

Nice! Keep us updated

 

[gameover]

We edited the next ARO video!

Dr. Daniel Polley is a name I've heard many times over the years of following tinnitus research. But to be honest, I did not know much more than that he was from Harvard University and ran a tinnitus research lab. Now, I finally had the opportunity and pleasure of meeting him at ARO. He was also kind enough to grant us an impromptu interview.

He talks about all the big questions of tinnitus research like are animal models really useful, what can we learn from imaging studies, how to identify a tinnitus biomarker, and what should be our therapeutic target for tinnitus.

​

Looking at Dr. Polley's publication record from the past few years, his focus has been on other aspects of hearing like auditory processing, acoustic trauma and loudness sensitivity. He assured us though that for the coming years he intends to focus more closely on tinnitus through the Lauer Tinnitus Research Center, of which he is the director. This will include new clinical trials for treatments, although he could not yet disclose specifics. We intend to invite him for a full length episode of the Tinnitus Talk Podcast to learn more.

I rewatched the interview. I wish we could have learned more what the lab Dr. Polley is leading has in the pipeline.

I disagree with the last part about "distress". I am sorry, there is no rocket science there. While the phantom sound is not a physical sound, it is subject to (subjective of course) loudness. For people like me with reactive and variable tinnitus, the distress is directly proportional to loudness. Simple as that! When loud, I want to kill myself. When quiet, I can function pretty normally. It is understandable people may have different tolerance levels for the perceived loudness, but so what.

The research needs to be squarely aimed at reducing the loudness, and it is pretty clear from the current body of research it has everything to do with neuron excitability and/or reduced inhibition which Dr. Polley talks about. No need to talk about "distress" which seems like an open invitation for CBT/TRT scammers to keep peddling their crap.