"That Buzzing That Never Goes Away" — Article in The Times

[kelpiemsp]

Research can be wrong. You cannot blindly accept publications by all publishers. To do so is to naively ignore the very real existence of scientific bias.

I expected more of an argument, or something. You should put that disclaimer around everything that is said here.

 

[Steve]

Cue the hysteria from people telling everyone else what the true interpretation is.

If people have issues with research or what they see as the representation of tinnitus then simply moaning about it is not going to change anything. If you want to see change then why not be constructive and make suggestions? Do something about it.

Speaking as probably the only person here that has been approached by a paper and seen words taken out of context, and who has met and talked to Will and Lawrence. Let me share my thoughts:

Newspapers are not gospel. They ask a few questions, look for some old quotes and make their own context. This is not a direct interview so nobody can see the context and where the answers may have come from. If you read it properly it is clearly a series of cuttings that have been thrown together to get a story out. Do you for one second think that approval was asked from any of those quoted before it was printed? If you read it properly does it really say what you think it says?

Will Sedley certainly does not believe that people can just tune it out. He gave himself tinnitus by manipulating his jaw to see what noises he could create, he said that he would never claim to truly have tinnitus because what he has is mild and barely noticeable. In my chats with him he fully appreciates the differing levels of experience. In no way has he said that tinnitus is easy, he is a neuroscientist interested in the mechanisms and aware of the complexity of the problem.

Lawrence McKenna gets a lot of crap from a lot of people, many feel he is an easy target to shout at. He does not say that mindfulness is a cure, he doesn't believe it is right for everyone. He stated very recently to me at the BTA Conference that it can help some people but not all, but that it can make a big difference for those it does help. He is very much aware that it is a tool that can be helpful to some people. That's some people, not all. He is also very aware that we have different experiences, not least because he has been a target for abuse by faceless trolls. His recent study did not use a placebo or wait list group, but instead used another treatment protocol that is known to work for some.

I have never tried mindfulness. I wonder how many of the critics here have tried it? I mean properly tried it, rather as was stated in a previous post when you get exercises to do it is rare you bother unless pressed. It is a form of neural plasticity so I believe it can have its place. I don't think it would be right for me because of the severity of my tinnitus and what I perceive as my own particular patterns of thought and behaviour.

 

[david c]

"You can tune out the sound, the experts say"

Tell these "experts" to keep their arrogant, harmful opinions to themselves. The only people that are experts regarding whether you can tune out severe tinnitus, are those with severe tinnitus. "Experts". More like know-it-all clueless bastards.

Sadly the "experts" who are saying this are the same "experts" receiving the research money from the BTA time and time again. We do indeed need to wake up to this fact. As long as tinnitus is downplayed in this way, we are never going to make progress towards a cure.

 

[JohnAdams]

Sadly the "experts" who are saying this are the same "experts" receiving the research money from the BTA time and time again. We do indeed need to wake up to this fact. As long as tinnitus is downplayed in this way, we are never going to make progress towards a cure.

Funny how people don't get that. This article also just told the public that it's basically our fault for being bothered by it because we aren't tuning it out. I genuinely hate these people.

 

[JohnAdams]

I expected more of an argument, or something. You should put that disclaimer around everything that is said here.

Considering the rapid progression of understanding the human genome and regenerative medicine, things that hold the potential to truly cure us, why do you constantly defend the old guard that sucks research funding and attention away from these things while promoting a total non cure? Why don't we just stop all research into curing any diseases and just practice mindfulness and CBT?

 

[kelpiemsp]

Considering the rapid progression of understanding the human genome and regenerative medicine, things that hold the potential to truly cure us, why do you constantly defend the old guard that sucks research funding and attention away from these things while promoting a total non cure? Why don't we just stop all research into curing any diseases and just practice mindfulness and CBT?

If our body holds the key to curing diseases (regenerative medicine, immunotherapy, or neural plasticity) then research should be focusing on these topics. Mindfullness can induce neural plasticity, lead to regenerative properties, and improve immune response. This is truly the cutting edge... unlocking the potential within the human.

Unfortunately the Old guard of taking quick fix chemicals has failed us all.

 

[JohnAdams]

If our body holds the key to curing diseases (regenerative medicine, immunotherapy, or neural plasticity) then research should be focusing on these topics. Mindfullness can induce neural plasticity, lead to regenerative properties, and improve immune response. This is truly the cutting edge... unlocking the potential within the human.

Unfortunately the Old guard of taking quick fix chemicals has failed us all.

Ok...

There are methods to regenerate the damaged parts of our inner ear that have been developed recently. This very well may cure most cases of tinnitus.

Give me one good reason why ALL tinnitus research should not be directly focused on this.

 

[david c]

Funny how people don't get that. This article also just told the public that it's basically our fault for being bothered by it because we aren't tuning it out. I genuinely hate these people.

Agree. Sufferers of ME/Chronic fatigue syndrome also faced the same problem - the systematic attempt to downgrade/downplay their condition by therapists who sought to make money out of it through various management strategies. However, the ME community worked out what was happening - that these therapists accessing all the research funding wasn't in their best interests and as a result they finally made progress with real research.

Sadly the tinnitus community hasn't realised this yet - "corporate tinnitus" in the UK has so much of a grip on the main organisations and anyone who dissents from its point of view faces a systematic attempt to discredit them. There's a lot of money in tinnitus and these organisations are ruthless at protecting their financial interests.

 

[JohnAdams]

Agree. Sufferers of ME/Chronic fatigue syndrome also faced the same problem - the systematic attempt to downgrade/downplay their condition by therapists who sought to make money out of it through various management strategies. However, the ME community worked out what was happening - that these therapists accessing all the research funding wasn't in their best interests and as a result they finally made progress with real research.

Sadly the tinnitus community hasn't realised this yet - "corporate tinnitus" in the UK has so much of a grip on the main organisations and anyone who dissents from its point of view faces a systematic attempt to discredit them. There's a lot of money in tinnitus and these organisations are ruthless at protecting their financial interests.

I wonder if these people use plungers! Or do they practice clogged toilet retraining therapy and mindfulness?

 

[kelpiemsp]

Ok...

There are methods to regenerate the damaged parts of our inner ear that have been developed recently. This very well may cure most cases of tinnitus.

Give me one good reason why ALL tinnitus research should not be directly focused on this.

Because 100 percent of tinnitus is in the brain not the ear

If people in the know really believed solving hearing loss was the panacea for Tinnitus they'd advertise that with their trials and research. Anytime you can kill two birds with one stone it adds strength to the model and the funding.

 

[JohnAdams]

Because 100 percent of tinnitus is in the brain not the ear

If people in the know really believed solving hearing loss was the panacea for Tinnitus they'd advertise that with their trials and research. Anytime you can kill two birds with one stone it adds strength to the model and the funding.

So you're saying that regenerating hearing mechanisms wont help alleviate tinnitus if your tinnitus is caused by hearing loss?

 

[GregCA]

Ok...

There are methods to regenerate the damaged parts of our inner ear that have been developed recently. This very well may cure most cases of tinnitus.

Give me one good reason why ALL tinnitus research should not be directly focused on this.

A few reasons:

• You used the word "may": that means it may also not pan out. You don't want all your eggs in the same basket. In fact, the success rate for each of these endeavors is small (probabilistically-speaking). This is why it's wise to diversify your research portfolio, because it increases your "global chance" of success (you can do the math if you are into probabilities).
• You would not be looking elsewhere for a cure, where it may be more effective and possibly faster to reach you (that's a bit of a corollary of the previous one).
• This will not work for everyone: T has various causes, some of which will be immune to this therapy. We already know this.
• Adding more resources doesn't scale linearly: to approximate that you need to have a plan that is parallelizable. The long poles are often clinical trials, which aren't parallelizable, as they have a set duration to check for effects/results: if you call for a check patients' hearing after 6 and 12 months, then adding more resources isn't going to accelerate time for you to check at 1 and 2 weeks. Many other steps aren't parallelizable either: when you have too many cooks in the kitchen, you end up going slower.
• Learning from more than 1 approach allows us to think in terms of combinations: in cases where A and B don't work in isolation, perhaps A+B does! Example: bi-modal stimulation, perhaps one of the most promising treatments in the offing today.

 

[JohnAdams]

A few reasons:

• You used the word "may": that means it may also not pan out. You don't want all your eggs in the same basket. In fact, the success rate for each of these endeavors is small (probabilistically-speaking). This is why it's wise to diversify your research portfolio, because it increases your "global chance" of success (you can do the math if you are into probabilities).
• You would not be looking elsewhere for a cure, where it may be more effective and possibly faster to reach you (that's a bit of a corollary of the previous one).
• This will not work for everyone: T has various causes, some of which will be immune to this therapy. We already know this.
• Adding more resources doesn't scale linearly: to approximate that you need to have a plan that is parallelizable. The long poles are often clinical trials, which aren't parallelizable, as they have a set duration to check for effects/results: if you call for a check patients' hearing after 6 and 12 months, then adding more resources isn't going to accelerate time for you to check at 1 and 2 weeks. Many other steps aren't parallelizable either: when you have too many cooks in the kitchen, you end up going slower.
• Learning from more than 1 approach allows us to think in terms of combinations: in cases where A and B don't work in isolation, perhaps A+B does! Example: bi-modal stimulation, perhaps one of the most promising treatments in the offing today.

I am just truly astonished.

 

[GregCA]

Because 100 percent of tinnitus is in the brain not the ear

That is a bit of a strange argument (I know you're a scholar - it's a bit surprising to see you write this), in addition to being untrue (example: otosclerosis T, there are others).

For the % of cases believed to be caused by "the brain", it is believed to be the result of a maladaptive plasticity process due to the lack of input from the ear. It is not illogical to think that restoring hearing can induce the reverse plasticity in the brain: in fact, there are many reports that hearing aids do help.

The fact that the genesis of the phantom noise is in the brain does not mean that we cannot induce change there by targeting other areas.

 

[kelpiemsp]

That is a bit of a strange argument (I know you're a scholar - it's a bit surprising to see you write this), in addition to being untrue (example: otosclerosis T, there are others).

For the % of cases believed to be caused by "the brain", it is believed to be the result of a maladaptive plasticity process due to the lack of input from the ear. It is not illogical to think that restoring hearing can induce the reverse plasticity in the brain: in fact, there are many reports that hearing aids do help.

The fact that the genesis of the phantom noise is in the brain does not mean that we cannot induce change there by targeting other areas.

thanks @GregCA! I think this relates to our previous "genesis" discussion. But it's a great debate that needs to happen. The logic behind signal timing, and indeed the entire field of neural plasticity is built on the premise of "it all generates in the brain" and that the brain has the ability to entirely reorganize itself (for both positive and negative attributes). I am truly drinking the koolaid behind signal timing, and neural plasticity.

Let's use otosclerosis for an example. One logic says that the ear has less input, thus the brain turns up its gain, because the brain wants to hear better. The brain turns up the volume and synchrony in firing of DCN results, and thus tinnitus. While one logic says fixing the ear will cause the brain to turn the signal down, the other logic says turning the brain down turns the signal down. This later logic suggests the genesis was from the brains maladaptive response.

I don't feel these are mutually exclusive. They are complimentary. Since both provide options for reducing synchrony in the DCN.

Thanks for pushing back!

 

[david c]

If our body holds the key to curing diseases (regenerative medicine, immunotherapy, or neural plasticity) then research should be focusing on these topics. Mindfullness can induce neural plasticity, lead to regenerative properties, and improve immune response. This is truly the cutting edge... unlocking the potential within the human.

Unfortunately the Old guard of taking quick fix chemicals has failed us all.

Completely disagree - I think the idea that "our body holds the key to curing diseases" is wishful thinking at best, dangerous thinking at worst - see how far that will get as a treatment for cancer for example. There is little that is cutting edge about Mindfulness - it's little more than a fad. If it works for some people that's fine but a large degree of scepticism is appropriate for the clinical trials that have claimed efficacy for it - most seem to work by trying to screen out a large number of patients to start with (as @TuxedoCat noted about Mckenna's trial).

 

[kelpiemsp]

Completely disagree - I think the idea that "our body holds the key to curing diseases" is wishful thinking at best, dangerous thinking at worst - see how far that will get as a treatment for cancer for example. There is little that is cutting edge about Mindfulness - it's little more than a fad. If it works for some people that's fine but a large degree of scepticism is appropriate for the clinical trials that have claimed efficacy for it - most seem to work by trying to screen out a large number of patients to start with (as @TuxedoCat noted about Mckenna's trial).

I work in cancer actually and luckily enough this one of my areas. Guess what? It works! We are just beginning to learn more. I read @TuxedoCat s well written response and agree with many of the critiques, but that can't be leveled against mindfulness in of itself.

 

[david c]

I work in cancer actually and luckily enough this one of my areas. Guess what? It works! We are just beginning to learn more. I read @TuxedoCat s well written response and agree with many of the critiques, but that can't be leveled against mindfulness in of itself.

Oh really! - do please explain how exactly - what exactly is your expertise in this area???

I must remember to ask the friend with cancer I know to cancel that chemo (those nasty chemicals you dislike) session and invest in some mindfulness sessions instead.

 

[GregCA]

Let's use otosclerosis for an example. One logic says that the ear has less input, thus the brain turns up its gain, because the brain wants to hear better. The brain turns up the volume and synchrony in firing of DCN results, and thus tinnitus. While one logic says fixing the ear will cause the brain to turn the signal down, the other logic says turning the brain down turns the signal down. This later logic suggests the genesis was from the brains maladaptive response.

I'm afraid there's something you don't know about otosclerosis (I'm not faulting you for that): in an important amount of otosclerosis cases, the actual noise (ie "the tinnitus) is due to the impedance mismatch between the middle ear and the inner ear at the stapes location. This is the actual genesis of the sound: the downstream processing (haircells/nerves/cortex/brain) is actually fine and reacts normally to a bogus agitation of fluid in the cochlea.

There is a scientific paper I read a couple of years ago (when I came down with O) that even explains how to compute the resulting frequency/noise of the T heard from fluid mechanics equations. I've been trying to find that paper again for a long time, without success! I wish I had saved it.

The interesting aspect of that is that a stapedotomy will result in an obliteration of T in about half of the cases, with a simple middle ear surgery, as it restores a proper impedance between the mechanical and the fluid media.

My case is an unfortunate one, in that O gave me both conductive losses and sensorineural losses. Surgery brought back my hearing on the conductive side, but obviously not on the sensorineural side: for this reason I think that in my case (which is a minority of O cases), the T I'm hearing is probably due to the maladaptive plasticity process that happened in my brain, as result of the sensorineural losses I incurred due to O.

What does baffle me a bit is that my T went from nothing to severe in just a few hours: I went to bed "ok" and woke up in the middle of the night with screeching T. I would have expected that plasticity would work its way slowly, but that wasn't the case for me.

On the other hand, if I apply my comp-sci knowledge about neural nets, I understand that there is such thing as gate thresholds for neurons (and neural nets) where the output flips only after the input reaches a certain level, much like a transistor really, so perhaps this is why it seemed to have come "in one shot" after perhaps a slow build up.

 

[kelpiemsp]

I'm afraid there's something you don't know about otosclerosis (I'm not faulting you for that): in an important amount of otosclerosis cases, the actual noise (ie "the tinnitus) is due to the impedance mismatch between the middle ear and the inner ear at the stapes location. This is the actual genesis of the sound: the downstream processing (haircells/nerves/cortex/brain) is actually fine and reacts normally to a bogus agitation of fluid in the cochlea.

I *think* I understand, and concede that in that (your) case the ear is actually generating a sound.

What does baffle me a bit is that my T went from nothing to severe in just a few hours: I went to bed "ok" and woke up in the middle of the night with screeching T. I would have expected that plasticity would work its way slowly, but that wasn't the case for me.

On the other hand, if I apply my comp-sci knowledge about neural nets, I understand that there is such thing as gate thresholds for neurons (and neural nets) where the output flips only after the input reaches a certain level, much like a transistor really, so perhaps this is why it seemed to have come "in one shot" after perhaps a slow build up.

This is where it's at! This is really the tip of the iceberg. I think it's called the membrane threshold potential, right? One belief states that synchrony in the firing of the DCN, as well as increased bursts output is present in people with tinnitus. It would make sense that this increased firing would make it more likely to exceed this threshold.

 

[kelpiemsp]

Oh really! - do please explain how exactly - what exactly is your expertise in this area???

I must remember to ask the friend with cancer I know to cancel that chemo (those nasty chemicals you dislike) session and invest in some mindfulness sessions instead.

I am a manager for one of the largest cancer prevention programs in the US. Thanks for asking. I never said don't do chemo, and I don't know what cancer your friend(s) have. But for breast cancer it kept the telomere/single‐copy gene ratio in check.

 

[JohnAdams]

thanks @GregCA! I think this relates to our previous "genesis" discussion. But it's a great debate that needs to happen. The logic behind signal timing, and indeed the entire field of neural plasticity is built on the premise of "it all generates in the brain" and that the brain has the ability to entirely reorganize itself (for both positive and negative attributes). I am truly drinking the koolaid behind signal timing, and neural plasticity.

Let's use otosclerosis for an example. One logic says that the ear has less input, thus the brain turns up its gain, because the brain wants to hear better. The brain turns up the volume and synchrony in firing of DCN results, and thus tinnitus. While one logic says fixing the ear will cause the brain to turn the signal down, the other logic says turning the brain down turns the signal down. This later logic suggests the genesis was from the brains maladaptive response.

I don't feel these are mutually exclusive. They are complimentary. Since both provide options for reducing synchrony in the DCN.

Thanks for pushing back!

!

 

[GregCA]

This is where it's at! This is really the tip of the iceberg. I think it's called the membrane threshold potential, right? One belief states that synchrony in the firing of the DCN, as well as increased bursts output is present in people with tinnitus. It would make sense that this increased firing would make it more likely to exceed this threshold.

I wish I knew - I find it very interesting but I lack the skills & knowledge to go much deeper. One interesting aspect of neural nets is that neurons on their owns aren't super complicated to model, but the topology itself is what makes it so complex... and since plasticity affects topology... it's quite a challenge to understand it!

 

[coffee_girl]

I agree with kelp but at the same time, i believe that T should be more visible in the public domain, we really do need a cure that is beyond "just tune it out".

I don't think neural plasticity should be the holy grail of Tinnitus cures.
Let's face it, the world is made up of people who will take a bullet with a smile on their face...and then there will be those who crumble over the tiniest things.

Whichever one you are, Tinnitus is an ongoing condition...it never stops because the question of "what if it gets worse" is always lingering in the air. If your hand was chopped off, no amount of crying will grow it back, yet no amount of worry will make it worse.

With T you are not given the luxury of finality, it always progresses and it always changes. Ain't nobody want to deal with that. If T always stayed the same, and it was just there and you never had to worry about it evolving or developing...i'm sure most people will just get over and move on with their lives.

 

[david c]

I am a manager for one of the largest cancer prevention programs in the US. Thanks for asking. I never said don't do chemo, and I don't know what cancer your friend(s) have. But for breast cancer it kept the telomere/single‐copy gene ratio in check.

That's interesting because the evidence for mindfulness on actual cancer outcomes seems to be very thin. I quote from a recent article:

"Though some patients may join MBIs with the hope of improving biological outcomes, it is currently premature to conclude that these interventions can influence variables such as immune function or cellular aging in clinically meaningful ways. Research on biomarker outcomes has shown small effects, inconsistent findings, and has yet to demonstrate links to health outcomes such as cancer progression and longevity."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4457221/
(I particular like the fact that the authors of this article reported no conflicts of interest - would that were the case for Dr Mckenna's tinnitus work)

Of course if you have some actual evidence to the contrary I'm sure we would be interested to hear it.

 

[kelpiemsp]

That's interesting because the evidence for mindfulness on actual cancer outcomes seems to be very thin. I quote from a recent article:

"Though some patients may join MBIs with the hope of improving biological outcomes, it is currently premature to conclude that these interventions can influence variables such as immune function or cellular aging in clinically meaningful ways. Research on biomarker outcomes has shown small effects, inconsistent findings, and has yet to demonstrate links to health outcomes such as cancer progression and longevity."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4457221/
(I particular like the fact that the authors of this article reported no conflicts of interest - would that were the case for Dr Mckenna's tinnitus work)

Of course if you have some actual evidence to the contrary I'm sure we would be interested to hear it.

You clearly are just googling and posting without reading or knowing the background literature. This study devotes an entire section to explaining the upcoming results of telomere/single‐copy gene studies. Yikes.

I will just quote from your own study because you didn't read it and bold it for you:

"Since the publication of these literature reviews, two RCTs have investigated the impact of MBSR110and MBCR111 on additional biomarkers – namely, telomere length and telomerase activity – in breast cancer patients. Telomeres are specialized structures that protect chromosome ends, with shorter telomere length associated with cellular aging, whereas telomerase is a ribonucleoprotein enzyme involved in telomere maintenance and elongation.112 Both studies report promising results, such that telomere length was maintained following MBCR relative to a minimal intervention control condition,111 and telomerase activity improved more in MBSR relative to usual care and was sustained at 12-week follow-up.110These two studies add to the growing literature on the potential effects of MBIs on biomarkers of health, given that shorter telomere length and telomerase activity have been shown to predict cancer mortality.113–115"

Also... you posted a link to a lit review study...that admits openly that it is ignoring two very successful studies currently in the pipeline.

 

[JohnAdams]

I am a manager for one of the largest cancer prevention programs in the US. Thanks for asking. I never said don't do chemo, and I don't know what cancer your friend(s) have. But for breast cancer it kept the telomere/single‐copy gene ratio in check.

So do you tell people to practice mindfulness when they get diagnosed with cancer?

 

[kelpiemsp]

So do you tell people to practice mindfulness when they get diagnosed with cancer?

No. But we help direct them to a support group that can provide this as a complementary therapy. It's not a panacea, but you can't leave these stones unturned.

 

[Ed209]

I saw a documentary once about a person with terminal, incurable cancer, recover completely after having dreams about destroying the cancer cells. If I remember correctly, the person said that they dreamt they were flying a spaceship and was shooting at the cancer. It was a completely unexplained medical mystery.

They were hypothesising, that under the right conditions, the body can heal itself but they didn't understand how.

I think there is a link between the mind and body that isn't understood yet. Some of the case studies I've read about are perplexing. It's almost as if some people have thought themselves better, quite literally.

 

[JohnAdams]

No. But we help direct them to a support group that can provide this as a complementary therapy. It's not a panacea, but you can't leave these stones unturned.

Let's make a deal. If fx322 is successful and cures tinnitus, will you make a public statement admitting that you were wrong and that I was right and then join MPP's crusade against TRT? And if not I will follow whatever stipulation you propose?