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

[David]

Hi @Starthrower sorry to hear of your experience with the ATA. It's always tough when you get a lot of passionate people around a table with strongly held views to identify and agree on the best way forward.

The BTA has been in similar positions in the past and at one point led to a group leaving to form a research only tinnitus charity (Action for Tinnitus Research) because the BTA did not solely fund research - this charity eventually merged with another and now no longer exists.

There's always a contanst tension between research and support - where's best to invest meagre funds?

What I would say is that we need a strong ATA. There needs to be a voice representing American people living with tinnitus, with a clear remit to improve services and develop research. There's a new Executive Director (Torryn Brazell) who has been much more open and receptive to working with the BTA than any of her predecessors (which we're taking as a good sign) - there's also a lot of new board members. They're doing a lot of foundation work to try and change to the direction you suggest and it's worth supporting them in the hope they can get there.

They've also moved offices to DC, so the opportunity to lobby for more investment in tinnitus research and awareness is promising.

 

[Starthrower]

@David thank you. I hope you are right.

 

[glynis]

Do we have a member who could join us at the Talking Tinnitus Expo in Birmingham on 15 SEPTEMBER...?

We would really appreciate an extra pair of hands to help out on our stand.

This will help give each other a small break as well as having a look around the rest of the Expo.

If you're interested and would like to get involved, please PM either
@Markku,
@Hazel,
or @glynis.

 

[OnceUponaTime]

I wish I could go @glynis!!!

But it is too far for me and I do not think I can take all the noise there.

I hope you all have a good time and pray that your presence be of great impact and we can get the help we really need.

Thank you for your hard work, time and dedication.

There is hope!

 

[Steve]

We're going to be involved with interviews of people who are doing talks at the conference, not sure we'll get to everyone but if you want something particular from any of the speakers please let us know.

Conference speakers can be found on the PDF programme.

Additionally, the Expo programme has also just been published, see below:

 

[Candy]

Hi @glynis,

Do you still need an extra pair of hands? I'd be happy to help... Will drive up from London in the morning...

 

[Markku]

Hi @glynis,

Do you still need an extra pair of hands? I'd be happy to help... Will drive up from London in the morning...

Offer would be graciously accepted! Thank you very much.

There's definitely a need for an extra pair of hands.

@Hazel and we started a PM with you

 

[glynis]

@Candy,

We need you

Fantastic and great to have you with us.

See you soon,
love glynis x

 

[glynis]

@Steve,

Can you ask a question at the Expo on the talk on "Tinnitus and Counselling ".

Ask them would tinnitus sufferers benefit from early on counselling?

eg-

Someone who's struggling coping with tinnitus is going to the doctor, would they feel better if the doctor said:

"Would you like to talk to someone about your tinnitus and emotions, such as with a counsellor, as it does help"?

love glynis x

 

[jimH]

@Markku,

What about expenses for Tinnitus Talk because of the Expo? Is there a real need for some additional financial help for Tinnitus Talk at this time?

Those of us that can afford to can "Go by giving if we can't give by going" as they say....

 

[TuxedoCat]

We're going to be involved with interviews of people who are doing talks at the conference, not sure we'll get to everyone but if you want something particular from any of the speakers please let us know.

Could you please ask Dr. McKenna any (or all) of the following-

• Is psychological therapy like MBCT considered a complimentary therapy or conventional medicine?

• How are psychological therapies the same or different than the placebo effect? What is the role of the placebo effect and enhancers of the placebo effect in psychological therapies?

• Information about mindfulness therapy on the BTA website says that avoiding quiet places, using sound generators, keeping busy and using distractions are manifestations of worry and attentional focus on tinnitus that make habituation less likely to happen. (The Psychology of Tinnitus https://www.tinnitus.org.uk/mindfulness-for-tinnitus). Yet, these very things are prescribed by healthcare professionals, such as yourself, during TRT and recommended by audiologists and other healthcare professionals. Please comment.

Many thanks, TC

 

[david c]

Could you please ask Dr. McKenna any (or all) of the following-

• Is psychological therapy like MBCT considered a complimentary therapy or conventional medicine?

• How are psychological therapies the same or different than the placebo effect? What is the role of the placebo effect and enhancers of the placebo effect in psychological therapies?

• Information about mindfulness therapy on the BTA website says that avoiding quiet places, using sound generators, keeping busy and using distractions are manifestations of worry and attentional focus on tinnitus that make habituation less likely to happen. (The Psychology of Tinnitus https://www.tinnitus.org.uk/mindfulness-for-tinnitus). Yet, these very things are prescribed by healthcare professionals, such as yourself, during TRT and recommended by audiologists and other healthcare professionals. Please comment.

Many thanks, TC

Good question. Someone may also want to ask Dr McKenna about the very clear conflict of interest as he is making money out of what he supposedly independently researched - MCBT for tinnitus.

 

[glynis]

@Markku,

What about expenses for Tinnitus Talk because of the Expo? Is there a real need for some additional financial help for Tinnitus Talk at this time?

Those of us that can afford to can "Go by giving if we can't give by going" as they say....

@jimH,
That is a lovely thought.

A donation to Tinnitus Talk is always graciously received towards the running of the forum and our awareness activities.

​

For the Expo we have designed flyers, t-shirts and other promotional materials (some examples below). Having all of it done and printed costs money, so any and all help is always welcome from our lovely members. On top of this there are other expenses (e.g. travel, accommodation) that we are paying out of our own pocket. Some of us are taking unpaid time off our day jobs to be able to attend the expo.




love glynis

 

[advocate21]

Can you ask Torryn Brazell (head boss at ATA) what research ATA has funded in the last 2 years? Why hasn't it been updated on their website?

Can you ask Torryn also how many members worldwide ATA has?

 

[Starthrower]

On top of this there are other expenses (e.g. travel, accommodation) that we are paying out of our own pocket. Some of us are taking unpaid time off our day jobs to be able to attend the expo.

Thank you!! So many don't realize how much this costs and you guys never complain about it. That is why I donate to Tinnitus Talk.

 

[Consider]

@Steve @glynis @Markku @Hazel @David

Dave Carr's "Will there ever be a cure" talk.

I'm interested to know what his thoughts are.

Are these talks streamed online?

 

[Steve]

@Steve @glynis @Markku @Hazel @David

Dave Carr's "Will there ever be a cure" talk.

I'm interested to know what his thoughts are.

Are these talks streamed online?

There's no recording of the talks as far as I know but I'm sure we can get an interview with Dave about it.

 

[jimH]

On top of this there are other expenses (e.g. travel, accommodation) that we are paying out of our own pocket. Some of us are taking unpaid time off our day jobs to be able to attend the expo.

A big "Thank You" to you @Markku @Steve @Hazel and @David for all that you give of yourselves and do.

I'm glad that you gave us an idea as to your personal sacrifices in time, effort and in using your own personal financial resources to accomplish the mission. Not only for the Expo but for what you guys do all year long.

I hope that other Tinnitus Talk members, in addition to myself, will now have an even greater appreciation for what all of you do!

 

[David]

@Steve @glynis @Markku @Hazel @David

Dave Carr's "Will there ever be a cure" talk.

I'm interested to know what his thoughts are.

Are these talks streamed online?

No plans to stream. I've written a post which covers the meaty bits of this talk - and I REALLY want to post it!

However we need the article on which it's based to be published in an academic journal (as they're the audience who need to read it) first, so that me publishing the gist elsewhere doesn't prejudice the article publication.

So sorry, bit of a wait until I can publish it but sure people will be reporting back on Dave's talk.

 

[Starthrower]

We're going to be involved with interviews of people who are doing talks at the conference, not sure we'll get to everyone but if you want something particular from any of the speakers please let us know.

Conference speakers can be found on the PDF programme.

Additionally, the Expo programme has also just been published, see below:
View attachment 21539

Very impressive!!

 

[glynis]

@Steve, @David

My tinnitus is severe in both ears, like 8 or 10 out of ten but with a Meniere's attack it goes blasting and too much to cope with for anyone.

I have to take Cinnarizine 15mg, two tabs three times a day and it brings my tinnitus back down to what I can cope with even though it's still severe.

Could that medication help others whom don't have Meniere's as it does state it reduces tinnitus?

If you get a chance to ask anyone at the expo that would be lovely.

love glynis

 

[Hazel]

Hi everyone,

We didn't collect many questions yet from you guys for our planned interviews during the BTA Conference (14 September) and Talking Tinnitus Expo (15 September). We can't imagine that you would really want to pass on this opportunity to pose your most burning questions to some of the most pre-eminent researchers and advocates in the tinnitus field! But we only have a few days left to the event, so we need your input by this Wednesday (12 September) at the latest.

When you suggest a question, please indicate the name of the speaker that your question is directed at.

You can find the full programme for both events, with speakers, above in Steve's post.
But to make it extra easy for you, I created a table below with the speakers that you will likely find most interesting, some background details on them, and the topics of their presentations.

Cheers,
Hazel

See list of ESIT projects here: https://esit.tinnitusresearch.net/index.php/research-projects

 

[Manny]

No plans to stream. I've written a post which covers the meaty bits of this talk - and I REALLY want to post it!

However we need the article on which it's based to be published in an academic journal (as they're the audience who need to read it) first, so that me publishing the gist elsewhere doesn't prejudice the article publication.

So sorry, bit of a wait until I can publish it but sure people will be reporting back on Dave's talk.

I think a lot of us on this site are interested in Dave's talk. Would it be possible for someone attending the expo to record the talk using a phone or a voice recorder and post it on Tinnitus Talk for download, or on YouTube? After the journal article is published, if necessary.

(Barring any unforeseen circumstances, I would volunteer to transcribe the talk on behalf of our members who are hard of hearing.)

@David @glynis @Markku @Hazel @Steve
(tagging you because you plan on attending )

Either way, thank you!

 

[Contrast]

1: Would curing sensorineural hearing loss reduce tinnitus if the tinnitus was caused by sensorineural hearing loss?

2: Have they made progress investigating what role GABA has to play in tinnitus patients and if increasing GABA helps?

3: Is there evidence yet of tinnitus having a gateway mechanism, why some individuals with SNHL get tinnitus and others don't?

4: With hearing loss and related problems like tinnitus and painful hyperacusis being common among soldiers, veterans and even the general population how can we get the Governments to show an interest in biomedical research to treat these conditions?

5: Do ENT's do a disservice by ignoring hidden hearing loss and keeping the public ignorant about the condition they suffer from?

6: Is hyperactivity in the DCN or other regions of the brain after hearing loss physical evidence of tinnitus or is this just a speculative hypothesis?

7: How do we get more funding for biomedical research to get sufferers real help, instead of most budget money going towards CBT, TRT type therapies that aren't curative in the long run?

8: Is hyperacusis with pain and hyperacusis with loudness amplification two separate conditions or subtypes of the same condition? I have read hypothesis that suggest this. They seem to have totally different properties. I have heard researchers use words like noxacusis to refer to painful hyperacusis, and recruitment to refer to loudness amplification. Hyperacusis with pain is a horrifying condition and it's mechanisms need to be understood in order of a treatment.

9: How can we get tinnitus research to cross discipline with hearing loss research, other phantom sensory conditions, and even issues like TMD that all show evidence of being related?

10: Can we soon have YouTube videos that show 3D models of the auditory brain and inner ear that explain the known mechanisms of tinnitus and painful hyperacusis so the public can be informed of their own condition, put in laymen's terms and simplified.

I am hoping for real discussion happening about these topics that could lead to novel treatments 10 years from now.

Type II afferent cochlear nerve's, and outer hair cells and there role in painful hyperacusis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4664349/

Central Gain hypothesis already showing evidence in tinnitus and possibly hyperacusis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208401/

 

[Wolfears]

I feel like lot of these guys are still trying to understand the exact mechanism of tinnitus, but this is probably a very long road full of dead ends.

Can you ask them if they could take a different approach (a shortcut of sorts) and try to simply map out which part of brain is causing and sustaining tinnitus and then simply burn it out with laser via precision strike?

This way tinnitus would be eliminated regardless of the cause.

Thank you...

 

[hoper]

@David,

Hello,

I can remember a video from the BTA homepage.

In the video Roland Schaette said "I am pretty sure we have an effective treatment in the next decade''

He meant 2020-2030.

How about that? Will it be true?

 

[Duncan L]

I would be really interested in hearing (pardon the pun) if any research is looking at the link between tinnitus and autoimmune disease/s.

I have a strong but completely unscientific suspicion that the two are inextricably linked. Thank you.

 

[Red]

Mr. Dave Carr: Can a treatment or cure for tinnitus aid in the recovery of painful hyperacusis?

 

[Markku]

When you are posting interview question suggestions, please indicate the person your question is directed at.

@Hazel put together a fantastic list of the most interesting speakers; the list also includes their specialties etc.

» Hazel's list

 

[Hazel]

1: Would curing sensorineural hearing loss reduce tinnitus if the tinnitus was caused by sensorineural hearing loss?

2: Have they made progress investigating what role GABA has to play in tinnitus patients and if increasing GABA helps?

3: Is there evidence yet of tinnitus having a gateway mechanism, why some individuals with SNHL get tinnitus and others don't?

4: With hearing loss and related problems like tinnitus and painful hyperacusis being common among soldiers, veterans and even the general population how can we get the Governments to show an interest in biomedical research to treat these conditions?

5: Do ENT's do a disservice by ignoring hidden hearing loss and keeping the public ignorant about the condition they suffer from?

6: Is hyperactivity in the DCN or other regions of the brain after hearing loss physical evidence of tinnitus or is this just a speculative hypothesis?

7: How do we get more funding for biomedical research to get sufferers real help, instead of most budget money going towards CBT, TRT type therapies that aren't curative in the long run?

8: Is hyperacusis with pain and hyperacusis with loudness amplification two separate conditions or subtypes of the same condition? I have read hypothesis that suggest this. They seem to have totally different properties. I have heard researchers use words like noxacusis to refer to painful hyperacusis, and recruitment to refer to loudness amplification. Hyperacusis with pain is a horrifying condition and it's mechanisms need to be understood in order of a treatment.

9: How can we get tinnitus research to cross discipline with hearing loss research, other phantom sensory conditions, and even issues like TMD that all show evidence of being related?

10: Can we soon have YouTube videos that show 3D models of the auditory brain and inner ear that explain the known mechanisms of tinnitus and painful hyperacusis so the public can be informed of their own condition, put in laymen's terms and simplified.


I am hoping for real discussion happening about these topics that could lead to novel treatments 10 years from now.

Type II afferent cochlear nerve's, and outer hair cells and there role in painful hyperacusis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4664349/

Central Gain hypothesis already showing evidence in tinnitus and possibly hyperacusis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208401/

Thank you for your quick and extensive reply! I know we can always count on you to come up with thoughtful and serious questions

However, it will be a bit hard for us to figure out who to direct these questions at, since you didn't include any speakers' names. Could you please indicate which question is to be directed at which speaker? Thanks in advance....