My Posting Place

[urgentresearch]

Seriously though, is there a good reason?

From their 2015-2018 pdf thing:

Turning discoveries into treatments - We're making rapid progress towards understanding the causes of hearing loss and in developing strategies to both protect and restore hearing, and silence tinnitus. But progress in moving promising new approaches into clinical trials has been slow. This type of research – to refine a promising new treatment to a point where it can be safely tested in patients – is called translational research. The challenge is two-fold. First, many academics lack the experience and know-how needed to translate their research into treatments. Second, as there are no drugs on the market, the route through clinical trials, gaining regulatory approval, and getting hearing therapeutics adopted by healthcare providers is unknown and largely untested. This means that the pharmaceutical industry, whilst recognising the huge commercial opportunities, is reluctant to invest in an area where the perceived risks are high. We need to encourage those companies willing to invest in developing new treatments for hearing loss and tinnitus, and support academics to translate the outcomes of their research into patient benefit.

....... tl;dr still not sure what happened to the gerbil cure... got a link to the research paper?

 

[urgentresearch]

https://www.nhs.uk/news/medical-practice/stem-cell-deafness-cure-but-only-in-gerbils/#conclusion

Restoration of auditory evoked responses by human ES-cell-derived otic progenitors

 

[urgentresearch]

https://www.nhs.uk/news/medical-practice/stem-cell-deafness-cure-but-only-in-gerbils/#conclusion

Restoration of auditory evoked responses by human ES-cell-derived otic progenitors

Funding
Funding Agency Grant Number
Action on Hearing Loss (RNID)
Deafness Research UK
Wellcome Trust
088719
Medical Research Council
ESTOOLS
Wellcome Trust VIP award
RNID
Action on Hearing Loss
515:SHE:MR
G44
Medical Research Council
G0700785
G0900919
G0801059

 

[urgentresearch]

Funding
Funding Agency Grant Number
Action on Hearing Loss (RNID)
Deafness Research UK
Wellcome Trust
088719
Medical Research Council
ESTOOLS
Wellcome Trust VIP award
RNID
Action on Hearing Loss
515:SHE:MR
G44
Medical Research Council
G0700785
G0900919
G0801059

Here's what's happening now:

https://www.ncbi.nlm.nih.gov/pubmed?linkname=pubmed_pubmed_citedin&from_uid=22972191

Seems like they worked their way up from gerbils to dogs??

 

[urgentresearch]

 

[JohnAdams]

I'm starting to feel dissassociated from this community. We have no impact on the tinnitus world. We might as well just sit around and wait for capitalism to provide some kind of drug for us.

 

[Agatha]

I'm starting to feel dissassociated from this community. We have no impact on the tinnitus world. We might as well just sit around and wait for capitalism to provide some kind of drug for us.

I trust capitalism will take care of it eventually, too much money to be had from finding a cure. Too bad every hearing loss cure company are working on their own and not together, it will take a while

 

[Gman]

I trust capitalism will take care of it eventually, too much money to be had from finding a cure. Too bad every hearing loss cure company are working on their own and not together, it will take a while

Cures are actually considered bad for profit by capitalists. Treatments provide ongoing, sustainable profits. There are many articles out there that outline this. It's a real fact, not just cynicism.

 

[Agatha]

Cures are actually considered bad for profit by capitalists. Treatments provide ongoing, sustainable profits. There are many articles out there that outline this. It's a real fact, not just cynicism.

I would take a treatment that I have to take daily to silence my tinnitus

 

[JohnAdams]

I would take a treatment that I have to take daily to silence my tinnitus

it can't happen that way without bad side affects.

 

[Daniel Lion]

Ditto, feel the same way bro. I'm glad your skin is ok, and it sounds like the Shim master has worked a little magic. I'm pretty disillusioned now, and just working my ass off to keep my family afloat. My tinnitus is torturous, my hyperacusis has receded again. I just left town to watch my kid compete in an international soccer tournament. He's a total bad ass, and is strong like a bull, like his dad actually. I'm doing my best not to get in trouble now, with the law or the looney bin. I'm going to cool down. Now I'm going to cool down, wait for John Adams updates, maybe some neuromodulation. I can't do drugs, because they make me crazier than I already am. I can't drink for the same reason. I hope you all keep posting, stay positive.

 

[JohnAdams]

Ditto, feel the same way bro. I'm glad your skin is ok, and it sounds like the Shim master has worked a little magic. I'm pretty disillusioned now, and just working my ass off to keep my family afloat. My tinnitus is torturous, my hyperacusis has receded again. I just left town to watch my kid compete in an international soccer tournament. He's a total bad ass, and is strong like a bull, like his dad actually. I'm doing my best not to get in trouble now, with the law or the looney bin. I'm going to cool down. Now I'm going to cool down, wait for John Adams updates, maybe some neuromodulation. I can't do drugs, because they make me crazier than I already am. I can't drink for the same reason. I hope you all keep posting, stay positive.

I just don't understand what the hold up is. There are several promising avenues to cure hearing loss and it's like they make breakthroughs and then never follow through.

 

[Contrast]

Guys it's time MPP moves on to great things, the next level of advocacy.

We just can't camp out on this forum forever, we have to ascend.

 

[ajc]

Guys it's time MPP moves on to great things, the next level of advocacy.

We just can't camp out on this forum forever, we have to ascend.

It's time to habituate and get on living our lives like the normies do.

 

[Markku]

Guys it's time MPP moves on to great things, the next level of advocacy.

We just can't camp out on this forum forever, we have to ascend.

I actually have a task for you and anyone interested.

We're going to attend the Tinnitus Research Initiative conference in Taipei this May.

There's a thread about it here:
https://www.tinnitustalk.com/threads/tinnitus-research-initiative-tri-2019-conference.34029/

I'm probably for this year's conference again going to design some flyers to hand out to researchers.

At the 2016 conference we had this for our table:

Back then we had just organized our first survey with over 5,000 responders, which was a major milestone at the time:

https://www.tinnitustalk.com/threads/tinnitus-hub-talk-survey-results.14295/

So presenting those results was part of our agenda then, as well as just giving out general information about what we do here, and networking, building connections.

What should we do for this year?

Is there some specific information you think we should share or talk about?

There's going to be a great assortment of researchers attending, so what do you think?

 

[Hazel]

Back then we had just organized our first survey with over 5,000 responders, which was a major milestone at the time:

https://www.tinnitustalk.com/threads/tinnitus-hub-talk-survey-results.14295/

So presenting those results was part of our agenda then, as well as just giving out general information about what we do here, and networking, building connections.

What should we do for this year?

Is there some specific information you think we should share or talk about?

There's going to be a great assortment of researchers attending, so what do you think?

Yes, we'd love your input folks! Just keep in mind that we are a very small organisation with very limited resources. In other words, we don't have the kind of power to influence where research funding goes, or what researchers choose to study, or how to get new treatments to market quickly. Just a caveat for you guys to understand before you respond!

What we can do is inform researchers about what goes on in the online tinnitus community, propose ways we can collaborate, etc. As long as you don't expect miracles, we'll do our best to move the field forward.

 

[Markku]

I'm sure @Contrast would appreciate highlighting some up-to-date information/hypotheses on the definition of hyperacusis, hidden hearing loss, etc.

By the way, Contrast, were you aware of this PhD student? We also happen to be a partner organization in TIN-ACT:

https://tinact.eu/recruitment/

Research Project 2, Copenhagen, Denmark

Characterization of supra-threshold listening deficits in listeners with tinnitus

 

[threefirefour]

I actually have a task for you and anyone interested.

We're going to attend the Tinnitus Research Initiative conference in Taipei this May.

There's a thread about it here:
https://www.tinnitustalk.com/threads/tinnitus-research-initiative-tri-2019-conference.34029/

I'm probably for this year's conference again going to design some flyers to hand out to researchers.

At the 2016 conference we had this for our table:

View attachment 27689

Back then we had just organized our first survey with over 5,000 responders, which was a major milestone at the time:

https://www.tinnitustalk.com/threads/tinnitus-hub-talk-survey-results.14295/

So presenting those results was part of our agenda then, as well as just giving out general information about what we do here, and networking, building connections.

What should we do for this year?

Is there some specific information you think we should share or talk about?

There's going to be a great assortment of researchers attending, so what do you think?

I wish there was a way to pin something to the top of a post so it's the first thing someone sees on all pages.

 

[Markku]

I wish there was a way to pin something to the top of a post so it's the first thing someone sees on all pages.

I added a little tab for "Latest News" (working title, feel free to suggest otherwise) - and you're welcome to send me content to put in there if you come up with something.

 

[threefirefour]

I added a little tab for "Latest News" (working title, feel free to suggest otherwise) - and you're welcome to send me content to put in there if you come up with something.

View attachment 27690

Wow I didn't know we could actually do that it works great.

Best addition to MPP since Be nice, okay.

 

[Contrast]

@Markku no I haven't heard of him but it seems awsome what he is doing. Phenomenal infact.

I am busy now but the answer is yes, I'll work on what I need to do.

 

[JohnAdams]

Given that, listen to what @Ed209 says.

Ed isn't all knowing. He tried to convince me not to even go to Korea.​

To me this screams scam, and a potential bodge job on your ears. Be really careful!

Not only was this not a scam, there was no "bodge job" on my ears, even after 72 injections.

My tinnitus has improved, especially in my right ear. Ed209 does have good advice sometimes, but I think he's just like anyone else and not listening to his advice may have been one of the best decisions of my life.

 

[Ed209]

Ed isn't all knowing. He tried to convince me not to even go to Korea.​

Not only was this not a scam, there was no "bodge job" on my ears, even after 72 injections.

My tinnitus has improved, especially in my right ear. Ed209 does have good advice sometimes, but I think he's just like anyone else and not listening to his advice may have been one of the best decisions of my life.

I'm definitely not all-knowing and wouldn't claim to be. I only had good intentions towards you as Dr Shim is hard to vet having no published work. There was no way of knowing what would happen to you, however, you took a huge risk and came out the other side so I give you credit (as I said in the other thread). Doing what you did takes a huge leap of faith and a lot of guts.

All the best to you.

 

[Daniel Lion]

Thanks bro. I leave t minus one week. The flight is kind of scaring me. But otherwise I'm looking forward to it. Need to leave the USA. I probably won't come back.

@Daniel Lion dude that's really nice of you, I may reach out in due time. I do need to brush up on my Spanish but I'm actually meeting another American down there who runs some kind of holistic retreat. Hopefully she'll be a good guide. I'll def take all your advice in too.

Dude, I put the word out to my brother in Holland. He's gonna send me a list of places worth going to for yoga, surfing, river rafting. May have some job leads, but no promises there. Believe me, Spanish is piss easy, you will be bilingual within a year, guaranteed. I am waiting on the info, as soon as I get it, I'll forward it to you. I believe in you man, your young, be strong, follow your dreams. You kick ass, don't forget that. I'll be in touch soon, stay strong, be well, be cool, keep the faith.
Daniel. The American, you mentioned...sounds awesome...good idea...you're gonna be fine bro.

 

[JohnAdams]

I'm definitely not all-knowing and wouldn't claim to be. I only had good intentions towards you as Dr Shim is hard to vet having no published work. There was no way of knowing what would happen to you, however, you took a huge risk and came out the other side so I give you credit (as I said in the other thread). Doing what you did takes a huge leap of faith and a lot of guts.

All the best to you.

Actually I alluded about you to him and he said you were right to question this. So there's that. I basically had to have an education in a medical field and access to subscription based medical journals and do many hours or research to arrive at my conclusion. Most people don't have those resources to make such a decision.

I can plug my right ear and hear no tinnitus now. Left, still has some tinnitus, and my HA seems to fluctuate every few days or so. I just wish this would get more attention because it has a promising scientific validity and now I have experienced it myself.

I'm getting pretty tired of all these goofball organizations and researchers that don't even keep up with anyone else's research bumbling around in the dark being like "a duhr der be no cure a durh" when there most likely is. I'm not 100% cured but the treatment has improved my symptoms.

 

[JohnAdams]

too much money to be had from finding a cure.

are you kidding me? there's more money in non curative treatments than any cure.

 

[JohnAdams]

The closest thing to getting IGF-1 into our ears is PRP, and in America that stuff is unregulated. All we need is for someone to convince an ENT/otolaryngologist to prepare some and treat a willing patient with it.

Myself, if I decide that I want more treatment in my left ear I will most likely just fly back to Seoul.

I do wonder how much a doctor would charge a patient here in the US for a treatment like this.

 

[JohnAdams]

That's exactly what Dr. Shim did to me.

Actually I was wrong, that treatment is giving the bone marrow through IV. It's going to fail.

 

[Agatha]

The closest thing to getting IGF-1 into our ears is PRP, and in America that stuff is unregulated. All we need is for someone to convince an ENT/otolaryngologist to prepare some and treat a willing patient with it.

You could get it done in Mexico? There are doctors in Mexico that does anything for money

 

[Contrast]

MPP is now 100% devoted to research, we are done playing games. Let the journey towards promoting life changing medicine and stopping scams begin.