how is the priority for tinnitus research established
By forming a consensus: That tinnitus is a progressive and in its severest form,
deadly condition; no different from
FFI (except in its prevalence).
or the priority among all competing medical conditions?
It doesn't have to compete with other medical conditions. That's all in your head.
It only has to take priority over:
and
Is this forum actually a significant source of information for research grant requests or decisions? If the answer is yes, then how do research scientists extract useful information from the 500,000 posts here?
You're confusing the issue. No one said anything about scientific researchers visiting the forum to extract data.
(Although, if
me and
@Toby1972 can
do it, there's no reason why they wouldn't be able if they wanted to.)
What Tinnitus Talk is, is the growing foundation and forming bedrock of our community. It may not have reached all who suffer with our affliction (
yet), but it is the biggest and best representative of us and our affliction that has ever existed, and thus
the narrative that pervades it is highly influential in how our condition is perceived by a huge number of people (on at least two continents), be they: member, researcher, sufferer, philanthropist, politician, reporter, medical expert or common man in the street.
A tinnitus sufferer alone can be persuaded to believe their disablement by a noise in their head is irrational. A tinnitus sufferer united with his or her fellow sufferers can steadfastly assert that their disablement is perfectly natural, in the same way a sufferer of paralysis can.
This is the power of the collective. And it can work both ways (both in and against our favour; dependent on what we vote to project). Not just through our words on the forum, but how we deem to rationalise our circumstances after visiting the forum, and choose to advertise them in the real world as a result.
Likewise, future prospective researchers, students and everyday people, who might want to learn more about tinnitus. They find our group. If 7 in every 10 posts says tinnitus is a highly volatile, often lethal condition; they come away from their 20 minute research understanding that.
Alternatively, if 7 in every 10 posts say tinnitus is only lethal for 0.0035% of sufferers (stats you published), they come away with that impression burned into their minds forever and conclude that tinnitus is not a condition worth trying to solve anytime soon.
▲
This could persuade people who might otherwise have gone on to do brilliant research in the field of tinnitus, that it's not even worth it.
The top actionable strategy cannot possibly be to suppress habituation threads on Tinnitus Talk.
It's not, and I've never proposed such a thing. I have in fact,
actively shared on my own experience of habituation, on many occasions.
Why would I knock it?
It's the thin string keeping me alive until the day an actual treatment emerges, and I cling to it in the hope that it doesn't break before then.
There are corporations, government agencies, universities, private donors, lobbyists, untold politics and influence peddling, ROI calculations, risk assessments, etc. I have not seen a single post or questions from any of these entities in the time that I have been here.
That's crazy, because I saw
Doris Buffett knocking around on
r/neuropathy all the time before she did this ▼
Philanthropist offers $450,000 challenge for Hannah's Hope fund (timesunion.com)
How do you suggest that Tinnitus Talk be able to help people with the available techniques to get better where it is possible and still be able to keep those who allocate research dollars sensitive to the needs of the rest?
Why do you equate not underplaying the seismic impact this condition has on all who experience it, with declining to offer help and advice to newcomers? Is a better question.
It has to be both, suspending all help on the assumption of a faster cure is not an acceptable way to handle any medical condition. Extending suffering of the 98% here for a faster cure for the 2% club is not a good plan.
This is a strawman George, and proves you do not do your homework before challenging a person and their position.
Much like the first time we spoke and you assumed I was suicidal because I was posting in the Suicidal thread. You have dedicated little or no time to learning anything about me.
Just a brief sweep through my post history shows that I routinely help newcomers and veterans alike. I advise on supplements and behaviour that will reduce spikes and often reassure them that they will stabilise.
Believe it or not, you can do all this without minimising the condition.
Not everybody who comes here, seeks help, gets it and reports improvement is a liar as you suggest.
Another strawman (or inability to read).
Never claimed improvement was a lie.
What I said was: people who claim to have severe/catastrophic tinnitus and are unaffected by it, are liars.
But you're right in that I may be wrong to tar all people like
@Mattv with the same brush. Some of them are just downright delusional.
I know that you are frustrated but tuning out those more fortunate than you and damaging others chances at a similar outcome is not going to balance the scales for those of us who have drawn a shitty hand in the medical condition poker game.
"damaging" other peoples chances? By?
- Letting them know how serious this illness is?
- Making it clear that not preventing further damage as a priority will lead to an existence no nightmare could do justice?
- Broadcasting to non-sufferers that tinnitus is not something you ever want to live with or get in the first place?
- Challenging the gaslighters, psychotherapy shills and belittlers, so that we can all have a working treatment more quickly?
If all that is "damaging", then by all means, consider me
Perses.
Also, please do not compare yourself to me, patronise me, or presume to understand my motives. For starters you clearly know nothing about me or my life (despite the ease of which you could learn about it), demonstrated time and again by our few interactions.
You preach acceptance of an illness you developed in your 60s (the twilight years of your life) and have terminal cancer.
This makes it far easier to say "ho-hum, tinnitus aint so bad, guess we could be waiting on that cure for a while". You've mentioned you had a good career as an engineer. You also frequently raise the loss of your wife and friends as an equivalent for the suffering people on this forum are going through, but never show gratitude for the fact that at least you had a wife, a career and friends.
The thousands of newcomers developing tinnitus are now getting younger and younger (just like myself). Cut down in their prime,
they will likely never get to have that experience of being in a happy marriage with a good career and meaningful friendships (or hold down any relationship or job at all, for that matter). This makes acceptance far less easy, and dismissal far more insulting.
No George, you are nothing like me. We share a condition, but the toll it has had, and will continue to take, on our lives, couldn't be more different. That's not perspective, that's reality.
You seek to harm 98% of those who come here for help every month to try to get help for the 2%. Why is that?
And this is it, right here.
You frequently push this narrative of the
2% club, which you've formerly referred to as the
0.1% and
1% club (when did it increase? and how many more times do you think it will?), a figure you've pulled from your @*/% and self-confirmed is the official tally for those of us here being killed by the disease, and those of us not yet on that slippery slope.
You also seem to think Tinnitus Talk's demographic is representative of the universal number of people for whom tinnitus is a big problem, throughout the world, while never bothering to take into account the fact that:
- there are sufferers that don't have an adequate grasp of English
- there are sufferers that aren't computer literate
- there are sufferers that don't have access to the internet
Additionally your use of the figures for deflating numbers attributed to problematic cases, also ignores the fact that:
Funny thing. Tinnitus is the number one military service related disability. And yet, how many ex-servicemen have you spoken to or even seen on Tinnitus Talk?
No George, it's you who is doing the harm, with your psychobabble, bullshit statistics,
insulting threads and ultimate diminishing of an illness that has wrecked countless lives, and will continue to wreck even more, if the current staus quo is maintained.
I seriously suggest you start figuring out another way to "help".
). That being said, I'd feel far luckier if I didn't have severe tinnitus.
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