Tinnitus Week 2020: Focus on Research — Get Involved!
- Thread starter Tinnitus Talk
- Start date
Member
Director- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Another great interview for Tinnitus Week from our TRI 2019 video interview series:
An interview with Arnaud Noreña!
An interview with Arnaud Noreña!
Sorry, the ATA is too busy posting videos about how life with tinnitus gets better and everything is good.
- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
- -
I have of course signed and donated.
Here is a list of famous people with tinnitus that really need tweeting etc. I have sent this list to the BTA by email. Maybe those more tech savvy on here could tweet the people on the list and send a copy to the BTA and ATA and so on.
Not tweeting/contacting all of the people on this list would be such a wasted opportunity. I would like to hear from the BTA to know how many they have contacted.
UK and Irish
Phillip Schofield (tv presenter)
Susanna Reid (tv presenter)
Seán William McLoughlin (better known as Jacksepticeye, YouTube star – raised millions for charity)
Rodger Taylor (Queen)
Ozzy Osbourne
Pete Townshend
Jamie Laing (UK reality TV star)
Gerard Butler (actor)
Martin Kemp (actor)
Eric Clapton
Phil Collins
Chris Martin (Coldplay)
Bilinda Butcher (band My Bloody Valentine)
Jack Straw (politician, and Will Straw his son)
Jo Whiley (radio presenter)
Igor Bališ (footballer, left football club due to tinnitus)
Joseph Mawle (Games of Thrones)
Derek Mooney
Andrew John Partridge (XTC)
Peter David Robinson (UK politician)
Francis Rossi (Status Quo)
Kevin Patrick Shields (My Bloody Valentine)
KT Tunstall (musician)
US and other
Whoopi Goldberg
Trent Reznor
Neil Young
Will.I.Am
Bob Dylan
Steve Martin
William Shatner
Barbra Streisand
Liza Minnelli
"Joey" Jordison (Slipknot)
Keanu Reeves
David Letterman
Suzanne Vega
Dolly Buster
will.i.am
Neve Campbell
John Densmore (The Doors)
Al Di Meola
Daniel Robert Elfman
Paul Brandon Gilbert (Mr Big)
Jeffery Michael Gordon (US Race driver)
Ayumi Hamasaki (singer)
Kirk Hammett
James Hetfield
Lars Ulrich
Sam Harris
Gary Edward "Garrison" Keillor (author/radio)
Anthony Kiedis (Red Hot Chili Peppers)
Huey lewis
Rush Hudson Limbaugh
Arjen Anthony Lucassen
Steven Lee Lukather (Toto)
Joshua Charles Malina
Moby
Neal Joseph Schon (Journey/Bad English)
Thomas Gerard Tancredo (US politician)
George Alexander Trebek (host Jeopardy)
Ville Valo (HIM)
Charles Joseph Scarborough (US politician / radio)
Thomas Bangalter (Daft Punk)
Here is a list of famous people with tinnitus that really need tweeting etc. I have sent this list to the BTA by email. Maybe those more tech savvy on here could tweet the people on the list and send a copy to the BTA and ATA and so on.
Not tweeting/contacting all of the people on this list would be such a wasted opportunity. I would like to hear from the BTA to know how many they have contacted.
UK and Irish
Phillip Schofield (tv presenter)
Susanna Reid (tv presenter)
Seán William McLoughlin (better known as Jacksepticeye, YouTube star – raised millions for charity)
Rodger Taylor (Queen)
Ozzy Osbourne
Pete Townshend
Jamie Laing (UK reality TV star)
Gerard Butler (actor)
Martin Kemp (actor)
Eric Clapton
Phil Collins
Chris Martin (Coldplay)
Bilinda Butcher (band My Bloody Valentine)
Jack Straw (politician, and Will Straw his son)
Jo Whiley (radio presenter)
Igor Bališ (footballer, left football club due to tinnitus)
Joseph Mawle (Games of Thrones)
Derek Mooney
Andrew John Partridge (XTC)
Peter David Robinson (UK politician)
Francis Rossi (Status Quo)
Kevin Patrick Shields (My Bloody Valentine)
KT Tunstall (musician)
US and other
Whoopi Goldberg
Trent Reznor
Neil Young
Will.I.Am
Bob Dylan
Steve Martin
William Shatner
Barbra Streisand
Liza Minnelli
"Joey" Jordison (Slipknot)
Keanu Reeves
David Letterman
Suzanne Vega
Dolly Buster
will.i.am
Neve Campbell
John Densmore (The Doors)
Al Di Meola
Daniel Robert Elfman
Paul Brandon Gilbert (Mr Big)
Jeffery Michael Gordon (US Race driver)
Ayumi Hamasaki (singer)
Kirk Hammett
James Hetfield
Lars Ulrich
Sam Harris
Gary Edward "Garrison" Keillor (author/radio)
Anthony Kiedis (Red Hot Chili Peppers)
Huey lewis
Rush Hudson Limbaugh
Arjen Anthony Lucassen
Steven Lee Lukather (Toto)
Joshua Charles Malina
Moby
Neal Joseph Schon (Journey/Bad English)
Thomas Gerard Tancredo (US politician)
George Alexander Trebek (host Jeopardy)
Ville Valo (HIM)
Charles Joseph Scarborough (US politician / radio)
Thomas Bangalter (Daft Punk)
One good thing about the petition are the comments. These are not confined to a forum of sufferers - these are people "getting on" with their lives. Yet it clearly shows how tough this all is.
Also habituation isn't mentioned in the petition itself either, we're making progress... print it, show your GP, ENT and tell them that the BTA knows how devastating this can be. They won't be able to fob you off anymore and own up to the fact that there nothing they can do (should they be pushing for more help for their patients?)
Having to fight to convince medical professionals, family etc. that tinnitus is challenging is a burden we could do without (I'm not saying you can't get used to it or habituation can't happen for some).
At least we're all on the same page now, tinnitus is bad, lack of research is bad.
All we wanted was to be acknowledged and for our challenges not to be minimised simply because people with tinnitus make it through or because it has been the status quo for years. The times of suffering behind closed doors and being told it was only you are over as we have the Internet.
Hopefully we can now keep the fight for research alive.
Here's the article in The Times:
Also habituation isn't mentioned in the petition itself either, we're making progress... print it, show your GP, ENT and tell them that the BTA knows how devastating this can be. They won't be able to fob you off anymore and own up to the fact that there nothing they can do (should they be pushing for more help for their patients?)
Having to fight to convince medical professionals, family etc. that tinnitus is challenging is a burden we could do without (I'm not saying you can't get used to it or habituation can't happen for some).
At least we're all on the same page now, tinnitus is bad, lack of research is bad.
All we wanted was to be acknowledged and for our challenges not to be minimised simply because people with tinnitus make it through or because it has been the status quo for years. The times of suffering behind closed doors and being told it was only you are over as we have the Internet.
Hopefully we can now keep the fight for research alive.
Here's the article in The Times:
Attachments
- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Ok folks, we really want to give a big push to THIS PETITION asking the government more funding to tinnitus research, and we need ALL OF YOU to help out!
We just published this video:
Please, please, please share this as widely as you can.
All your friends, family and followers need to know about this!
All you have to do is share this Facebook post and/or this Tweet.
The drawings were done by the wonderful @MrCrybaby (such talent!) and were animated - i.e. brought to life - by the amazing @Autumnly.
We just published this video:
Please, please, please share this as widely as you can.
All your friends, family and followers need to know about this!
All you have to do is share this Facebook post and/or this Tweet.
The drawings were done by the wonderful @MrCrybaby (such talent!) and were animated - i.e. brought to life - by the amazing @Autumnly.
Awesome job by @Autumnly and @MrCrybaby! Thank you both for the time, talent and effort that you both put into this...! 
An additional thanks to @Hazel & @Markku for their contribution and effort as well!
An additional thanks to @Hazel & @Markku for their contribution and effort as well!
- Jun 15, 2019
- 157
- Tinnitus Since
- May 2019
- Cause of Tinnitus
- Likely infection/ear stress after walking pneumonia
Wow I'll say!Awesome job by @Autumnly and @MrCrybaby! Thank you both for the time, talent and effort that you both put into this...!
An additional thanks to @Hazel & @Markku for their contribution and effort as well!
I posted it on my Facebook feed, signed the petition, and will donate. And I'm in the US (as I know many others who have or will participate are).
- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
- -
That article is better than most, but I didn't like the last paragraph where it mentions 'specialist counselling' and CBT.
It would have been better without that paragraph or at least a reworded version of it, i.e. 'Currently the NHS ONLY offers talking therapies to try to help battle the immense distress caused by tinnitus, although in many cases they have little or no success and tinnitus itself is left untreated'.
Or something like that.
I think a lot of GPs and ENTS probably don't see it as their problem, which of coure it isn't: it's ours.
Very well conceived and nicely put together.
I have to say that, this being Tinnitus Week, I have bombarded my Facebook page excessively.
But I will post this a little later in the year.
If you run into overkill it sometimes works against you.
People may well switch off.
Well done guys,
Dave x
Jazzer
I have to say that, this being Tinnitus Week, I have bombarded my Facebook page excessively.
But I will post this a little later in the year.
If you run into overkill it sometimes works against you.
People may well switch off.
Well done guys,
Dave x
Jazzer
brokensoul
Member
- Dec 31, 2019
- 223
- Tinnitus Since
- 02/05/2019
- Cause of Tinnitus
- unknown:medication,cannabis,stress,sleep deprivation
10,000 plus signatures so far but we need more!
Please, sign the petition and share the link.
https://www.change.org/p/matthew-hancock-mp-commit-more-funding-to-tinnitus-research
Please, sign the petition and share the link.
https://www.change.org/p/matthew-hancock-mp-commit-more-funding-to-tinnitus-research
bobvann
Member
It's interesting that a lot of them are able to carry on playing music... If I try to drum, oh man!
- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Hi all,
We've been talking about getting more funding for research. But we're also thinking ahead to how we – the tinnitus community – can influence how that funding is allocated. We want people with tinnitus to be directly involved in setting research priorities, designing studies and carrying them out.
This is called Citizen Science, and Tinnitus Hub is actively advocating for it within the tinnitus research field. One of the researchers who stands with us on this is Deb Hall.
READ HER ACCOUNT of why we need more Citizen Science in tinnitus research in our latest blog post, another Tinnitus Week special!
In her blog post, Deb refers extensively to the COMiT'ID study, which we were a part of. The latest paper published as part of this project was co-authored by our very own amazing @Markku: https://www.i-jmr.org/2020/1/e14446/
Cheers,
Hazel
- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Hey there, are you guys tired of our content and initiatives yet? 
Here's another initiative, part of a long-term project we're launching to get more of a say in research:
Please vote on your favourite research papers now!
Here's another initiative, part of a long-term project we're launching to get more of a say in research:
Please vote on your favourite research papers now!
- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
- -
How long will the petition run for before the BTA (or whomever) approaches the government about funding?
We have 11,000 plus now, but that is still a drop in the ocean really. Any less than 50,000 will be looked down upon, and really we need 100,000+. Wishful thinking maybe.
We have 11,000 plus now, but that is still a drop in the ocean really. Any less than 50,000 will be looked down upon, and really we need 100,000+. Wishful thinking maybe.
- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
This reminds me how much work doing all these interviews was, hopefully you like them! Next up from our TRI 2019 video interview series:
An interview with Inge Stegeman!
An interview with Inge Stegeman!
I find it very strange that all week long we have been pressing for more funding towards a cure and then Action on Hearing Loss NI posts a video saying 93% of people with tinnitus are not bothered by tinnitus after habituation.
ajc
Member
- Feb 6, 2018
- 1,170
- Tinnitus Since
- 11/2002; spike 2009; worse 2017-18
- Cause of Tinnitus
- Loud music - noise damage
- May 9, 2017
- 929
- Tinnitus Since
- 2013
- Cause of Tinnitus
- Noise-induced
Would be awesome if more people left comments letting Action on Hearing Loss and the ATA know they don't agree with the information they shared in those videos.
I've commented on their post on Twitter. I feel like this is a week where sufferers feel united and feel like there is some actual progress being made and then a silly post like that just puts a massive downer for those who really struggle and can't habituate.
bobvann
Member
Like my old community says nothing works & everyone just habituates no matter what... Righhhht...
- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Hi everyone,
So we come to the end of Tinnitus Week already. BTA's petition for more research funding was certainly at the core of things this week, and a worthwhile cause if you ask me. The counter is at 13,000+ signatures. To be honest, I don't know what will happen with the petition now, but I will try to get some info from BTA and keep you updated. Any further discussions on that topic should move to this thread.
On behalf of Tinnitus Hub, I also want to say that we agree some of the awareness messages sent out by other organisations were counter-productive. There is nothing wrong in principle with publishing success story videos or pointing out that most people habituate. Those kinds of messages can be useful in a certain context, particularly when it comes to support for new sufferers who are anxious. BUT... at a time when we are trying to convince policymakers that more research and effective treatments are sorely needed, what we really need is to drive home the suffering of those who can't habituate. Which is what we tried to do with our video. In that sense, I am happy to see BTA apparently moving in this direction, and I think their political lobbying work is the way forward for all organisations who represent tinnitus sufferers.
Personally, and to end on a positive note, we are quite proud of what we managed to pull off during this week. See post #1 of this thread; we managed to do most of those things! We want to particularly thank @MrCrybaby and @Autumnly for their contributions. A big thank you of course to @jimH for raising funds to get us TRI in Vancouver. And a special thank you to Deb Hall and @Will Sedley, two tinnitus researchers who reached out to us in order to engage directly with this community. You can read Deb's blog post here, and get involved with Will's work here.
As just a couple of volunteers who care about people suffering with tinnitus and with almost no budget, we are proud of what we accomplished. And proud of this community pulling together like it has. And it's really just the beginning, because we have a lot planned for 2020 when it comes to involving this community in research and steering research in the right direction!
All the best,
Hazel & Markku
So we come to the end of Tinnitus Week already. BTA's petition for more research funding was certainly at the core of things this week, and a worthwhile cause if you ask me. The counter is at 13,000+ signatures. To be honest, I don't know what will happen with the petition now, but I will try to get some info from BTA and keep you updated. Any further discussions on that topic should move to this thread.
On behalf of Tinnitus Hub, I also want to say that we agree some of the awareness messages sent out by other organisations were counter-productive. There is nothing wrong in principle with publishing success story videos or pointing out that most people habituate. Those kinds of messages can be useful in a certain context, particularly when it comes to support for new sufferers who are anxious. BUT... at a time when we are trying to convince policymakers that more research and effective treatments are sorely needed, what we really need is to drive home the suffering of those who can't habituate. Which is what we tried to do with our video. In that sense, I am happy to see BTA apparently moving in this direction, and I think their political lobbying work is the way forward for all organisations who represent tinnitus sufferers.
Personally, and to end on a positive note, we are quite proud of what we managed to pull off during this week. See post #1 of this thread; we managed to do most of those things! We want to particularly thank @MrCrybaby and @Autumnly for their contributions. A big thank you of course to @jimH for raising funds to get us TRI in Vancouver. And a special thank you to Deb Hall and @Will Sedley, two tinnitus researchers who reached out to us in order to engage directly with this community. You can read Deb's blog post here, and get involved with Will's work here.
As just a couple of volunteers who care about people suffering with tinnitus and with almost no budget, we are proud of what we accomplished. And proud of this community pulling together like it has. And it's really just the beginning, because we have a lot planned for 2020 when it comes to involving this community in research and steering research in the right direction!
All the best,
Hazel & Markku
Over the years it has become crystal clear that tinnitus organisations are not on the same page as sufferers and it's not in their interest to find cure.
My question is: why can't Tinnitus Hub or Tinnitus Talk become our representative on whatever level is required to push other useless parasites out of the game?
My question is: why can't Tinnitus Hub or Tinnitus Talk become our representative on whatever level is required to push other useless parasites out of the game?
Jamie Laing has come through for us. Read the Daily Mail Health section!
https://www.dailymail.co.uk/health/...a-star-JAMIE-LAING-tells-struck-tinnitus.html
Now there are loads of comments from mild sufferers that talk about it not being big deal and to stick a fan at night... clueless people with probably mild tinnitus.
@Hazel and @Markku can we please tank him on Twitter?
https://www.dailymail.co.uk/health/...a-star-JAMIE-LAING-tells-struck-tinnitus.html
Now there are loads of comments from mild sufferers that talk about it not being big deal and to stick a fan at night... clueless people with probably mild tinnitus.
@Hazel and @Markku can we please tank him on Twitter?
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