Tinnitus Classification for the General Public

[Hazel]

And RIGHT THERE is the reason why nobody will take tinnitus seriously.

Why would they?
"There's nothing to be afraid of".
What you are doing is putting yet another nail in the coffin of those, who are desperate for a cure.
Great job.

Thank you. I do think we're doing a great job. Well, at least we're doing more than you

Seriously though, you totally took my quote out of context and seem to have misunderstood what audience the guide is aimed at. But I'm getting a bit tired of explaining myself to people who don't want to understand and are too complacent to do anything meaningful for the tinnitus community themselves, instead preferring to complain about others not doing a good job.

 

[Wolfears]

Thank you. I do think we're doing a great job. Well, at least we're doing more than you

Seriously though, you totally took my quote out of context and seem to have misunderstood what audience the guide is aimed at. But I'm getting a bit tired of explaining myself to people who don't want to understand and are too complacent to do anything meaningful for the tinnitus community themselves, instead preferring to complain about others not doing a good job.

You don't need to explain yourself anymore.

As I stated earlier, you are doing an excellent job......at delaying any hope for a cure.

Thanx again.

 

[Markku]

And RIGHT THERE is the reason why nobody will take tinnitus seriously.

Why would they?
"There's nothing to be afraid of".
What you are doing is putting yet another nail in the coffin of those, who are desperate for a cure.
Great job.

It's very hard for me to maintain my composure when I read your incessant nonsense. What have you done for the cause? Really, what have you done besides mouthing off and venting here in the threads? You seem to be thinking everyone else is doing the wrong things and hurting the community. You haven't even bothered sharing your tinnitus story for our Tinnitus Week campaign, but I guess it's easier to complain in these threads.

Actually, what you're doing is simply demotivating those who are - and have been - working their assess off to try and make a difference. I hope you're proud of yourself and your accomplishments.

I would also like to remind who you are talking to. @Hazel has done so much for this cause that it makes me angry beyond belief when you shoot down her hard work before you've even seen a chapter.

Simple question to end this, unrelated to the topic but just wanting to demonstrate my point how much effort these things take... Would you EVER have arranged something like this?

https://www.tinnitustalk.com/thread...uestions-for-interview-with-her-mother.32195/

Do you understand how much effort just arranging the interview (consisted of multiple phone calls and e-mails), finding a film crew with minimal budget, spending a day during your Christmas holiday to do an interview, and editing and publishing the footage takes?

Show some respect to those who actually do something.

 

[Wolfears]

It's very hard for me to maintain my composure when I read your incessant nonsense. What have you done for the cause? Really, what have you done besides mouthing off and venting here in the threads? You seem to be thinking everyone else is doing the wrong things and hurting the community. You haven't even bothered sharing your tinnitus story for our Tinnitus Week campaign, but I guess it's easier to complain in these threads.

Actually, what you're doing is simply demotivating those who are - and have been - working their assess off to try and make a difference. I hope you're proud of yourself and your accomplishments.

I would also like to remind who you are talking to. @Hazel has done so much for this cause that it makes me angry beyond belief when you shoot down her hard work before you've even seen a chapter.

Simple question to end this, unrelated to the topic but just wanting to demonstrate my point how much effort these things take... Would you EVER have arranged something like this?

https://www.tinnitustalk.com/threads/the-tinnitus-euthanasia-story-of-gaby-olthuis-—-questions-for-interview-with-her-mother.32195/

Do you understand how much effort just arranging the interview (consisted of multiple phone calls and e-mails), finding a film crew with minimal budget, spending a day during your Christmas holiday to do an interview, and editing and publishing the footage takes?

Show some respect to those who actually do something.

Again.. as your colleague had stated earlier, your aim is to make sure that people are "not afraid of tinnitus".

I'm not sure if I'm in some kind of Twilight Zone here and normal logic no longer applies, but if nobody is afraid, then tinnitus is not really a problem.. or is it?

This is exactly why nobody takes tinnitus seriously.
With this kind of representation, who needs enemies.

Look... I'm pretty sure that lot of effort went into this...
I get that part... but you are working for the wrong fu**ing side!!

 

[Bam]

After what you wrote about your aim being "not wanting to scare people", I want nothing to do with you or your projects.

If your aim is to delay the cure for as long as possible, then you are doing a great job...you don't need any help.
If I didn't know better, I would think you are on Jestraboff's payroll.

I wholeheartedly agree. Wishy washy tinnitus guides are getting us nowhere. We are stuck in the same hole people were in 10,20,30 years ago because the message is diluted down to absolute nothingness. Now if I want people to understand my condition I send them the Wolfears guide because it says it like it is. I'm in hell and If you can't cure me I want to die. It's as simple and horrific as that.

 

[Hazel]

@Markku you are the most wonderful human being, and all these moaners should take their cue from you.

I do wonder how anything we do is delaying the hope for a cure. How about the video we recently published outlining the state of tinnitus research? Did you guys even watch it? How about our plans for Tinnitus Week, you did not offer to help raise awareness on how bad and socially isolating tinnitus can be, did you? How about the interview with the mother of Gaby, who had euthanasia committed because of her tinnitus? How about the Neuromod Q&A for which I spent many hours curating and structuring the questions from this community, @Steve traveled to Dublin for, and @Markku gave up his sleep for the past two nights to edit?

How do any of these things delay a cure?

And again, what have you done?!? We're giving you an opportunity to help out with raising awareness, telling your story in exactly the way you want and we will get it out there. But you won't even take that opportunity. It boggles the mind.

 

[Wolfears]

@Markku you are the most wonderful human being, and all these moaners should take their cue from you.

I do wonder how anything we do is delaying the hope for a cure. How about the video we recently published outlining the state of tinnitus research? Did you guys even watch it? How about our plans for Tinnitus Week, you did not offer to help raise awareness on how bad and socially isolating tinnitus can be, did you? How about the interview with the mother of Gaby, who had euthanasia committed because of her tinnitus? How about the Neuromod Q&A for which I spent many hours curating and structuring the questions from this community, @Steve traveled to Dublin for, and @Markku gave up his sleep for the past two nights to edit?

How do any of these things delay a cure?

And again, what have you done?!? We're giving you an opportunity to help out with raising awareness, telling your story in exactly the way you want and we will get it out there. But you won't even take that opportunity. It boggles the mind.

Again... don't try to convince me about your worthy cause anymore.
I already explained to you above, what the big issue is.

Put it this way...
Just by doing "nothing" (as you put it), I'm already doing more for the tinnitus cause than you people, because at least I'm NOT further undermining it by telling people that there is "nothing to be afraid of".

Of course... everything is ok.
Just bunch of people killing themselves over this time and time again, because there is "nothing to be afraid of"

 

[Elfin]

Wolf, I see your passion, but the irony in what you are saying is that there is a video there of a mother who's daughter did commit suicide due to tinnitus...

It's being represented!

 

[Hazel]

Just by doing "nothing" (as you put it), I'm already doing more for the tinnitus cause than you people, because at least I'm NOT further undermining it by telling people that there is "nothing to be afraid of".

Of course... everything is ok.
Just bunch of people killing themselves over this time and time again, because there is "nothing to be afraid of"

OMG that's not our message at all! You're taking everything out of context.

If that was our message, why would we be interviewing the mother of a woman who had euthanasia committed because she couldn't deal with her tinnitus?

Why would we be soliciting your personal stories of how tinnitus has affected (i.e. ruined) your lives, for Tinnitus Week?

Did you even look at any of our projects? It seems like you're judging all our work without even looking at any of it?

 

[Hazel]

Wolf, I see your passion, but the irony in what you are saying is that there is a video there of a mother who's daughter did commit suicide due to tinnitus...

It's been represented!

Thank you! Indeed, I get the feeling he didn't even check out any of the content I linked to, just presumed it would be bad.

 

[Wolfears]

OMG that's not our message at all! You're taking everything out of context.

If that was our message, why would we be interviewing the mother of a woman who had euthanasia committed because she couldn't deal with her tinnitus?

Why would we be soliciting your personal stories of how tinnitus has affected (i.e. ruined) your lives, for Tinnitus Week?

Did you even look at any of our projects? It seems like you're judging all our work without even looking at any of it?

Did you, or did you not say that your aim is for people not to be afraid of tinnitus?
That one means literally EVERYTHING.

It is a huge deal breaker with me, or anyone who wants tinnitus to be taken seriously.

It's like saying "tinnitus is no big deal, but I want you to check out my videos"...no thanx.

Yes you might have some good material. I do believe that you are being honest here, but you need to realize that you are now sending a mixed, confused message at best.

 

[Hazel]

telling people that there is "nothing to be afraid of".

Did you, or did you not say that your aim is for people not to be afraid of tinnitus?

I want to clarify this further, not so much to @Wolfears because he doesn't want to listen, but any other readers out there who might be interested.

Our message with the Tinnitus Guide project is not "there is nothing to be afraid of", but we're also not telling people explicitly "be very afraid." The truth is in the middle: We explain what the research evidence says and people can make up their own minds. We will include the fact that some people never habituate and might have terrible quality of life, but this certainly doesn't happen to all. And that's simply ... the truth.

 

[Ed209]

The replies here literally blow my mind and I'll never understand the logic behind your thought processes. All I ever see is a criticism of those who are actually doing all the legwork whilst all you armchair critics mouth off about what's wrong with their efforts. If you're not happy, do something about it!

Put it this way...
Just by doing "nothing" (as you put it), I'm already doing more for the tinnitus cause than you people, because at least I'm NOT further undermining it by telling people that there is "nothing to be afraid of".

Yet you are doing this on a platform created by Markku. It didn't just spring up out of the ground. What would you have done if Markku hadn't given you a voice via this very forum? Do you not realise how hard people work behind the scenes? The disrespect is unbelievable.

You always have the answers and yet you never do anything more than post on here where nobody else can see what you have to say. It's so easy to criticise, but incredibly hard to actually effect any change out there in reality.

 

[Jcb]

@Wolfears @Bam seriously lads do you hear yourselves? You are both making huge assumptions before the guide has even been released. I agree wholeheartedly with what you say in regards to tinnitus should never be underplayed, never be seen as a little bit of noise etc but @Markku @Hazel @Steve are working there f*****g arses off on this and all the other projects (on their own time I might add)

What exactly are you both doing to help the cause outside of this forum??

Take action guys, all due respect but talking about how misrepresented we are in the medical community, media etc in this forum is doing jack sh** for awareness.

Pull your fingers out of your arses and start making a change instead of criticising people who are genuinely trying to make a change, working their arses off on their own time.

 

[Hazel]

Yes you might have some good material. I do believe that you are being honest here, but you need to realize that you are now sending a mixed, confused message at best.

It is not a mixed, confused message. The problem is that people's experiences with tinnitus vary widely. We need to cater to many different audiences if you will. The "severe sufferers" are an important groups whose voices we want to represent, but not the only group. Surely, you can understand that?

 

[Jcb]

P.S.
I seemed to have used the words "arse" and "arses" in my little rant apologies to the forum for my abuse of that word.

 

[Wolfears]

Ok you got me... I have no respect for people who downplay tinnitus.

The fact that they worked really, really hard does not interest me.

 

[valeri]

I want to clarify this further, not so much to @Wolfears We explain what the research evidence says and people can make up their own minds.

Don't we already know what "tinnitus research" EVIDENCE says?

 

[Wolfears]

It is not a mixed, confused message. The problem is that people's experiences with tinnitus vary widely. We need to cater to many different audiences if you will. The "severe sufferers" are an important groups whose voices we want to represent, but not the only group. Surely, you can understand that?

Those are the ones who need support the most... those are the ones whose lives are literally in danger.

 

[Wolfears]

@Wolfears @Bam seriously lads do you hear yourselves? You are both making huge assumptions before the guide has even been released. I agree wholeheartedly with what you say in regards to tinnitus should never be underplayed, never be seen as a little bit of noise etc but @Markku @Hazel @Steve are working there f*****g arses off on this and all the other projects (on their own time I might add)

What exactly are you both doing to help the cause outside of this forum??

Take action guys, all due respect but talking about how misrepresented we are in the medical community, media etc in this forum is doing jack sh** for awareness.

Pull your fingers out of your arses and start making a change instead of criticising people who are genuinely trying to make a change, working their arses off on their own time.

I'm not making any assumptions... the lady herself said that the AIM of the project is for people not to be afraid of tinnitus.

Do you know what the word AIM means?

 

[Elfin]

Jesus, we've hit a real low tonight.

(un)civil war...

The point remains unanswered but valid: why moan against the efforts of others whilst not rising up with your own effort?

Be the change you want to see...and all that

#Gandhi

 

[Hazel]

Don't we already know what "tinnitus research" EVIDENCE says?

Yes, there are many studies on how tinnitus affects different people differently, how some people struggle and others don't. The vast majority of people with tinnitus are to some extent habituated (although probably still want a cure). It's not a judgement on those who suffer, just saying that it affects people differently.

 

[Wolfears]

Jesus, we've hit a real low tonight.

(un)civil war...

The point remains unanswered but valid: why moan against the efforts of others whilst not rising up with your own effort?

Be the change you want to see...and all that

#Gandhi

I did... I proposed an actual no nonsense tinnitus scale and trying to raise awareness that way.

What else do you exactly want me to do?

 

[Jcb]

Ok you got me... I have no respect for people who downplay tinnitus.

The fact that they worked really, really hard does not interest me.

Again what are YOU doing outside this forum to help and try and make a difference?

Please explain to me. I know I could be doing so much more.

 

[Hazel]

Those are the ones who need support the most... those are the ones whose lives are literally in danger.

Yes, that's why we're doing the Gaby Olthuis project and getting the info for you guys on potential cures (i.e. the Neuromod Q&A). But there are also others on this forum who are new to tinnitus, have had a relapse, or are in various stages of habituation. They are also scared and need support.

We don't want to discount any experiences, we want to represent your voices, but you're not making it exactly easy for us when you won't take part in any awareness raising efforts.

 

[Wolfears]

Again what are YOU doing outside this forum to help and try and make a difference?

Please explain to me. I know I could be doing so much more.

I will tell you what I'm doing outside this forum.
I'm NOT undermining the tinnitus cause of those who suffer.
By doing that I'm already doing more than those who do.
So get off your high horse.

 

[Elfin]

I did... I proposed an actual no nonsense tinnitus scale and trying to raise awareness that way.

What else do you exactly want me to d

Ok, good. Now what's the next step for getting this out there into the wider public domain?

 

[Jcb]

I will tell you what I'm doing outside this forum.
I'm NOT undermining the tinnitus cause of those who suffer.
By doing that I'm already doing more than those who do.
So get off your high horse.

So that translates to you are doing f**k all.... cool story bro
I'm not on a high horse, if anybody is trying to make waves on their "high horse" that's you buddy.
Actions speak louder than words.

 

[Wolfears]

Yes, that's why we're doing the Gaby Olthuis project and getting the info for you guys on potential cures (i.e. the Neuromod Q&A). But there are also others on this forum who are new to tinnitus, have had a relapse, or are in various stages of habituation. They are also scared and need support.

We don't want to discount any experiences, we want to represent your voices, but you're not making it exactly easy for us when you won't take part in any awareness raising efforts.

Ok, good. Now what's the next step for getting this out there into the wider public domain?

I was hoping to plant some kind of a seed and maybe people from here to send it to their friends, whom would maybe send it to theirs.

It would be a good start... social media has lot of power...if enough people share it, who knows.

 

[Ed209]

I will tell you what I'm doing outside this forum.
I'm NOT undermining the tinnitus cause of those who suffer.
By doing that I'm already doing more than those who do.
So get off your high horse.

So you're doing nothing then. The tinnitus community is so apathetic it defies belief, and the most effort I see from the naysayers is when they attack the ones who are doing all the work.