Let's Increase Tinnitus Research Funding in the US — Our Input for NIDCD's Strategic Plan

[OnceUponaTime]

Yeah yeah yeah done

Bahahaha...

Thanx Bob!!!!
I know I can count on you.
​

(Had to whip this one to do it.)

 

[OnceUponaTime]

@Hazel This is hard work you have me doing here!! Hahahaha....
I thought this was going to be easy getting people to send in their answers.

 

[aot]

Come on, people!

 

[OnceUponaTime]

Come on, people!

Thank you @aot for helping me out here...haha.
This is a tough crowd! (always wanted to use the cyclops emoji... hahaha)

Send your answers ASAP.
Let's Go!!!

 

[GoatSheep]

@Markku @Hazel @TuxedoCat

I received an initial reply from Dr. Whitelaw saying she would pass along my request and see if her contact was interested. I have not received any follow up since her initial response last Sunday.

I reached out to my mother today and she basically copy and pasted some general info from the VA intranet to me that was very disappointing. Apparently, she isn't even inquiring internally for me. Honestly, she hasn't been concerned or supportive over my issues so I'm not surprised.

Through her info though, I did find a couple quick searches and found this:

https://www.ncrar.research.va.gov/AboutUs/Staff/Feeney.asp

National Center for Rehabilitative Auditory Research (NCRAR)

M. Patrick Feeney, Ph.D.
Director, NCRAR
Professor, OHSU Otolaryngology, Head and Neck Surgery

503-273-5306
patrick.feeney@va.gov

I called the number and it is his direct line. I did not leave a message. Presently, I don't have a direct contact at TT like a phone number or email to provide him so my role as a middle man would only complicate things. You are likely already aware of this organization and/or individual. Sorry. Perhaps Dr. Whitelaw will eventually get back to me.

 

[Contrast]

The NIH has already made it CRYSTAL CLEAR that they are hell bent on funding CBT and ACT until the cows come home. They have already made plans to keep the CBT and ACT biz going strong for the next four years.

https://www.kpwashingtonresearch.or...kpwhri-3-heal-grants-totaling-over-15-million

Furthermore, it's NOT JUST TINNITUS! Other diseases get the same BS. Psychologists and psychiatrists run medical academia at the highest levels. It's going to take unification and awareness across the board from sufferers with horrifying health problems to raise awareness.

 

[Markku]

The NIH has already made it CRYSTAL CLEAR that they are hell bent on funding CBT and ACT until the cows come home. They have already made plans to keep the CBT and ACT biz going strong for the next four years.

https://www.kpwashingtonresearch.or...kpwhri-3-heal-grants-totaling-over-15-million

Furthermore, it's NOT JUST TINNITUS! Other diseases get the same BS. Psychologists and psychiatrists run medical academia at the highest levels. It's going to take unification and awareness across the board from sufferers with horrifying health problems to raise awareness.

I'm just trying to better understand you here. What would you suggest we do, Contrast...? I'm sure you don't think tinnitus patients should just resign to the idea that things are out of our control and, in this specific case, not even attempt to affect change in NIDCD policy? Do you have some concrete steps in mind we could try to explore?

In any case, I sincerely hope you are going to fill the NIDCD form. Your submission could consist solely of your own concerns and thoughts, or you could take cue from the suggestions our hard-working team of volunteers provided in the first post of the thread. We need tinnitus patients to take real action - posting on a forum unfortunately doesn't achieve much when it comes to trying to change policies and funding strategies. I really appreciate and value the kind of rallying @OnceUponaTime and some others are doing, that's the spirit we need more of.



Finally, I would suggest for you to check the below link which might give you a better idea of the kind of research NIDCD has funded. I see a lot of non-CBT and non-ACT research there.

Obviously, and I hope this goes without saying, we are never going to recommend more CBT or ACT research being funded.

http://projectreporter.nih.gov/repo...D&ic_type=Funding&IC=NIDCD&fy=CP&state=&STCD=

 

[Contrast]

 

[KathyN48]

Done.

 

[serendipity1996]

I'm in the middle of filling this out, drafting my answers first. I will report back when completed (aiming for tomorrow).

 

[OnceUponaTime]

Done.

Thank you, Kathy!

I'm in the middle of filling this out, drafting my answers first. I will report back when completed (aiming for tomorrow).

Awesome!

 

[Tweedleman]

Done!

 

[annV]

Done!!!!!

 

[Adaś]

Submitted! Thanks for the effort and all the hints provided. You can find my answers below. I wanted to get them out to NIDCD ASAP so there may be some typos and "funny" English sentences, as I am not native speaker. Feel free to reuse them for the submission though.

1. What are the most significant scientific discoveries in hearing and balance, taste and smell, and voice, speech, and language that have occurred in the past five years? (Please provide references to scientific journal articles, if applicable.)

Let me start with a statement that I am long time (7 years) tinnitus sufferer and I will be giving my answers mostly related to tinnitus and associated hearing disorders, such as hyperacusis. I have learned about this survey from TinnitusTalk.com. To me most important and promising discoveries are substances such as FX-322 (Frequency Therapeutics), OTO-413 (Otonomy, Inc) and PIPE-505 (Pipeline Therapeutics), that can trigger hair cell, supporting cell and vestibulocochlear nerve regeneration and reverse sensorineural hearing loss and hopefully also alleviate or cure tinnitus. This expectation is supported by numerous hypotheses that tinnitus is most likely a side effect of sensorineural hearing loss and inner ear damage of different origins, e.g. acoustic trauma or ototoxic drugs.​

2. What are the unmet needs in current research and training that may impact hearing and balance, taste and smell, and voice, speech, and language?

First and foremost unmet need is funding. Tinnitus has staggering prevalence, i.e. affects 15% of Americans. 1-2% of Americans suffer from a severe form of tinnitus that excludes them from normal life activities, leads to depression and anxiety and often is a cause of suicide, as there is no cure or even single known and effective method to alleviate tinnitus or accompanied disorders such as hyperacusis. This creates enormous burden to the society and economy. Nevertheless this does not translate to the funding that is often lacking comparing to the research activities in the other fields, e.g. mental diseases like depression that receive 10-20 times more funding than hearing disorders, and NIH funding for tinnitus is rather non-existent.​

3. Describe the opportunities in hearing and balance, taste and smell, and voice, speech, and language that may be realized in the next five years.

There is certainly an opportunity to structure and make the tinnitus research more global. At the moment the tinnitus research community is scattered around the world and remains mostly unconnected, this applies also to the information about the prevalence. Another opportunities are in identifying objective measures of tinnitus and ideally biomarkers. Finally tinnitus research should get more media and public attention so it can easier gain funding. We have seen too many research projects that were stalled for months or even years because lack of funding and lack of interest from the big investors and the general public.​

4. What are the greatest challenges or barriers to progress in hearing and balance, taste and smell, and voice, speech, and language?

The greatest challenge is to either convince the pharmaceutical industry that the cure for tinnitus may create reasonable profits or finding alternative route to bring the cure available to everyone. At the moment there is a dissonance between tinnitus sufferers that expect and look for the cure, and the industry that is for some reason not very motivated to find one. This is explained by unclear tinnitus prevalence, many alternative theories of tinnitus pathophysiology, lack of measured and biomarkers, ambiguous definitions. This is where public institutions such as NIDCD and NIH must intervene, because clearly the free market and self-regulation cannot bring the cure to the sufferers. Additionally the pace of the current research is very slow due to the insufficient funding and visibility.​

5. What is the greatest public health need of individuals with disorders of hearing and balance, taste and smell, or voice, speech, and language that may be helped with additional research?

Apart from the cure, most important need is raising awareness and prevention. Most of us (tinnitus sufferers) learned about tinnitus when it was too late and the constant ringing in our ears became permanent part of our lives. Before the onset, we had a strong trust in the modern society that there should not be harm done leading normal life-style, listening to the music with freely available consumer devices, occasionally going to the concerts, commuting everyday using public transport (e.g. metro) or using commonly prescribed drugs. We have never received any clear warnings. There is strong disconnection between the risk factors and these who create them. There is no sense of the responsibility from these who create the risk, there is no legal obligation for such a responsibility. All of this creates a never ending source of the new sufferers, that learn about this horrible condition when it is too late for them. Finally, it is also very unfair and even unethical that the whole effort for finding the cure is now driven and often financed by the sufferers that never did anything wrong according to their knowledge and became the victims of the modern world.​

 

[OnceUponaTime]

Done!

Hey, Tweedleman! Thank you!

Done!!!!!

Thank you, Ann!

Submitted!

Great answers, Adas! Thank you!

\

​

 

[TuxedoCat]

Can we have friends/family that don't suffer from tinnitus send letters in as well or is this only for tinnitus/hyperacusis sufferers?

Glad you asked! Yes, Yes and Yes! Having Tinnitus is not a requirement!

 

[serendipity1996]

Completed it!

 

[FGG]

Just a reminder for those who have not done this yet, this has to be submitted by the end of the month.

 

[Ben S]

Done!!! Let's hope this actually lights a fire under the asses of those who can help us!

 

[AleNes]

Thanks guys

Submitted my comments and shared with fam.

 

[Zugzug]

Thank you so much @Hazel . I just submitted. The guidelines you provided were extremely helpful. Something that I added that I think is important is the results of this study:


Effect of Tinnitus Retraining Therapy vs Standard of Care on Tinnitus-Related Quality of Life: A Randomized Clinical Trial.

https://www.ncbi.nlm.nih.gov/pubmed/31120533

This study basically shows that TRT is no more effective than standard care. I emphasized that I am happy that some improve with TRT, but I pointed out that some of the improvements are people just getting better with time and that the "90% get better with TRT" claims are pretty fraudulent as a differential claim about the treatment.

I encourage others to fill it out.

 

[OnceUponaTime]

Completed it!

Thank you, Serendipity!

Done!!! Let's hope this actually lights a fire under the asses of those who can help us!

Thank you, Ben!
Let's hope it will!

I just submitted. The guidelines you provided were extremely helpful.

Thank you, Zugzug! Yes, the guidelines are super easy.
Hope more members submit their answers soon.

Thanks guys. Submitted my comments and shared with fam.

Thank you, AleNes!
Great idea sharing it with your family.

 

[OnceUponaTime]

 

[Larry4103]

I'm new to the forum. Glad to have found this thread, just finished my submission. Thanks to all involved!

 

[Cal18]

Filled this out - thank you for well-written info.

 

[OnceUponaTime]

I'm new to the forum. Glad to have found this thread, just finished my submission. Thanks to all involved!

Thank you, Larry!!!
Welcome to Tinnitus Talk!
Great first post!!!!

 

[Dive Master]

Done from Switzerland!
No, filling a form is not wufluflu contagious

 

[OnceUponaTime]

Filled this out - thank you for well-written info.

Great! Thank you so much for helping out.

Done from Switzerland!
No, filling a form is not wufluflu contagious

It is not and it takes only a few minutes.
Thank you, Dive Master!!

 

[Stiliyan Krastev]

Done. Hope it will have effect! We need to keep fighting! Great job to everyone envolved!

 

[Halsy]

Thanks for that list, Brightside. That's very encouraging. Hadn't really believed the chemistry route could be the way to go but it looks like I stand corrected. It should certainly help at any rate. I like the look of the FX-322 drug and will look into it later.

Thanks also for the heads-up on Lenire. I didn't realize there was a waiting list. I'll jump on that now. I was going to Europe for 2 months Apr/May before C19 started but will now be targeting for the Fall.