Why the Hostility in the Research Section?

[FGG]

Round window membrane.

That's good news. I didn't know that. Surfactants are hydrophobic right?

I think they are partially hydrophobic.

 

[JohnAdams]

OTO-413 is being formulated by the same company that has pioneered Menieres drugs. These drugs HAVE to reach the apex of the cochlea in therapeutic doses to be effective. They even patented a single injection-slow release method using their own vehicle (I can't recall the surfactant's name off hand) that guarantees as such.

I think you're severely underestimating what Otonomy can accomplish with regards to cochlear penetrance.

Awesome.

 

[JohnAdams]

Because people are dying.

 

[MrCrybaby]

Hey all,

Sorry for my insensitive and poorly thought out title. I didn't think it through and, especially in the wake of the recent death in our community, it's pretty mean.

What I specifically meant to reference was personal insults towards Dr. Shore and doubt about her ability to take the device to market, really intense criticism/hate of Hough for not going to phase 2 even though they have reached out to us and told us that it's only for lack of funding, and pessimism towards other drugs with promising trials. I did not mean to imply that waiting is easy or that the needs of those with severe tinnitus is not urgent.

This condition sucks, and I now better understand how frustrated with the system you are (FDA approving drugs that gave you tinnitus, but taking forever to release a cure etc.) and how hard waiting gets (I'm really new to this waiting game).

I've learned my lesson and I'll definitely think more carefully before next time I make a post here. I'm just a dummy who has tinnitus and came here for support, and I hope I haven't burnt bridges.

Thanks for reading my text wall.

 

[JohnAdams]

Hey all,

Sorry for my insensitive and poorly thought out title. I didn't think it through and, especially in the wake of the recent death in our community, it's pretty mean.

What I specifically meant to reference was personal insults towards Dr. Shore and doubt about her ability to take the device to market, really intense criticism/hate of Hough for not going to phase 2 even though they have reached out to us and told us that it's only for lack of funding, and pessimism towards other drugs with promising trials. I did not mean to imply that waiting is easy or that the needs of those with severe tinnitus is not urgent.

This condition sucks, and I now better understand how frustrated with the system you are (FDA approving drugs that gave you tinnitus, but taking forever to release a cure etc.) and how hard waiting gets (I'm really new to this waiting game).

I've learned my lesson and I'll definitely think more carefully before next time I make a post here. I'm just a dummy who has tinnitus and came here for support, and I hope I haven't burnt bridges.

Thanks for reading my text wall.

You don't need to be sorry. You asked a question. We answered it.

 

[Autumnly]

Hey all,

Sorry for my insensitive and poorly thought out title. I didn't think it through and, especially in the wake of the recent death in our community, it's pretty mean.

What I specifically meant to reference was personal insults towards Dr. Shore and doubt about her ability to take the device to market, really intense criticism/hate of Hough for not going to phase 2 even though they have reached out to us and told us that it's only for lack of funding, and pessimism towards other drugs with promising trials. I did not mean to imply that waiting is easy or that the needs of those with severe tinnitus is not urgent.

This condition sucks, and I now better understand how frustrated with the system you are (FDA approving drugs that gave you tinnitus, but taking forever to release a cure etc.) and how hard waiting gets (I'm really new to this waiting game).

I've learned my lesson and I'll definitely think more carefully before next time I make a post here. I'm just a dummy who has tinnitus and came here for support, and I hope I haven't burnt bridges.

Thanks for reading my text wall.

No worries, just this post goes to show that you're genuinely sorry and open to changing how you think about certain things. That's really all anyone could ask for. If you want to change the title, you could also reach out to a moderator. Thank you for clarifying what you originally meant.

I also agree with you that insulting researchers who are working on finding medical treatments won't help. I get the frustration but instead, we should focus on raising money for research. Bryan Pollard from Hyperacusis Research even said: "In the US I have specifically been told by our Government Agencies that they look critically to Patient Advocate Organisations to determine their priorities. They literally said 'hey, if there's a condition that has no Patient Advocacy Group, it's highly unlikely we would fund anything for that problem'." source

 

[FGG]

No worries, just this post goes to show that you're genuinely sorry and open to changing how you think about certain things. That's really all anyone could ask for. If you want to change the title, you could also reach out to a moderator. Thank you for clarifying what you originally meant.

I also agree with you that insulting researchers who are working on finding medical treatments won't help. I get the frustration but instead, we should focus on raising money for research. Bryan Pollard from Hyperacusis Research even said: "In the US I have specifically been told by our Government Agencies that they look critically to Patient Advocate Organisations to determine their priorities. They literally said 'hey, if there's a condition that has no Patient Advocacy Group, it's highly unlikely we would fund anything for that problem'." source

Tinnitus needs lobbyists. It's the only way imo.

 

[JohnAdams]

Tinnitus needs lobbyists. It's the only way imo.

We have William Shatner.

 

[FGG]

We have William Shatner.

"Dislike"

 

[Yuuls]

That Hough Ear pill is probably the best thing out there with a potential to heal noise induced tinnitus and it's just sitting on a damn shelf in a refrigerator. Gears aren't turning because of financial issues which is something that none of us should accept.

Maybe once the kids of the 1% develop tinnitus from attending Coachella/etc every year and celebrating every birthday in a nightclub we will see more initiative.

I don't want more people to have this terrible condition but I really hope with the internet and younger people getting it there will be more initiative for a treatment. At this point my nerves would feel a bit more at ease in knowing there is a treatment rather than a cure (which, fingers crossed, does come eventually).

Once able $$$ bodied young people $$$ start being more vocal about this, hopefully research kicks into gear even more. Unfortunately the government only seems to care about issues where there is $$$ involved and unfortunately older people and veterans probably don't fall into the $$$ category

 

[PeteJ]

That's a fair point.

I would take poison as long as it's quick.

Why are you complaining about negativity? This is the most neglected condition by far - by society, governments, the healthcare industry etc.

 

[MrCrybaby]

I would take poison as long as it's quick.

Why are you complaining about negativity? This is the most neglected condition by far - by society, governments, the healthcare industry etc.

If you read through the whole thread you will see that this has all been explained to me and I have changed my opinion. As well, I clarified that by "bad vibes" I was speaking about hostility and brutal pessimism vs having a hard time and wanting things faster.

@Markku could you please do me a favour and change "bad vibes" in the title to "hostility"? I don't want this to be dragged up again because I chose a poor title.