More About the BTA and Tinnitus

[Dr. Jay Hobbs]

What do you think about this?

https://www.tinnitustalk.com/thread...are-what-worked-in-my-case.31031/#post-365653

Hi John, I can't speak to it's wider usefulness in tinnitus cases, but I think this would be a great line of research.

What I DO know is that my functional lab testing of patients for various conditions (ex. NutrEval or TRIAD profile through Genova Diagnostics) frequently shows need to both NAC and ALCAR. Additionally, I take and recommend these nutrients for brain health, since they are almost always included in protocols to prevent dementia/Alzheimer's.

I tend to think of their functions in this way (although not limited to this): NAC, being an absorbable for of glutathione (detox agent) and ALCAR assists in the transfer of fatty acids into the cell for use as energy.

I am working to find a way (like an app) that is reasonable and reproducible to collect and quantify the results from the most effective known self-help approaches as well as the less common approaches, like this one. I don't have the organizational funding/structure to do big research, but I hope to do more small research and provide an avenue for others to do more research, using the the tools I develop.

 

[glynis]

It's not McKenna's book (it's written by Jastreboff and Hazell) but agree with your point that this is insulting and damaging. We support over 100 tinnitus support groups and reject this view of tinnitus groups. I think the BTA is also included in that viewpoint.

Hi @David,

I ran the Stoke on Trent Support Group with Dot and met Dave Carr whom came to our meeting.
I was responsible for the BTA fundraising e.g., Tea for Tinnitus and arranging town collections and getting local council approval and #TinnitusWeek.

Providing doctors, ENT and our group with all the BTA leaflets, books etc.

Your groups are really needed and I know we helped one member get disability.

Face to face support along with other activities; we did yoga sessions and regular sound therapy on the relaxing chairs.

The summary on McKenna's TRT book at tinnitus.org has the outrageous audacity to label support communities as "phobic training camps".

What the hell does that mean?

That is far from phobic training camps...

love glynis

PS. It was me whom got Tinnitus Talk and Tinnitus Hub to support Mental Health Week last year... Brilliant awareness.

 

[JohnAdams]

Hi @David,

I ran the Stoke on Trent Support Group with Dot and met Dave Carr whom came to our meeting.
I was responsible for the BTA fundraising e.g., Tea for Tinnitus and arranging town collections and getting local council approval and #TinnitusWeek.

Providing doctors, ENT and our group with all the BTA leaflets, books etc.

Your groups are really needed and I know we helped one member get disability.

Face to face support along with other activities; we did yoga sessions and regular sound therapy on the relaxing chairs.

The summary on McKenna's TRT book at tinnitus.org has the outrageous audacity to label support communities as "phobic training camps".

What the hell does that mean?

That is far from phobic training camps...

love glynis

PS. It was me whom got Tinnitus Talk and Tinnitus Hub to support Mental Health Week last year... Brilliant awareness.

I really didn't mean to blow up on @David today I'm just super stressed out and when I saw that it flipped me out and made me pretty upset. Obviously.

 

[david c]

Yes - we have a 'cure map' that's been posted elsewhere on this site. We list supplements and diuretics within that map, so yes, they do feature. We don't recommend people try things such as these because there is no evidence they work and may do damage. Certainly haven't decided there is no cure, although as I've already said I think there will be more than one cure for different types of tinnitus.


We don't know - no one does. It is a constant challenge I am putting ot the research community how do we effectively subtype tinnitus, identify different types of tinnitus.


It's not McKenna's book (it's written by Jastreboff and Hazell) but agree with your point that this is insulting and damaging. We support over 100 tinnitus support groups and reject this view of tinnitus groups. I think the BTA is also included in that viewpoint.


Wouldn't deny that. We're not medical or research experts nor do we fully understand all of the research out there. I think I've made this clear but apologies if not. We don't claim to be experts across all areas of research. I understand enough of it to know there's lots I don't understand (if that makes sense). I try and understand methodology of research so I can come to an assessment of what's out there.

Apologies once again for not properly researching your original question, I'll take more time before replying in the future.

Your summary of your lack of progress really shows why the BTA is going wrong - why not try to learn from success instead?

The ME Association has had huge success in the last two years in - read about their success here: https://www.meassociation.org.uk/research/current-research/

Rather than focusing on "management strategies" research - many of which the ME Association has criticised for being deeply flawed - such as the Lancet research on ME, the ME Association has focused on rigorous bio-medical research aimed at finding a long-term cure. They list 7 current research projects they are helping to fund which fall into this description. The BTA can't name a single one.

And because the ME Association has succeeded in convincing ME sufferers that's it serious about finding a cure, ME sufferers have been keen to donate. The BTA hasn't succeeded in convincing tinnitus sufferers it's serious about finding a cure - and so tinnitus sufferers have been more reluctant to give.

The idea that MCBT/CBT is a treatment for tinnitus is dangerous and unhelpful. What tinnitus sufferers in the UK really need is not talking therapy but well-funded, and properly conducted, biomedical research.

 

[valeri]

Your summary of your lack of progress really shows why the BTA is going wrong - why not try to learn from success instead?

The ME Association has had huge success in the last two years in - read about their success here: https://www.meassociation.org.uk/research/current-research/

Rather than focusing on "management strategies" research - many of which the ME Association has criticised for being deeply flawed - such as the Lancet research on ME, the ME Association has focused on rigorous bio-medical research aimed at finding a long-term cure. They list 7 current research projects they are helping to fund which fall into this description. The BTA can't name a single one.

And because the ME Association has succeeded in convincing ME sufferers that's it serious about finding a cure, ME sufferers have been keen to donate. The BTA hasn't succeeded in convincing tinnitus sufferers it's serious about finding a cure - and so tinnitus sufferers have been more reluctant to give.

The idea that MCBT/CBT is a treatment for tinnitus is dangerous and unhelpful. What tinnitus sufferers in the UK really need is not talking therapy but well-funded, and properly conducted, biomedical research.

So true!

Why are tinnitus associations running in circles for decades is beyond me!
The only logical reason that comes to mind is that they aren't interested in helping tinnitus sufferers.

Recycling and funding useless projects is not moving forward!

Personally I wouldn't give a single cent to BTA or ATA! Simply because I don't see them working to help me.

Tinnitus sufferers need proper treatment and not talk therapy! Unless this changes nothing will change!

 

[brownbear]

Perhaps the issue is that it's not enough to just save a life. Yes, he still lives, but he may be surviving rather than living a fulfilling life. I don't want to speak for him

I missed this thread completely! I'm actually really ok! I'd rather not listen to this crap but I'm happy and enjoying life again. Not that that is all down to LM. I did a bit of work on it too!

McKenna is a great guy but I must admit I'm also not sure why funds need to be given to Mindfulness research. It seems clear it is helpful, but I'd also rather money was spent in other ways (on more hardcore science).

 

[Ed209]

It seems clear it is helpful, but I'd also rather money was spent in other ways (on more hardcore science).

I agree with this.

 

[David]

Your summary of your lack of progress really shows why the BTA is going wrong - why not try to learn from success instead?

We are looking to do that, we've discussed and assessed research strategies at a number of other charities to see what we can learn. Scale is an issue for us though. I've been looking at the ME Association (not heard of them before this strand) and seeing if we can set up a meeting to find out more. It is equally frustrating from this end of the line too that more progress hasn't been made Worldwide.

They list 7 current research projects they are helping to fund which fall into this description. The BTA can't name a single one.

"Identifying and targeting possible tinnitus genes," project I've referred to previously fits this
https://www.tinnitus.org.uk/identifying-and-targeting-possible-tinnitus-genes

The BTA hasn't succeeded in convincing tinnitus sufferers it's serious about finding a cure - and so tinnitus sufferers have been more reluctant to give.

Wouldn't disagree. We did run a campaign seeking to raise significant funds to develop a 'pill for tinnitus,' but got nowhere near the target. That was a few years ago now and led eventually to us commissioning the work with Dr Schaette. So all was not lost but we certainly got nowhere near the funding we were looking for. So when we have run a specific biomedical campaign, we haven't necessarily succeeded.

We are working to look at how best to design work to progress towards a cure. This is frustrating and moving far slower then I'd like at the moment as it is a major challenge to figure out where we'd be able to make the most progress and exactly how much it would cost. Everyone has an opinion and we've sought to consult with all key players (and of course with people living with tinnitus) on how best to design something to move curative tinnitus research forwards. A lot of the work I've spoken about so far is leading to this, looking for collaboration and how you pull in funders with far deeper pockets than the BTA, along with how to get more support from the tinnitus community. We're aiming to pull together something for Spring next year. I know that seems a long way away but I want to make sure what we put together is robust, the costs of the project realistic and will have the impact to move research forwards globally.

None of this is straightforward, if it was, it would have been done already.

McKenna is a great guy but I must admit I'm also not sure why funds need to be given to Mindfulness research. It seems clear it is helpful, but I'd also rather money was spent in other ways (on more hardcore science).

Glad it was helpful for you. At the time, no one knew if it was or wasn't. The BTA felt we should fund hardcore science but at the same time (as a lot of that is speculative), we should try and provide an evidence base for treatments that are available now.

 

[TuxedoCat]

Not that that is all down to LM. I did a bit of work on it too!

Glad that you give yourself credit for the fact that you are feeling better.
From my vantage point in the US, Dr. McKenna seems a polarizing figure on this forum- people love or hate him. Your view is sensible- it wasn't all down to LM or any other therapist for that matter.

I must admit I'm also not sure why funds need to be given to Mindfulness research. It seems clear it is helpful, but I'd also rather money was spent in other ways (on more hardcore science).

Your post suggests to me that BTA need to be mindful of putting too much emphasis on attempts to elevate soft science to the level of hard science in tinnitus research. Healing practices are best utilized in Integrative Medicine.

Our longer term research strategy is to move away from research into ways to manage tinnitus and into lobbying others for significant funding to go into cure based research.

This is good news. Have BTA identified when they will begin to implement this strategy?

Take care,
TC

 

[Manny]

@David regardless of any personal opinion of mine regarding the BTA, on an individual level thank you for participating in this site and taking the time to answer questions in a dedicated and friendly manner. Respect.

 

[Manny]

@David regardless of any personal opinion of mine regarding the BTA, on an individual level thank you for participating in this site and taking the time to answer questions in a dedicated and friendly manner. Respect.

Ah and btw @David I was curious as to your position within the BTA so I reverse image searched your photo... and look what came up. Llllol. Indeed.

 

[david c]

Following recent comment that reports of ME sufferers taking on the CBT industry as "bilge" I have passed this to the ME society for comment.

ME sufferers in the UK have been hugely successful in getting biomedical studies underway. They were able to achieve this only by ensuring that the false claims of "management strategies" for their condition were challenged. Tinnitus sufferers sadly will only start to see the same progress in bio-medical research when they start to do the same.

 

[Greg Sacramento]

Tinnitus sufferers sadly will only start to see the same progress in bio-medical research when they start to do the same.

There's several companies doing bio-medical research now on neuro disease with a total of 650 million dollars in cash. Their research includes all the biology that associates to tinnitus, but they have their studies placed under CNS disease and not tinnitus. There's other companies in Cambridge, Massachusetts looking for compounds under the financial umbrella of large drug companies. One bio tech has an injection drug for neck artery cancer that causes tinnitus. As we know tinnitus is caused by many things, but big money from Wall Street is being used.

 

[david c]

There's several companies doing bio-medical research now on neuro disease with a total of 650 million dollars in cash. Their research includes all the biology that associates to tinnitus, but they have their studies placed under CNS disease and not tinnitus. There's other companies in Cambridge, Massachusetts looking for compounds under the financial umbrella of large drug companies. One bio tech has an injection drug for neck artery cancer that causes tinnitus. As we know tinnitus is caused by many things, but big money from Wall Street is being used.

As you yourself point out the bio-medical research which you mention (no links given but I'll take your word for it) is not primarily investigating tinnitus but other aspects of neuro-science. Hopefully some of what is found out will be of use to tinnitus studies but this isn't its primary goal.

In contrast the ME association lists a number of bio-medical studies specifically focused on ME: https://www.meassociation.org.uk/research/research-projects/current-studies/

As I've pointed out the ME Association's focus on bio-medical research -contrasts with British tinnitus charities (including both BTA and AOHL) whose recent funded research has almost entirely focused on management strategies research not bio-medical research. The most recent BTA sponsored Expo's main "take-away" appears to be yet another "sound" device designed to make yet more money for the audiological industry ...

 

[glynis]

@david c,

@David did point out they will be focusing on management and not research and will direct others towards research who have the money behind them.

The BTA do a fantastic job with the finances and work force, but money for research is so much needed and it needs maybe a united fundraising for research support.

love glynis

 

[david c]

@david c,

@David did point out they will be focusing on management and not research and will direct others towards research who have the money behind them.

The BTA do a fantastic job with the finances and work force, but money for research is so much needed and it needs maybe a united fundraising for research support.

love glynis

The ME Association in contrast has taken a very different approach to another little understood medical condition. Their focus on bio-medical research rather than management strategies has attracted far higher donations - as donors see that the charity is serious about research for a cure. They have therefore been able to put these donations towards significant bio-medical research. I think it's pretty clear which is the more successful approach.

 

[Greg Sacramento]

@david c Thanks for the information. I did post links and information to a public company doing brain studies with a drug for depression that's in a final stage with the blessing from the FDA. However, they are now having a problem with the correct injection dosage. I hope they figure a way to overcome this because the drug is not a benzo, has no other side issues and does not need to be tapered from discontinued use. This company like almost all companies does not use tinnitus in the heading, even though tinnitus is mentioned in their research horizons. I had posted a linked form where all one had to do was say please conduct a brain tinnitus study and hit send. I know that no one bothered.

Another public company whom I did not mention the name because of ethics has developed an injection for neck and artery cancer that causes tinnitus. Again, tinnitus is not mentioned in title study.

We need to convince companies and universities to spend more of their millions and billions of medical research dollars on tinnitus research, but it's all about doing productive and responsible studies and some don't know what to do next. Billions of dollars are being spent on physical medical conditions that can associate with tinnitus. Tinnitus isn't caused by just one condition and there will never be a single cure. Only 2 to 5% of those with tinnitus have it severely. Many of those with tinnitus do see improvement and governments and academics know that.

We also need more awareness from the medical treatment community to use some of the treatments and procedures already discovered. We need hospital associated team care for those with physical tinnitus.

I would just rather place research discussion aside and continue in trying to assist others mostly by PM with their physical and neck tinnitus. Many have said that they have received improvement, some being substantial.

 

[David]

This is good news. Have BTA identified when they will begin to implement this strategy?

Aiming for Spring. Need to make sure we've got things aligned and ready to go. So the economic report, 'cure map' are all part of it. Now looking to publish a paper using the academic paper and making our case for what needs to happen next. None of it will surprise people on here, but want to make sure we can back what we're saying and are prepared first.

Ah and btw @David I was curious as to your position within the BTA so I reverse image searched your photo... and look what came up. Llllol. Indeed.

Little bizarre! If you Google my name then I'm a goalkeeper, playing for Southend United currently. He did play for my team, Hull City for a while. Enjoyed going to games and hearing, "Playing in goal for Hul City #1 David Stockdale!" A man can dream!

I'm the Chief Executive.

Tinnitus isn't caused by just one condition and there will never be a single cure.

Agree with this, think there'll be cures as opposed to a cure. Need to subtype better first - this work is starting but it's early days.

 

[JohnAdams]

@David
So in searching for a cure, I discovered that curcumin quiets my tinnitus tremendously and attenuates my hyperacusis while I am taking it. FACT. It didn't cure me but it's certainly better than lipoflavonoids, which don't work.

I mean curcumin has an almost immediate effect on my tinnitus.

Where's the BTA on that?

What are you doing? It's like the BTA is Gollum and CBT and TRT is "my precious" or something.

All you need to know? That's a lie.

 

[attheedgeofscience]

McKenna is a great guy but I must admit I'm also not sure why funds need to be given to Mindfulness research. It seems clear it is helpful, but I'd also rather money was spent in other ways (on more hardcore science).

This is a topic that is raised every so often i.e. "why spend money on evaluating existing 'therapies'?". Given the interdisciplinary nature of tinnitus, there may potentially already be remedies out there that reduce symptoms of tinnitus – such as:

• Cognitive therapy
• Electrical stimulation of the ear
• Tailored rTMS

Having treatments already available on the market obviously bypasses the usual lengthy clinical trial process (and hence promising existing treatments should be considered in those instances). The repurposing of existing drugs for tinnitus/hearing loss was actually something Prof. Moore had as a specialty (Team Trobalt days).

 

[david c]

This is a topic that is raised every so often i.e. "why spend money on evaluating existing 'therapies'?". Given the interdisciplinary nature of tinnitus, there may potentially already be remedies out there that reduce symptoms of tinnitus – such as:

• Cognitive therapy
• Electrical stimulation of the ear
• Tailored rTMS

Having treatments already available on the market obviously bypasses the usual lengthy clinical trial process (and hence promising existing treatments should be considered in those instances). The repurposing of existing drugs for tinnitus/hearing loss was actually something Prof. Moore had as a specialty (Team Trobalt days).

Indeed these sort of studies on existing therapies do get done from time to time. If this was only one part of the BTA's research effort it might be more comprehensible. Sadly this has been the entire focus of their research. I think most donors to tinnitus research in the UK have got the message by now. They have realised that the BTA isn't interested in sponsoring research towards cures for tinnitus but only in the management strategies research which are in the interest of its corporate sponsors and have looked elsewhere to donate.

 

[ruud1boy]

@david c

I am not one for attending seminars and conferences for tinnitus. In the 22 years that I have had this condition, I have yet to see any benefit come from them and will leave it at that.

Michael

I've got to say, I'm both surprised and disappointed at your standpoint in this debate Michael.
You kindly provided me with a copy of your tinnitus essay a year or two ago and I was re-reading it again just today , entirely by coincidence. In it, you recount the story of the video you borrowed, looking for information on tinnitus - 'where is my tinnitus??' etc.
How can you say you see no benefit in information about tinnitus being made more widely available to sufferers??

 

[ruud1boy]

I'm not sure that's what the statement means, it is unclear and confusing, I'll take it up with our Comms Manager and see if we can clarify it.

Loudness, intrusiveness and stability do matter and that's been recognised in many studies, including the COMIT'iD study - which Tinnitus Hub and BTA (we funded part) were both involved in. This was looking to design a questionnaire around what was important for different types of research study to evaluate and both loudness and intrusiveness were high.

I think what Autumnly is getting at is that this has been postulated by Lawrence McKenna previously - 2 people can have equally horrendous shrieking tinnitus, but 1 can learn to ignore it somehow and the other suffers massively. Why would that be? An interesting question for the academics, but not for me, mainly because I am 'the other'.

 

[Michael Leigh]

I've got to say, I'm both surprised and disappointed at your standpoint in this debate Michael.
You kindly provided me with a copy of your tinnitus essay a year or two ago and I was re-reading it again just today , entirely by coincidence. In it, you recount the story of the video you borrowed, looking for information on tinnitus - 'where is my tinnitus??' etc.
How can you say you see no benefit in information about tinnitus being made more widely available to sufferers??

Please don't be disappointed with my comments @ruud1boy for I wouldn't make such a statement if I did not believe it to be true. When I wrote my reply to david c, I could have been a lot more candid which is what I wanted to do. I standby what I wrote in my article: Tinnitus, A Personal View, and the comments I made about the ENT Dr in the video that I borrowed 22 years ago. He was supposed to be a tinnitus expert, but within a very short while I knew this person had never experienced tinnitus and furthermore knows nothing about the condition, other than what his tinnitus patients tell him.

He may be an excellent ENT doctor and knows all about the anatomy of the: Ear, Nose and Throat. Tinnitus is an entirely different kettle of fish. Unless a person has the condition then they cannot possibly know anything about it or how it affects a person emotionally which is where its at.

It is for this reason I said to david c, I would not attend tinnitus seminars or conferences. I have two DVDs that I bought some years ago. They are recordings covering a two day tinnitus seminar here in UK. Most of it taken up with ENT doctors and other health professionals, patting each other on the back and lording it over the seated audience before them, who are members of the public suffering with tinnitus. One can clearly see these health professionals, standing at the podium relishing in the spotlight and baffling people with their medical jargon but know nothing about tinnitus!

I wish you well.
Michael

 

[jay777]

2 people can have equally horrendous shrieking tinnitus, but 1 can learn to ignore it somehow and the other suffers massively. Why would that be?

There is no way to measure tinnitus, so how could they be equal?

 

[Agrajag364]

Indeed these sort of studies on existing therapies do get done from time to time. If this was only one part of the BTA's research effort it might be more comprehensible. Sadly this has been the entire focus of their research. I think most donors to tinnitus research in the UK have got the message by now. They have realised that the BTA isn't interested in sponsoring research towards cures for tinnitus but only in the management strategies research which are in the interest of its corporate sponsors and have looked elsewhere to donate.

This is a key question. Who are its corporate sponsors? Does it list them on its website?

 

[david c]

This is a key question. Who are its corporate sponsors? Does it list them on its website?

There's a list of them here: https://www.tinnitus.org.uk/about-our-corporate-members
unsurprisingly many are audiology companies. These aren't the only commercial connections the BTA has though as many of its advisory board members also have commercial interests with audiology companies and other management strategies "interests" such as CBT and Mindfulness.

 

[TuxedoCat]

think what Autumnly is getting at is that this has been postulated by Lawrence McKenna previously - 2 people can have equally horrendous shrieking tinnitus, but 1 can learn to ignore it somehow and the other suffers massively. Why would that be? An interesting question for the academics, but not for me, mainly because I am 'the other'.

How would Dr.McKenna know the volume of anyone's tinnitus? There is no objective measure of tinnitus loudness.

If there were a effective treatment or cure, this wouldn't be an issue and Dr. McKenna would have to share his wisdom elsewhere.

 

[GregCA]

How would Dr.McKenna know the volume of anyone's tinnitus? There is no objective measure of tinnitus loudness.

You can do a volume match (a few people on here have done it), which represents the volume "as it is perceived by you", which is all that matters really when it comes to assess the psychological impact of loudness.

Many scientific studies that have volume as outcome measure use such sampling techniques and seem to get consistent results.

In other words, we can't use an instrument to measure it independently from the patient, but we can get a number that is reasonable to use for all practical purposes.

 

[ruud1boy]

There's a list of them here: https://www.tinnitus.org.uk/about-our-corporate-members
unsurprisingly many are audiology companies. These aren't the only commercial connections the BTA has though as many of its advisory board members also have commercial interests with audiology companies and other management strategies "interests" such as CBT and Mindfulness.

Would you rather the BTA didn't accept corporate sponsorship and had even less money with which to pursue your flights of fancy?