Why Is There Such a Stigma About Cognitive Behavioural Therapy?

Why does it seem like there is a great chasm between the tinnitus research world and the biomedical companies that are actually demonstrating the ability to heal the anatomical structures implicated in the pathogenesis of tinnitus? The tinnitus research community is adamant that they are trying to find a cure but then they aren't following the lead of people like Audion, Hough Ear, Frequency Therapeutics etc, or even really talking about them much if not at all.

Does "trying to find a cure" mean "sitting around and waiting for someone else to do it"?
 
10 dB SL is not the maximum, but anything above 20 dB SL is incredibly rare and almost unheard of. The highest I've personally seen reported is 30 dB SL. However, these numbers don't carry much weight, anyway, in the grand scheme of things.

From my experience, audiologists need far better training when it comes to tinnitus and how they talk to patients regarding it. This is completely anecdotal of course and I know there are some great ones out there, but of the many I have spoken to, they just weren't very knowledgeable.

Obviously, I wasn't there when the audiologist was talking to you, Tybs, so I don't know all the facts of what was said, but they should have explained that measuring tinnitus objectively is just not something we can currently do. At best we can estimate using the sensation level whilst doing a pitch and loudness match, but this cannot be compared to other decibel scale weightings. If this wasn't explained then I can understand why so many people are insulted when such a seemingly low number is given out. The reason for this is that most people try to compare their tinnitus to outside sounds using the A or C weighted decibel scales, and this will come to a much larger (and meaningless) number. I've spoken about this a number of times so I'll paste my previous message on this issue for further clarification to anyone who's interested:

There's no such thing as 70 dB tinnitus. You have to realise that there are many different weightings of the decibel scale and none of them really convert into something that can accurately measure how loud one's tinnitus is. There is the A-weighted scale which is aligned to the strongest frequencies within the human hearing range which is most notably 500 Hz to 8 kHz. Then there is the C weighted scale which takes in more of the lower and higher frequencies of a broadband sound. The Z rated scale is flat and measures all frequencies evenly.

The closest thing we have to measuring tinnitus is what's called a pitch and loudness match.

In audiology, you will see terms such as sensation level (SL) and hearing level (HL). Remember that the decibel scale is all relative to the quietest sound that can be heard, so when one has an audiogram and their hearing threshold shows 0 dB HL, this means they can hear the quietest sound that an average human ear can detect (assuming one has normal hearing and one is relatively young). This is where the HL standard is derived. Sensation level, on the other hand, is the measure of the intensity of an auditory stimulus above one's threshold at a given frequency. During a loudness match, the audiologist will find out at which frequency a person hears their tinnitus - if it's tonal - and then they will measure the distance between the loudness of that persons tinnitus and the threshold of their hearing. So for example, if a person hears tinnitus at 6 kHz at 40 dB and their hearing threshold at 6 kHz is 30 dB HL, then that person would have a tinnitus match of 10 dB SL.

One of the problems with this method is how accurately people can match their tinnitus to a frequency as there is often an octave error in one's judgement. This is especially true of people who have no musical training. The other issue with this is that it doesn't account for the brain's emotional processing of the sound which is the domain of Psychoacoustics. All sounds are not processed equally, and the volume we "hear" something at is the result of a complex chain of events within the brain. The more threatening a sound is perceived to be (which is based on our life's experiences) the louder it will be portrayed in our conscious awareness. You also have to factor in tiredness, adrenaline and other hormones, and many other factors. A great example of this is how a movie at the cinema is perceived as loud, but if someone so much as whispers, it can be annoying because it can be heard. The whisper that's heard in comparison to the volume of the movie is considerably quieter and yet people still hear it and get annoyed by it. Another example is how we can have our car stereo set at a comfortable level, only to find that it's LOUD the following morning when we are tired, even though nothing has changed. We often have our TV's on quietly at night, so as not to wake others up, and yet our brain can easily normalise this level of sound to be perceived as being louder. You discover this when you come to watch the following day and it's WAAY too quiet, so you turn it back up again.

What I'm saying is that our perception of sound is malleable and can change depending on the conditions we are hearing something in. A 20 dB creak in the middle of the night can potentially sound deafening if you are home alone.

From a Psychoacoustics point-of-view, two sounds that are the same on a decibel meter will not necessarily be perceived as being the same loudness, and for this reason, a new unit called the phon was created. A phon is equal to a decibel at 1 kHz, so 40 phons would be the same as 40 dB at 1 kHz. A 90dB sound at 150 Hz, for example, would not be perceived to be as loud as a sound that is 90 dB at 3kHz, so by using phons we can try and keep one's perception as neutral as possible. Sones are a linear representation of phons; 1 sone is equal to 40 phons and every 10 phons thereafter would represent a doubling in perceived loudness. This means that 50 phons would be equal to 2 sones and 60 phons would be equal to 4 sones, etc. Psychoacoustics is the science of how our brain interprets sound, and it's interesting to note that phons and sones are the primary units of measurement. This is because it's particularly difficult to define how loudness is perceived from one individual to another and these are likely the most neutral measurements we currently have.

This is already a long post, so I'll conclude by saying that most people's tinnitus is around 10 dB SL when using the pitch matching method. It's extremely rare to see anyone go above 20 dB SL.
Ed this is a very well written and informative post. I wish you would join us. Darth Vader turned from the Dark Side, so can you. Look deep inside yourself and find your true autism, the autism of your childhood.
 
Imagine getting MS and your doctor refers you to a psychologist for treatment? I am sure they do if you have anxiety about your new diagnosis but no respectable neurologist pretends like this is a treatment for the actual disease. No one pretends positive thinking is a treatment.

Why does this happen with tinnitus? Because until recently there were no treatments in the chronic stage and doctors don't like to tell people they don't have anything for them. I think this will change as more treatments (e.g.. Bimodal stimulation, regenerative medicine) becomes available but there are always doctors who will resist change because it's more work for them and they have to go off autopilot and are often already crunched for time.

I'm going to make this my very last post on this thread because as Fishbone stated, we're going round in circles.

What I can gather, and I've said this before, is that everyone's frustration is centred around external factors such as the European guidelines and the lack of funding for research. These are separate issues that have somehow become intertwined with CBT in recent times. From a straight-up medical perspective, clinicians know there is no cure or treatment that can objectively lower the volume of one's tinnitus. Nothing can be done! So what we are left with is looking at ways to learn how to live with it for today. For some, CBT may help, and for others, it will be a complete waste of time. It doesn't have to cost much, or even anything, as these techniques have been around since the '60s, so there are various books and internet apps around. There may be some rogue CBT practitioners out there, but the fault lies with them and not the method itself.

I agree that the European guidelines need re-doing as they aren't clear at all. I can see people doing themselves further damage based on how some of it is worded. It's not good.

As far as funding research goes, all incurable conditions are in the same boat fighting for the same money. What we need is more activism and awareness-raising from the tinnitus community itself so that governments and large institutions can hear our voice loud and clear. This is where things fall considerably short.

CBT is just a way of coping, nothing more, nothing less. It's just an option to try, but it seems to have become the primary scapegoat for everyone's frustrations. The only way to effect meaningful change is to become active and vocal away from this forum.
 
I'm going to make this my very last post on this thread because as Fishbone stated, we're going round in circles.

What I can gather, and I've said this before, is that everyone's frustration is centred around external factors such as the European guidelines and the lack of funding for research. These are separate issues that have somehow become intertwined with CBT in recent times. From a straight-up medical perspective, clinicians know there is no cure or treatment that can objectively lower the volume of one's tinnitus. Nothing can be done! So what we are left with is looking at ways to learn how to live with it for today. For some, CBT may help, and for others, it will be a complete waste of time. It doesn't have to cost much, or even anything, as these techniques have been around since the '60s, so there are various books and internet apps around. There may be some rogue CBT practitioners out there, but the fault lies with them and not the method itself.

I agree that the European guidelines need re-doing as they aren't clear at all. I can see people doing themselves further damage based on how some of it is worded. It's not good.

As far as funding research goes, all incurable conditions are in the same boat fighting for the same money. What we need is more activism and awareness-raising from the tinnitus community itself so that governments and large institutions can hear our voice loud and clear. This is where things fall considerably short.

CBT is just a way of coping, nothing more, nothing less. It's just an option to try, but it seems to have become the primary scapegoat for everyone's frustrations. The only way to effect meaningful change is to become active and vocal away from this forum.

Appreciated, this seems like a fair conclusion to the topic at hand. As individuals we can always disagree on details, but I can quite find myself and my views in your post.

May I add that I consider this topic as a very valuable source of insight? The discussions have been very informative, and I thank you all for sharing your input. It's been a good read, and I'm glad I found this forum for the required support on the intellectual front :D
 
everyone's frustration is centred around external factors such as the European guidelines and the lack of funding for research
I think I've made it pretty clear that I have issues with CBT for tinnitus directly.
There may be some rogue CBT practitioners out there, but the fault lies with them and not the method itself.
We'll have to disagree on that one, I don't see how it's just some (talking about therapists offering CBT or mindfulness for tinnitus specifically). Also, like many others on here have said, our main issue is usually how CBT for tinnitus is being promoted and which misconceptions it oftentimes spreads, not CBT itself.
The only way to effect meaningful change is to become active and vocal away from this forum.
Completely agree.
 
not CBT itself.

See, there is some common ground after all. I'm talking about CBT itself as a method. How some practitioners promote themselves is out of our hands and I see that as a separate issue that needs addressing.

I'm looking at this completely from the perspective of that it's something that may help people cope today. New sufferers who arrive here are unlikely to try it based on the stigma it has, which is unfortunate as it could help a certain percentage of them and this is a support forum after all.

Pioneering for change regarding the various points you've brought up is another issue in my eyes. I'm pro-cure/treatment and always have been and have done whatever I can to do my bit, but I'm also a realist and know there are people who need ways of coping now whilst we wait for the possibility of treatments.

I prefer to see people supported on here whilst advocating for change away from here. One of the problems I see is that many mix the two up, so you have people essentially preaching to the choir here, but nowhere else, and I think this affects how people are supported.
 
Not too long ago, I had seen 2 guys in black hoodies and back-packs walking down my street.
While there are no studies (that I'm aware off) to suggest, that people dressed in black hoodies carrying back-packs are more likely to be up to no good, my gut feeling (or maybe call it my street smarts) told me otherwise.

Again, I had absolutely no evidence which would suggest to me, that those two individuals would be up to something, yet I somehow knew that they were.

Later on that day a neighbour 3 houses down caught them trying to break into his garage.

As someone who routinely wears black hoodies while carrying a backpack, sometimes in bad parts of town depending on what I am doing, and works in an industry where "black hoody and packpack" is practically the dress code for a large swath of 6-digit earners, the idea that we're up to no good just tells me you're stereotyping people. Okay, these people happened to rob someone, that doesn't prove anything about people in general wearing black hoodies and backpacks. The rest of your post sounds like confirmation bias.

We had a thing here where someone was concerned about "suspicious people" ringing their doorbell at 3am, and responded by sticking a gun in their face -- it turned out that they were non-white tourists who had gotten lost trying to find their Airbnb in a no-cell-coverage zone, and the gun-toting idiots were more or less shamed into silence.
Not everything in life has to be researched and evidence based.
Sometimes we need to put 2 and 2 together ourselves
Of course we all make decisions based on our gut feelings all the time, and this is a necessary survival skill. But, I think when we're looking for "truth" in terms of datasets, statistical analysis, and trying to make mid-to-long-term decisions, if we just put 2 and 2 together ourselves we are as likely to get 3, or 5.

All that said, this has indeed been a long thread, and while I may not agree with you, or with @JohnAdams or a number of others about some things, one thing is very clear to me:

I think everyone else posting in this thread sincerely wants the best for all tinnitus patients and wants to see the fastest path to less suffering for all of us, even if we don't agree how to get there. The vitriol that sometimes flies from my fingers is borne of passion and concern, and I believe that's likely true for most of us.

So, I guess we should be working towards unity. Yesterday, John tried to make a point along those exact lines, which I ignored for the moment, but which has come back to me, and I think is a prescient message going into the new years. Whatever our disagreements with each other, whatever our political or social or cultural backgrounds, we all have this one really shitty thing in common. So, as I take the next month off from social media to try to catch up on the last 12 months of video games and books, I will also try to reflect on that and how I can better learn to shut my yap sometimes when I'm just contributing to cyclical disagreement.

I hope that everyone has a blessed and quiet NYE, with your family/friends if you so desire.
 
Perhaps you will forget about your tinnitus as well :LOL::D;)
I already feel sorta like I'm living the life of the dude from Memento, so anything is possible

Except my secret notes to myself say "your cellphone is in the kitchen on the table" and "don't forget to feed the child and the animals and yourself"
 
I think everyone else posting in this thread sincerely wants the best for all tinnitus patients and wants to see the fastest path to less suffering for all of us, even if we don't agree how to get there.
We think the best path is increased attention given to biomedical advancements that are repairing damage to the cochlea. There is no fast.

Your words echo the slogan of the BTA, "a world where no one SUFFERS from tinnitus" not "a world where no one has tinnitus".
 
Your words echo the slogan of the BTA, "a world where no one SUFFERS from tinnitus" not "a world where no one has tinnitus".

Nah, not at all, I didn't say "no one" anywhere and I'm all for a cure. I spent 10-15K to be a lab rat at UMich, dude, I want to see real cures as much as anyone else.

It makes sense to me to suffer as little as possible in the meantime and use whatever tools are available, but that's just my opinion, and maybe we disagree about what those tools are.

I do, sincerely, wish you a happy new year and continuing improvement. I mean that for real and not in the Michael Leigh backhanded insult way.
 
See, there is some common ground after all.
This was my first post on page 1 :D:
Most people on here are not against CBT in itself but how it's being advertised and what it's promising.
I'm looking at this completely from the perspective of that it's something that may help people cope today. New sufferers who arrive here are unlikely to try it based on the stigma it has, which is unfortunate as it could help a certain percentage of them and this is a support forum after all.
Yeah, I have an issue with that as well. For example, sometimes people talk about wanting to try out CBT and another user will say "it's a scam" without further explaining why they're coming to that conclusion. Those are unnecessary comments that we don't need here. However, I think most CBT for tinnitus therapists will spread certain misconceptions and I'm left wondering: How much of an effect does this have on how tinnitus is seen in general? How likely are people to engage in activism if they're being told that they should avoid all things tinnitus as much as possible since this would lead to increased awareness?
 
Why did you have to spend so much? Travel?
Yes, travel and lodging; they had to see me every week, and the cheapest way to do that was to fly in on a Thurs, Airbnb until the next Tues, then fly home. That would give me 8 days at home or so, then repeat.

I am not the most budget conscious person in the world so I bet someone more willing to take red-eyes and sit in loud seats rear of the wing might have been able to save some money, but it woulda been some thousands any way you slice it.

My motivations were certainly partially selfish interest, but I did really also want to see the science on the ground and contribute in any way I could. Because I was (apparently, they told me after unblinding the data) one of the best responders both in terms of subjective and objective improvement, they asked me about participating in a Phase-II early on, but by that time I was living further from an airport and had a child to care for I did not want to be away from for such long stretches.

If they had been able to use UMass Amherst as a secondary study site, I would likely have been willing to make the commute for that, it would have meant ~8 hrs on the road a day once a week. Unfortunately, that did not happen.

I was the only travel patient in Phase-I and part of me wonders if the logistics with that were one of the reasons they decided they didn't want people doing that in the current trial. If so... sorry, would-be travelers :-/
 
Yes, travel and lodging; they had to see me every week, and the cheapest way to do that was to fly in on a Thurs, Airbnb until the next Tues, then fly home. That would give me 8 days at home or so, then repeat.

I am not the most budget conscious person in the world so I bet someone more willing to take red-eyes and sit in loud seats rear of the wing might have been able to save some money, but it woulda been some thousands any way you slice it.

My motivations were certainly partially selfish interest, but I did really also want to see the science on the ground and contribute in any way I could. Because I was (apparently, they told me after unblinding the data) one of the best responders both in terms of subjective and objective improvement, they asked me about participating in a Phase-II early on, but by that time I was living further from an airport and had a child to care for I did not want to be away from for such long stretches.

If they had been able to use UMass Amherst as a secondary study site, I would likely have been willing to make the commute for that, it would have meant ~8 hrs on the road a day once a week. Unfortunately, that did not happen.

I was the only travel patient in Phase-I and part of me wonders if the logistics with that were one of the reasons they decided they didn't want people doing that in the current trial. If so... sorry, would-be travelers :-/
Did it help your tinnitus?
 
I was trying to get with this gal and I knew she loved music. So I bought a guitar (acoustic) and was trying to learn some sweet classic jams, I gave it a try and wanted to play the guitar badly, but it was not helping me at all. My tinnitus was annoyed badly. So I stopped playing the guitar.

Then I tried to learn how to sing, and actually sang to her a few times, I could not keep a straight face (I was laughing hard and she was turned off :LOL:) because I knew I was beyond horrible at singing as well. So, I decided to not try anymore and I feel a lot better :)

Love makes us do some odd things...
Yeah I cant sing worth a dammed either:eek::D I actually dreamed I was habituated. The I woke up with noise :bag:;):D I pick up my Les Paul today.(y)
 
I was the only travel patient in Phase-I and part of me wonders if the logistics with that were one of the reasons they decided they didn't want people doing that in the current trial. If so... sorry, would-be travelers :-/
Question for you on this topic - the Lenire folks are saying that their devices sound like bleeps and tones and sad science music. Did the UM device use a similar approach? I ask because there's a lot of talk about the placement of electrodes and somatic enablement, but not as much discussion about the actual sound component.
 
Did it help your tinnitus?
Yes; I believe I finished the second treatment set sometime in the late spring of 2014, so if you look at the UMich thread from that period of time, you should find some posts about what I had to say right afterwards. However, I will spare you the trouble:

Post with link to actual published results

My short term take: the device was at least as effective as benzos at making me not think about tinnitus, and based on the published data probably actually reduced the volume and nature of my tinnitus. Here are some quotes from me in the following pages:

It took two weeks to notice anything and then the effect seemed pretty consistent. However, it certainly may be that using the device for longer, or for a couple periods a day, might have a different effect -- that's stuff they'll have to figure out.

I didn't really feel the volume changed, though, my data from the objective T match might say otherwise. But it was more like the quality of the sound changed and the sort of "signal strength" -- meaning, it became more background than foreground, more gentle hiss than piercing whine.

Post where someone dug up my Reddit writeup without realizing it was mine

14khz CRT-monitor whine, predominantly on my left side, where I also (shockingly, I know) have a dip in my hearing thresholds around 14khz. Other tones and sounds, too, but that one is the only one that consciously bothers me.

They were able to tell me that some people responded to both the experimental protocol as well as the sham protocol, some people did not respond to either, and some people responded to the real treatment but not the sham treatment. Further, no one responded to the sham treatment and not to the real treatment. Therefore, since I responded to one and not the other, I responded to the experimental protocol.

My tinnitus did not disappear, but my ratings for volume decreased moderately, and my ratings for distress plummeted as a result. The effect wore off after a couple days of not using the device.

I have had other periods where my T has been less significant, unrelated to any treatment -- but the 2-3 weeks that it seemed to be working, it did so much more consistently, and in some cases dramatically, than it does in general.

Worth noting that I spent some amount of time and money traveling regularly from DC to MI to participate, so I have a bias in that I want to believe this is a real thing. The animal data is pretty compelling to me, though.

That last bolded section is why RCTs are important and illustrates why I don't think my experience means too much to anyone else. Of course, it biased the hell out of me, and the preliminary paper looks good.

Time will tell.
 
Whether we like or dislike CBT, TRT or any other method, one thing is clear all of us want the best for each other and all of us are in this together daily. We are going through a horrible ordeal and all of us are united in our cause to live a better life. @Ed209, @billie48, @Michael Leigh, @Jazzer, @linearb, @Lane, @Greg Sacramento and many more and myself wish you a great new year.

This is one of those forums that truly cares about the people on it and I try help all those that suffer on this site. Please protect your ears tonight and be good to yourself! Life with tinnitus is a challenge. we are working hard together to pull though it.

This forum unites all of us. So do know that you are never alone.That you will always have someone, that cares for you and WILL understand what you are going through :)

Bless all of you!

PS - A huge thank you also goes to the people behind the scenes @Markku, @Hazel.
 
Whether we like or dislike CBT, TRT or any other method, one thing is clear all of us want the best for each other and all of us are in this together daily. We are going through a horrible ordeal and all of us are united in our cause to live a better life. @Ed209, @billie48, @Michael Leigh, @Jazzer, @linearb, @Lane, @Greg Sacramento and many more and myself wish you a great new year.

This is one of those forums that truly cares about the people on it and I try help all those that suffer on this site. Please protect your ears tonight and be good to yourself! Life with tinnitus is a challenge. we are working hard together to pull though it.

This forum unites all of us. So do know that you are never alone.That you will always have someone, that cares for you and WILL understand what you are going through :)

Bless all of you!

PS - A huge thank you also goes to the people behind the scenes @Markku, @Hazel.
Why does any of that preclude us organizing and becoming activists towards drugs that could help us? The HIV community did it and it served them well. Why would tinnitus be any different?
 
Question for you on this topic - the Lenire folks are saying that their devices sound like bleeps and tones and sad science music. Did the UM device use a similar approach? I ask because there's a lot of talk about the placement of electrodes and somatic enablement, but not as much discussion about the actual sound component.
The UMich device just used a series of broadband (square wave?) tones. They did test my hearing and there was maybe some thought that it was important to have SOME hearing left in the tinnitus ranges. But that's not really known at this time.

It was just beeps, and I was told that they did not need to be loud at all, so long as I could clearly hear them. I had them turn the volume down after the first attempt at calibration to something I was comfortable with even in my insane, heightened state of distress and borderline hyperacusis. (I do not, and have never severely, had hyperacusis -- but when my tinnitus has been at its absolute worst combined with severe anxiety, I have found ordinary sounds intolerable).
 
Why does any of that preclude us organizing and becoming activists towards drugs that could help us? The HIV community did it and it served them well. Why would tinnitus be any different?
It does not, in any way shape or form, and I would 100% support such activity. My time is more limited than my wallet these days, and GoFundMe is a thing. Put together a convincing use of money with clear transparency showing that 100% goes to advocacy and exactly how that's happening and I will be glad to contribute. (I'm not kidding; I got my shiny Benefactor thing here after I inadvertently said something sassy to an admin which I felt so bad about that I was immediately compelled to drop $100).

My wife claims she wants to run our finances in 2020 though so work fast! Something about "I'm not sure we actually needed the motorcycle, three computers and thousands of dollars in chemistry equipment you bought last year", weird.
 
The UMich device just used a series of broadband (square wave?) tones. They did test my hearing and there was maybe some thought that it was important to have SOME hearing left in the tinnitus ranges. But that's not really known at this time.

It was just beeps, and I was told that they did not need to be loud at all, so long as I could clearly hear them. I had them turn the volume down after the first attempt at calibration to something I was comfortable with even in my insane, heightened state of distress and borderline hyperacusis. (I do not, and have never severely, had hyperacusis -- but when my tinnitus has been at its absolute worst combined with severe anxiety, I have found ordinary sounds intolerable).

Thanks for sharing - I appreciate the detail on the sound component as we are all a bit sensitive to sounds and volumes.

Re: your success - you ran only a 4 week protocol as well as I understand it, so perhaps with more time on the device your results could have improved even further, and some non-responders or lower responders on a longer protocol would have seen more results as well. All very intriguing.

Thanks for the detail in your other post on this thread regarding responders / non-responders. It helps manage the expectations of the community.

Much appreciated!
 
Glad to see we are on the same page. What is more disheartening is one of my health authorities in Lower Mainland BC Canada charged me $100.00 claiming it was some kind of TRT.

It just turned into an info session of mostly what I had found online and YouTube. And links to snake oilists that charged an arm and a leg for TRT and CBT practitioners.

I had reached out to one that was out of province (state for US folks). She was having a weekend session. With the cost airfare and hotels I was looking at over $2000.00.

Then I found the local option I previously mentioned, same with TRT. With all I tried I spent approx $4,000.00, luckily a good portion was covered under my health care plan.

Happy new year everyone.(y):D
 
It does not, in any way shape or form, and I would 100% support such activity. My time is more limited than my wallet these days, and GoFundMe is a thing. Put together a convincing use of money with clear transparency showing that 100% goes to advocacy and exactly how that's happening and I will be glad to contribute. (I'm not kidding; I got my shiny Benefactor thing here after I inadvertently said something sassy to an admin which I felt so bad about that I was immediately compelled to drop $100).

My wife claims she wants to run our finances in 2020 though so work fast! Something about "I'm not sure we actually needed the motorcycle, three computers and thousands of dollars in chemistry equipment you bought last year", weird.
Completely agree. We have been saying this for years now: Talking/arguing/complaining/meming on this forum does NOT equate to activism or indeed change anything in the real world. That's why Tinnitus Hub also does its own research work and we've recently started looking into whether we can pull off some well-organised political lobbying. But we need more people willing to put in their time, effort or money to pull off such projects. Or of course start your own campaign, if you're so inclined, we're happy to support any way we can!

So yes, we'd like to see @JohnAdams - and others on this site who are passionate about finding a cure - taking the initiative; and by that I mean don't just talk about "we should be doing xxx" but actually do it! It's a lot easier for others to follow you in the right direction if you show them what that looks like first; merely describing it is too abstract.

And for what it's worth, @Ed209 is and always has been pro-cure, as anyone making an effort to listen to him would know. So claiming he's on the "dark side" is just false. Unlike many others here who decry the status quo, Ed has put his money and time where his mouth is, among other things raising over 5.000 pounds for curative research through the Danny Boy fund.

Personally, I think this whole argument over CBT is a waste of time, because the vast majority of us agree that while CBT can be helpful with coping it's not a cure. We're arguing over nuances here, instead of keeping our eyes on the prize.
 
So yes, we'd like to see @JohnAdams - and others on this site who are passionate about finding a cure - taking the initiative; and by that I mean don't just talk about "we should be doing xxx" but actually do it!
I'm on Twitter, mostly calling out bad advice. I've put my neck out there to try experimental surgical procedures and I am also now in the process of working with a researcher to analyze my blood to understand why I have near silent days and bad spike days. We need volume when it comes to voices. We need to all be on Twitter, researching, working with researchers as much as we can. What we don't need are people in this community fighting tooth and nail to keep us mired in the status quo. There's not much else I really can do. I don't have connections like you and Markku do.

The best thing we can do is usurp the leading voices in the tinnitus research field by pointing out their bad research and force them to join us in daily getting the message out that there are medicines out there that are probably going to treat us, like the Hough Ear pill, and that we need this now.
 
There's not much else I really can do. I don't have connections like you and Markku do.

With all due respect, but yes you can. Or any of you, for that matter. @linearb gave you an excellent idea above. While @Markku and I may have connections, we're only volunteers and our time is extremely limited, so we need others to kickstart projects for us, which we can then help push forward.

Anyway, I'm not just singling you out here, but Twittering doesn't make much difference unless you have a lot of followers.
 
With all due respect, but yes you can. Or any of you, for that matter. @linearb gave you an excellent idea above. While @Markku and I may have connections, we're only volunteers and our time is extremely limited, so we need others to kickstart projects for us, which we can then help push forward.

Anyway, I'm not just singling you out here, but Twittering doesn't make much difference unless you have a lot of followers.
You need to go to the TRI and place whoopie cushion under Berthold Langguth when he sits down. The sound produced would be a step up from some his other publications.
 
I'd give anything to have a near silent minute, you are so blessed @JohnAdams
It's the same with mine. It fluctuates. Strange thing is when it's near silent I can still feel quite an annoying reaction all the same. Other times it's like Dr. Hubbard states in his videos it can feel like you are beating it one day following by getting your head ripped off and/or really intrusive the next. Today is a "better" day. I just got back from a workout and it has not altered it much. Spikes a bit during being at the gym but then settles back down.

If I am having a spazz day then it just remains as such. OT My Les Paul is pretty sweet!
 

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