My Posting Place

[Contrast]

@threefirefour was affectionately nicknamed the forum Sperg after routinely visiting habituation success story threads and leaving distasteful comments associated with rudeness and provocative behavior towards users on Tinnitus Talk Support Forum who had habituated.

 

[TuxedoCat]

That's a question we will have to wait for the answer to when Frequencytx and others working on this technology release their data. Plain and simple.

@JohnAdams, I need your advice. Every month I'm donating a small amount to tinnitus research. I just realized I overlooked hearing restoration research. Can you recommend a researcher to whom I can donate? I don't think donations can be made to companies like Frequency. Thanks, TC

 

[Agrajag364]

Those people on Facebook can be awful, I tried helping someone by posting a link to the mutebutton q&a to give them hope and the admin immediately banned me

Gosh, why?

 

[Ed209]

Gosh, why?

I'm not a member of any of the Facebook support groups but I hear stuff like this all the time. @Samantha R tried to put the link to Danny's Memorial Fund on one of them and she had a hard time. Can't remember if they deleted the link, but I remember her saying how difficult they were.

They're a very strange bunch!

 

[Contrast]

@JohnAdams, I need your advice. Every month I'm donating a small amount to tinnitus research. I just realized I overlooked hearing restoration research. Can you recommend a researcher to whom I can donate? I don't think donations can be made to companies like Frequency. Thanks, TC

Mass Eye and Ear
https://www.masseyeandear.org/online-donation-form

They are supporting Prof Liberman's research on repairing cochlear ribbon synapses and even studying the pathologies of noise induced pain. Make sure you mention Prof Liberman's research in the comment box.

 

[TuxedoCat]

They are supporting Prof Liberman's research on repairing cochlear ribbon synapses and even studying the pathologies of noise induced pain. Make sure you mention Liberman's research!

OK, Contrast. Thanks. I know we have Mass Eye and Ear among the Worthy Causes here on TT. That will make it easy. -TC

 

[Contrast]

I'm not a member of any of the Facebook support groups but I hear stuff like this all the time. @Samantha R tried to put the link to Danny's Memorial Fund on one of them and she had a hard time. Can't remember if they deleted the link, but I remember her saying how difficult they were.

They're a very strange bunch!

they are outright cbt/trt shills.

 

[JohnAdams]

@JohnAdams, I need your advice. Every month I'm donating a small amount to tinnitus research. I just realized I overlooked hearing restoration research. Can you recommend a researcher to whom I can donate? I don't think donations can be made to companies like Frequency. Thanks, TC

It kinda looks like Decibeltx and Frequencytx are the major players in this field and are private companies with ideas they have developed and are now moving towards the market. I dont think they are accepting donations. In terms of hearing restoration, I'd say maybe Heller Labs. I'd think for the overall cause the best bang for your buck would be a group that's trying to raise awareness of prevention of hearing damage. Even if we can restore hearing damage, preventing ot in the first place is far far far more important. So basically. I dont know. If there was a way to donate to speed up the release of Decibel and Frequency's products I'd say that but I dont think that's possible. Maybe you could donate to @threefirefour to change his avatar?

 

[JohnAdams]

@JohnAdams, I need your advice. Every month I'm donating a small amount to tinnitus research. I just realized I overlooked hearing restoration research. Can you recommend a researcher to whom I can donate? I don't think donations can be made to companies like Frequency. Thanks, TC

Yeah go with what @Contrast said.

 

[TuxedoCat]

Yeah go with what @Contrast said.

Personally, I'd rather donate to Dr Liberman because he also does hyperacusis research. I don't doubt Stefan Heller is brilliant , but I'm not sure how much he knows about tinnitus. Maybe I'll alternate months so I can give a little to each. Thanks, TC

 

[Contrast]

It kinda looks like Decibeltx and Frequencytx are the major players in this field and are private companies with ideas they have developed and are now moving towards the market. I dont think they are accepting donations. In terms of hearing restoration, I'd say maybe Heller Labs. I'd think for the overall cause the best bang for your buck would be a group that's trying to raise awareness of prevention of hearing damage. Even if we can restore hearing damage, preventing ot in the first place is far far far more important. So basically. I dont know. If there was a way to donate to speed up the release of Decibel and Frequency's products I'd say that but I dont think that's possible. Maybe you could donate to @threefirefour to change his avatar?

threefirefour isn't going to let a bigot tell him what or what not his profile pic should be.

 

[TuxedoCat]

they are outright cbt/trt shills.

Indeed, there's one called Tinnitus Friends Positive Support Group. I've heard the admins there are on a power trip, its very TRT based which means you can't talk about research or have hopes for a cure or mention prays or God or a god or anything like that or they will block you.

 

[threefirefour]

Indeed, there's one called Tinnitus Friends Positive Support Group. I've heard the admins there are on a power trip, its very TRT based which means you can't talk about research or have hopes for a cure or mention prays or God or a god or anything like that or they will block you.

How do sites like this even survive?

 

[JohnAdams]

threefirefour isn't going to let a bigot tell him what or what not his profile pic should be.

so I'm a bigot because I think it's gross seeing an image of an old fat naked man having sex?

 

[Markku]

As we speak, speaking of groups, just received a message that someone (other than TuxedoCat) had posted our Rauschecker podcast onto the Tinnitus Sufferers Facebook Group and it was immediately removed.

 

[Watasha]

@Markku Do we know if this is a result of a violations of terms and conditions for these groups or some other factor?

 

[threefirefour]

As we speak, speaking of groups, just received a message that someone (other than TuxedoCat) had posted our Rauschecker podcast onto the Tinnitus Sufferers Facebook Group and it was immediately removed.

TSFB has terrible mods. Shilling habituation and support is one thing, but why on Earth would they straight up be borderline anti-tinnitus research? Probably afraid of losing members

 

[Jack Straw]

 

[Agrajag364]

Indeed, there's one called Tinnitus Friends Positive Support Group. I've heard the admins there are on a power trip, its very TRT based which means you can't talk about research or have hopes for a cure or mention prays or God or a god or anything like that or they will block you.

Lol I wish they would stop mentioning God on the one I am on. It's quite American heavy and they tend to do that. I respect their faith but I don't want to be told to thank God.

 

[Agrajag364]

As we speak, speaking of groups, just received a message that someone (other than TuxedoCat) had posted our Rauschecker podcast onto the Tinnitus Sufferers Facebook Group and it was immediately removed.

What???!! That's bonkers.

 

[Contrast]

FUCK IM CAME SO CLOSE TO BRINGING DOWN THIS SCAMMER! https://www.tinnitustalk.com/threads/tonaki-tinnitus-protocol-—-scam.30239/page-3

 

[threefirefour]

Gmail account check once again ruining everything

 

[incelitus]

lol at the gayz with tinnitus thread
should have named mpp "are there autists with tinnitus"

 

[Samantha R]

I'm not a member of any of the Facebook support groups but I hear stuff like this all the time. @Samantha R tried to put the link to Danny's Memorial Fund on one of them and she had a hard time. Can't remember if they deleted the link, but I remember her saying how difficult they were.

A couple of responses to my post mentioned it could be a scam, they seemed paranoid that they are going to be ripped off, or just couldn't care less about donating.
I don't know why I bothered posting about Danny's fund in that group.

 

[TuxedoCat]

Lol I wish they would stop mentioning God on the one I am on. It's quite American heavy and they tend to do that. I respect their faith but I don't want to be told to thank God.

That's funny. I guess everyone that got kicked off the other group for saying Thank God came over to your group!

 

[Jack Straw]

As we speak, speaking of groups, just received a message that someone (other than TuxedoCat) had posted our Rauschecker podcast onto the Tinnitus Sufferers Facebook Group and it was immediately removed.

I don't understand this? Why are we fighting against each other instead of with each other....

It is definetly a control/power thing the admins have on these Facebook groups.

 

[Ed209]

I don't understand this? Why are we fighting against each other instead of with each other....

It is definetly a control/power thing the admins have on these Facebook groups.

Jack, this is something that I really struggle to comprehend and highlights how fragmented the tinnitus community is. I know from experience that getting stuff shared amongst other groups is sometimes nigh on impossible, and this includes a bigger, well-known, charity as well.

It's infuriating to think that there are people/groups that don't want to share things that are to the benefit of us all. It makes no sense. In some cases, I honestly believe that egos take over, so if they can't take the credit for it, they aren't interested. It's crazy. Anything that is tinnitus related and stands to help the entire community shouldn't have any resistance at all, and to know that this happens is just maddening.

 

[TuxedoCat]

I don't understand this? Why are we fighting against each other instead of with each other....

Actually, I found Tinnitus Sufferers not to be so bad as long as what I post is not asking for donations. And, Tinnitus Sufferers, the largest of the groups is very tightly moderated for that. It's something you agree to when you sign up. Of course, I didn't pay attention to that and posted Danny's fund and Rauscheckers fundraiser there. Penny Wise, the moderator , messaged me to remind that it wasn't allowed. So she took it down, but didn't throw me out!. When the ATA posted that awful article about tinnitus fading away, I posted on Tinnitus Sufferers and they responded in full force on the ATA's facebook page. So you just have to get a feel for what works and what doesn't.

The other FB group that's worth posting to is Science-Based Tinnitus Support Group. There don't seem to be any restrictions on fundraisers and there are a few on there who may contribute. They also like Professor Rauschecker.

Part of the problem may be the feed. Once posted, the message moves down the feed and is forgotten.

Ideally, it would be nice if each FB group posted a stationery link to TT since it is not FB based. Then we could just post announcements and it would be easy access. But, that may be pie in the sky.

 

[Contrast]

 

[Contrast]

Why did I post it twice?