Talking Tinnitus — a U.K. Expo in Birmingham on Saturday, 15th September, 2018

@David,
It is going to be amazing and hey finally get to meet you guys after such a long time, along with our Tinnitus Hub team...

My tickets are from 11am entry as at the time we didn't know we would have a stall too...

I hope this is a first of many.

See you soon.

love glynis

 

@David not anymore. At least not to me in California! Thanks to Tinnitus Talk/Hub and @Markku and @Steve.
I so admire how you take time here on the board. It is nice to have a real face with your words.

@Hazel I assume that is your modeling of the Tee Shirt? You are beautiful and thanks for everything you and everyone like @glynis, @Markku, @Steve, @Jazzer and everyone I may have missed for the upcoming September event.

Oh it would be nice to have a little video done to share with us way over yonder...

 

It won't be long now...

 

Wish I could be there to meet so many of you people. I anticipate this to be a really great event!!

The tee shirts are great!! And @David was so kind to post here for everyone. To me that is important.

 

This thought keeps running through my mind, so I need to pass it on.

Would it be feasible, if appropriate, for Tinnitus Hub to place a small donation/charity box for coins and small bills on their table at the BTA Expo? The donations would go for support of tinnitus research in memory of Daniel - I'm assuming whatever is collected could somehow be added to the GoFundMe account. The BTA Conference precedes the Expo so perhaps Tinnitus Hub could do the same there, if they are attending.

Thanks, TC

Here is an example of a small box, medium or large box would cost more.
https://www.mycharityboxes.co.uk/ac...display-donation-ballot-box-w-lock-option-16/

 

Gutted I can't attend as can't rearrange prior commitments. Hope the day goes well for everyone.

 

Have just read the list of speakers and pretty disappointing. Little new research and Laurence McKenna popping up yet again - this man must have taken so many thousands from the small pot of funds BTA has over the years (money which could have gone to original research) to support his Mindfulness therapy practice. Not once in these studies has his approach ever been tested against placebo.

I'm glad that at least the Tinnitus Hub is offering some objective non-profit advice at this event to compete with all the commercial companies BTA has invited - who all want the desperate tinnitus sufferers' money. As a tinnitus patient there you might as well be walking round with a big pound sign on your head.

 

Sorry to hear you feel that way. We're looking to show research that has led to a therapy/device, etc currently available now. Open to suggestions of any we should include in this or future events?

We've funded two projects with UCL, where Dr McKenna is the lead applicant. Full details here;
https://www.tinnitus.org.uk/cbt-for-tinnitus-related-insomnia
https://www.tinnitus.org.uk/mindfulness-behavioural-cognitive-therapy-study

This is available on the NHS, via the Royal National Throat Nose and Ear Hospital, Grays Inn Road, London.

Full Randomised Control Trial study paper, assessing mindfulness based CBT - including an active placebo is available to read here;
https://www.karger.com/Article/FullText/478267

We've invited companies so people can look at and evaluate what's available in a safe and supportive environment. If people don't want to look around the exhibition or interact with people on the stands, they don't have to.

We're happy they'll be there too!

 

Actually yes.

A study of the use of HBOT for patients with acute tinnitus and hearing loss (less than 6 months).

A study of the use of Clonazepam for patients with chronic tinnitus.

Each one to be placebo tested. (And that is actual placebo - a little white tablet. Not some rubbish "relaxation" techniques.)

And no doubt available privately as well. Maybe you can tell us how much Dr Mckenna charges for his "therapy" rubber-stamped by the BTA at considerable cost to its limited research funds?

This wasn't a proper placebo tested trial - ie no use of a little white tablet which the therapist tells the patient will improve their tinnitus was issued. Instead apparently some relaxation techniques were used - no doubt designed to be so rubbish that anything else was seen as preferable. When Lawrence Mckenna does an actual placebo trial - with little white tablet as placebo (ie the internationally recognised placebo effect) do let us know!

How nice of you! Did these companies pay anything for the privilege of getting commercial access to some vulnerable tinnitus patients. If so how much and who to?

 

I'm assuming these aren't available for presentation if the suggestion is to trial these? We're only looking to present research at the conference that has concluded.

I've no idea how much Dr McKenna charges or if he does. It is not rubber-stamped by the BTA. Nor is any other research we fund, and like everyone else we await definitive proof of any treatment. The results of this trial need replicating by other groups to verify and ideally evaluated in an independent systematic review.

I do recommend you read the paper, the relaxation group also improved significantly. It was a valid and active placebo.
'Little white pills,' are not valid in psychology trials. For example - if you signed up for a trial into 'mindfulness' and were given a little white pill, you'd know you were in the placebo group - making it invalid. So trials tend to be designed with as similar a intevention, as the active intevention as possible. Hence here choosing relaxation. It is also why in a trial of a sound therapy (for arguements sake) a good placebo would be the same device but programmed differently or not to the protocol. Again, if you signed up for a sound therapy trial and received a white pill, it would be obvious you were in the palcebo group.

They do - we wouldn't be able to afford to put on the day otherwise. The amount is commercially sensitive, so won't be published. BTA staff will be around and will support people with independent information, as will Tinnitus Hub I'm sure. We will also have information for people about how to access free support either through the NHS in their area or via the BTA. We really want to give people the ability to understand all of the options available and be able to then make an informed choice about what they want to try, if anything.

 

No these are two important potential treatments which the BTA has given absolutely no money for research. Instead it has given Lawrence Mckenna money time and again to perform the same research.And maybe you would like to repeat your assertion that the BTA has only funded research by Dr Mckenna twice? (as records suggest differently.)

Well that's quite easily solved - you can ask him the question. After all if you are funding his research over and over again that sort of due diligence should be automatic.

I did which is how I know that a real placebo - the little white pill - wasn't used.

Tinnitus is NOT a psychological condition - anyone indicating that it is has no place being the head of a tinnitus charity.

Again very easily solved. Offer a clinical trial offering treatment for tinnitus but don't give any more information than that. The real reason that no "little white pill" placebo test for mindfulness tinnitus trials has ever been given is that the mindfulness results would perform so badly in comparison to placebo.

Well how very convenient. Actually it would be much, much better if you were open and transparent about this. Then the tinnitus patients attending this day would be in a much better position to know exactly how much each company was paying to gain access to them.

 

To my knowledge the BTA has never received an application to investigate either of these. We ask for applications but can only assess the applications we receive.

I didn't. I was trying to make the point that the trial was assessing a psychological intervention. Apologies for not being clearer.

You're making me doubt this now! Pretty sure it's 2. Which other ones are there? We've funded research to verify (or otherwise) the model of tinnitus Dr McKenna developed, this was a study via the University of Nottingham though, not with Dr McKenna.

We have been transparent that companies are paying to exhibit, and one is a sponsor. There's no way to do the expo on this scale without them. There's no need for people to visit the exhibition - it's only one part of the expo - and if people are overly concerned there's no compulsion to attend.

 

@David Your organization supports prevention education / awareness and management of tinnitus and that is good. Most with tinnitus do not have moderate to severe tinnitus, but mild tinnitus as your organization and others have quoted. Tinnitus has many causes, hundreds in fact where the cause could be a nerve ending of the facial nerve which could cause many other physical and somatic issues. The problem is getting medical communities to form teams of doctors to help a patient. Not likely as time and expense is a factor. Mindfulness, relaxation techniques and sound therapy is a positive for most with tinnitus, but for those with more severe tinnitus there's not many success stories.

Actually this is our best hope for those with moderate to severe tinnitus. There's a couple of therapeutic companies in Cambridge, Massachusetts that have hundreds of millions of dollars in investment backing for treatment of the central nervous system. There research also includes sleep disorders, neuropathic pain, GABA hypofunction and GABAA receptor modulators. One company has a depressive drug, a non benzo with no real side effects that can be tapered in 3 days. This drug has been given a go ahead fast track status by the FDA for a final trial. The results in lower stage trials were very positive. These companies have mentioned tinnitus drug research as a possible future goal. Why not support and encourage these drug companies for a tinnitus drug.

 

I agree. The research seems to suggest that many of these therapies help all groups and people with severe tinnitus moreso than other groups. BUT the success stories aren't out there for the severe groups, which provides a contradiction. Lots of hypotheses as to why this is.

I think 2 points have been conflated. 1. Pills as a placebo for a psychology treatment isn't particularly valid. 2. We do support drugs trials, as and when they ask for support or when we find and come into contact with them. We have supported or have relationships with many of the companies active in the UK. Not so much those solely in the USA or elsewhere. We'd love to but probably aren't much use to them currently. It's something we're looking to do more of. What I would say from discussions I've had with pharma companies in tinnitus and associated fields is they do understand tinnitus, understand the challenges and are searching for opportunities.

These conversations feel like they've veered off topic a little but I'm always up for discussing this sort of thing. Tinnitus research is fascinating, something we're all really passionate about. We'll always have different thoughts on this, I'm up for discussing these with an open mind.

We're trying to publish a paper on the future of tinnitus research currently, will share and debate when we have it.

 

Absolutely Right !!!!!!!!!!

 

Have any members of Tinnitus Talk bought a ticket to the BTA Birmingham Talking Tinnitus Expo in September?

We would all love to meet you in person if you can make it.

love glynis x

 

I'm happy that there's going to be some kind of event. Even if you don't get everything right the first time, it paves the way to do better the next time (I assume that there will be another event like this in the future).

As for us poor people with severe tinnitus (myself included) perhaps a good way to represent us in this expo or the next one is to simply tell our story. I'm sure that if asked, myself and a few other people who are affected by our severe tinnitus would love to pen up a short (and RESPECTFUL) snippet about our tinnitus and our experiences for someone to read. We don't have to have a whole panel devoted to us to make an impact. I know when I told my "success" story on here it had a profound impact on various levels for many members here.

Don't give up hope yet people! If you want your story to matter then you've got to tell it to people who will listen. We've got an expo which is a giant platform of people talking about tinnitus. I'm sure people there will listen.

I guess what I'm trying to say is make your story count. Just like we've got to make this expo count.

(For those asking, yeah I'm still processing Danny's passing too. I would have loved to see what he had to say about this expo).

 

Also thank you @David for getting involved and joining us here on Tinnitus Talk.

May not seem like it but I'm sure there are more than a few of us who appreciate your presence here

 

Autumnly I know where you are coming from.

I consider my Tinnitus to be severe.
Loud, intrusive, permanent.

It cost me my passion in life, my skill, my musical voice, my career, my income, my composure, my silence.

My Tinnitus was mild and no trouble to me for over 20 years, but then after one traumatic gig, all hell broke loose.

I can tell by reading several posts on here, by those that I think of as ‘casual hobbycraft Tinnitus dabblers’ that they see Tinnitus as merely the equivalent of their own experience.

Volume and intensity make a massive difference.

Somehow, someway, we need to get the message out there that Tinnitus is a truly serious business, and that we need much better funding for it.

Generally speaking, the man in the street has sympathy for cancer, diabetes, heart disease, but not for us.....the real sufferers of Tinnitus.

 

In order to help people make an informed choice, there could be a talk to educate about what to look out for when choosing a tinnitus product and especially how to evaluate the support for claims being made about a product or procedure. Maybe too late for this expo, but maybe more important when considering supplements, etc sold over the internet. Maybe something in print? -TC

 

Fantastic idea, thanks TC. Leave it with me, will see what we can do.

 

This will be part of the expo, we also include stories like this in our magazine Quiet, (as does ATA in Tinnitus Today). It's the most valued part of our magazine by readers. We also use stories like this as 'case studies,' for the media (assuming people are willing to discuss their tinnitus on radio, TV, press, etc.), particularly when we have an awareness campaign or for Tinnitus Week. Noticed you're in the US, if you reached out to the ATA sure they'd be interested in highlighting your case.

As @Hazel mentions, could also use social media to raise awareness of your story via Tinnitus Hub.

So there are opportunities to do this and we're always looking for people willing to put themselves forward in this way.

 

@David,
Are you taking items from the BTA shop to sell on your table?

The big books on tinnitus with big images and exercises I'm sure will go down well for the deaf and visually impaired as went down well at the Stoke on Trent Support Group.

love glynis

 

Has the Nottingham study been published? - TC

 

@David our stories are important and I am glad to read that they are often included in your publication Quiet. I am not sure how to address the ATA issue. The ATA changed paths back in about 2006 and decided to take the research only road which failed drastically. At that time they cut off all programs directed towards helping tinnitus sufferers. And let me tell you that was a BIG mistake taken on by egotistical board and the staff director who ended up getting fired shortly after. Wasted money. The lose of many donor large and small. And the organization continued to spiral downwards.

What is important is to have that bridge meaning us..severe sufferers who often do not have the ability to make it through and connect this with the research grants to ensure the reasons for a cure are understood.

Don't allow the BTA to have that same fate. Do not underestimate the importance of the tinnitus sufferers. And this is something I know you believe in @David. You care about the tinnitus community over the constant complaining about research money not being spent. Tell those people to donate if they want a voice! They can donate to BTA research or other programs or towards the organization's costs to continue on.

I was there back then and chose to leave and remain silent. But that is a choice that I now will speak openly about because we need to embrace the suffering.

And this is why I am here at Tinnitus Talk. I believe in their cause and efforts that go unnoticed. I am proud that Tinnitus Talk is working with the BTA. The amount of time they are donating is incredible.

 

Looks like it will be great

I might attend next year, if there is another one then.

Before I got tinnitus, I was thinking about taking my personal blog to a higher level.

This seems like an excellent idea to do a series of posts on to raise some awareness! There can never be enough of that.

I hope by this time next year... I’ll be up and writing again

 

The latest paper is here;
https://www.ncbi.nlm.nih.gov/pubmed/27560491

There's more to come. A full list of this groups latest research papers is in the right hand coloumn of this page;
http://www.hearing.nihr.ac.uk/research/Tinnitus-and-hyperacusis