Tinnitus Week 2019 — Our Plans

[Hazel]

Hey all,

As you might know, Tinnitus Week 2019 is coming up. It's scheduled for 4-10 February.

Partner organisations are us (i.e. Tinnitus Hub), The British and American Tinnitus Associations, and the Tinnitus Research Initiative. Each organisation will have its own campaign around Tinnitus Week, but we'll also share each other's content on social media and such. The theme of this year's Tinnitus Week will be "Isolation." Check out the Tinnitus Week website for more information on what each organisation has planned.

This thread is intended to keep you up-to-date on our plans for the week, and how you can help.

Our Plan

We will use the outcomes of a survey we conducted last year during Tinnitus Week to spread awareness about the social impact of tinnitus.

On each of the seven days, we plan to distribute a nugget of data like: "1 in 4 tinnitus patients experience a lack of social support when struggling with their tinnitus." Each day's nugget will have its own post on the Tinnitus Hub website, to which we can link from social media. The idea is to generate more debate around the (potentially severe) social impact of tinnitus in its various forms.

We will supplement the above with some content submitted to us by several members, who have expressed their thoughts, feelings and experiences on how tinnitus has impacted them. However, even though we solicited your stories quite a while ago, we only received 2-3 submissions. If you want to make a last-minute submission, please PM me and @Markku as soon as possible!

How Can You Help?

Before Tinnitus Week, you can:

• Visit the Tinnitus Week website, go to "Become a Supporter" and follow the instructions there.
• Let us know of any influential organisations or individuals we can reach out to and ask to become Supporters of Tinnitus Week.

During Tinnitus Week, you can:

• Follow our social media accounts (Facebook, Twitter) on a daily basis and share our content;
• Visit each of the daily posts on Tinnitus Hub.

The aim ultimately is to make more noise, beyond the confines of this forum, about the widespread and severe impact of tinnitus!

 

[TuxedoCat]

Let us know of any influential organisations or individuals we can reach out to and ask to become Supporters of Tinnitus Week.

In the US could you reach out to some of the Veterans Associations and the AARP? I can try to get a hold of contact information if you want to give it a go. Maybe ATA does but how would anyone know since they say very little? TC

Also, hopefully Dr. Rauschecker and Dr. Tzounopoulos are in the loop. Maybe the Lauer Tinnitus Research Center and anyone else on the list of Worthy Causes?

 

[Hazel]

In the US could you reach out to some of the Veterans Associations and the AARP? I can try to get a hold of contact information if you want to give it a go. Maybe ATA does but how would anyone know since they say very little? TC

Also, hopefully Dr. Rauschecker and Dr. Tzounopoulos are in the loop. Maybe the Lauer Tinnitus Research Center and anyone else on the list of Worthy Causes?

I think we have contact details for the researchers you mention, but not for the Veterans Associations and the AARP. Great if you could try to find a contact person for us there!

 

[PDodge]

I just sent my story to @Markku.

 

[Hazel]

I just sent my story to @Markku.

Thank you so much! It was a bit disappointing how few people were willing to share their stories publicly. Although I can also understand that the exposure might be hard to handle for some. In any case, we really appreciate you putting yourself out there for the cause!

 

[PDodge]

Thank you so much! It was a bit disappointing how few people were willing to share their stories publicly. Although I can also understand that the exposure might be hard to handle for some. In any case, we really appreciate you putting yourself out there for the cause!

No problem. Sorry it was really late even though I'd said I would do it in December! I encourage others to do the same. It took me 15 minutes and I blow at writing.

 

[Markku]

Currently working on the video @Samantha R provided us with.

Wish we had gotten more content like this!

 

[Allan1967]

How about we compile a list of email addresses for drug companies: politicians; TV shows etc and then have a few template emails people can copy and then bombard them?

 

[Starthrower]

I am really looking forward to @Samantha R's video for Tinnitus Week...

 

[Jazzer]

I am really looking forward to @Samantha R's video for Tinnitus Week...

Me too.
Not an easy thing to do - exposing yourself as a sufferer.
After much deliberation, mine is in the pipeline also.

 

[Samantha R]

Me too.
Not an easy thing to do - exposing yourself as a sufferer.
After much deliberation, mine is in the pipeline also.

Good on you Jazzer. I think you have a lot to share and I personally find the way you cope with your sound to be very inspiring. You seem to have nailed meditation and I have used the techniques you have described in your posts for myself. Thank you.

I must say that I don't feel that I'm exposing myself as a sufferer by doing this, rather doing what I can for my cause.
Maybe that's because I don't "suffer" anymore, but I still feel deeply connected to those that do and I truly want to make a difference.
My tinnitus isn't severe, however my life has been profoundly and irreversibly affected by it.
I will never be the same.

 

[Jazzer]

Hi Samantha

Yes mine is severe no question.
Loud and ever present.
I am so pleased that some suggestions from me have helped - that gives me a lovely warm feeling.

I honestly don't think I would have made it through without my meditation.
By hearing (not listening) to T' and then drifting off into a meditational slumber, I have become much more desensitised.
I avoid use of the contentious word 'habituation'
(....oh SHIT....I just said it....!!) because the MPP posse will come after me and cut my nuts off!
(I've grown rather attached to them over the years.)
Perhaps the word 'acclimatised' will help me avoid a sticky end.
(I mean - who wants a sticky end misus?!)

I have a theory that there is actually a resistance to acceptance.
A resistance to healing - in effect.
Tinnitus is so horrible that the very idea of acceptance is understandably repugnant.
I mean "accept Tinnitus - WHAT ! - fuck that !!"
( Oh sorry vicar.)
We don't want to accept it!
Accept it - NEVER!

But you see - it is there - like it or not.
We just have to get used to it - that's all.
We have no choice.
That is exactly the point where meditation can come to the rescue.
Bit like General Custard - and the Sixth Cavalry.
The fact of the matter is,
I am honestly doing better!
There - I've said it.
No - this is not just a flash/flush in the pan.
Doing better folks.

Love to everybody
(feeling expansive now)
Dave x
Jazzer

 

[TuxedoCat]

How about we compile a list of email addresses for drug companies: politicians; TV shows etc and then have a few template emails people can copy and then bombard them?

My thoughts.

Since Tinnitus Week begins tomorrow, time will be too short to pull anything really extensive together.

In the US, it's the National Institute of Health that funds research and the National Institute on Deafness and Hearing Loss and Other Communication Disorders that advises NIH. I have the acting director's name email for the NIDCD in the US. Is there someone similar in the UK?

The most difficult part will be getting the tinnitus community to act. We can just focus on these 2 for this week and demonstrate to ourselves that it can be done. Then, we can keep collecting names and email addresses of others and plan future waves of emailing.

Small victories can lead to bigger ones.

TC

 

[david c]

Good on you Jazzer. I think you have a lot to share and I personally find the way you cope with your sound to be very inspiring. You seem to have nailed meditation and I have used the techniques you have described in your posts for myself. Thank you.

I must say that I don't feel that I'm exposing myself as a sufferer by doing this, rather doing what I can for my cause.
Maybe that's because I don't "suffer" anymore, but I still feel deeply connected to those that do and I truly want to make a difference.
My tinnitus isn't severe, however my life has been profoundly and irreversibly affected by it.
I will never be the same.

Well done on taking part Samantha R. The message you have to convey - that tinnitus can be life-changing is absolutely the one we should be putting across, not the one that many of the tinnitus charities offer - that it's not such a big deal and can be easily helped with a bit of mindfulness or CBT.

 

[Starthrower]

Remember the British TV news segment:



Hope that link works.

Maybe @David could get Tinnitus Week mentioned on air?

 

[Starthrower]

The most difficult part will be getting the tinnitus community to act.

I forgot how frustrating this can be. But at the same time I have to be thankful for those donations.

 

[TuxedoCat]

then have a few template emails people can copy and then bombard them?

Here is something that can be sent to Judith Cooper, PhD Acting Director of NIDCD, the council that advises the NIH on the need for research funding for tinnitus in the US. All that needs to be done is to cut and paste this into an email and send it to Dr. Judith Cooper at cooperj@nidcd.nih.gov. If desired, the template can be modified by the sender, but the important thing is that it be sent.


Dear Dr. Cooper,

I am writing to request that the National Deafness and other Communication Disorders Advisory Council advise the National Institute of Health that more funding for research to find effective treatments leading to a cure for tinnitus be made available. The importance of this condition and its treatment needs to be fully appreciated by raising awareness in government and the general public.

The first recorded reports of tinnitus date from the era of ancient Egypt, yet thousands of years later there are no effective treatments for the condition. The American Tinnitus Association reports that nearly 20 million Americans are dealing with bothersome tinnitus on a regular basis and nearly two million are struggling with severe, sometimes debilitating tinnitus.

The tinnitus community is desperate for relief, they seek medical help from their primary care physicians and ear, nose and throat specialists only to be told "learn to live with it". Researchers tell us that funding for understanding the basic mechanisms of tinnitus, effective treatments and eventually a cure is woefully inadequate. This needs to change and the suffering needs to stop.

Thank you for your time and attention to consider improving the quality of life of millions of American. The tinnitus community invites you to join us as we become United Against Tinnitus.

Sincerely,

 

[Ed209]

I forgot how frustrating this can be. But at the same time I have to be thankful for those donations.

This is always the problem. Ideas are easily formulated but executing them involves engagement from the community which is always low to non-existent. It's really frustrating but it's just how it is, unfortunately.

 

[Starthrower]

This is always the problem. Ideas are easily formulated but executing them involves engagement from the community which is always low to non-existent. It's really frustrating but it's just how it is, unfortunately.

How do we keep going and not walk away and live our lives? I tried @Ed209. Then I found this site and eventually started getting involved.

Why have other sites been so critical of Tinnitus Talk doing fund drives/raisers? It is not a requirement for members. It is a way to be a part of the community as a whole.

In the past I had personal correspondence with my State Senator Diane Feinstein regarding the passage of a bill in congress for more research funding. It did pass.

 

[TuxedoCat]

How about we compile a list of email addresses for drug companies: politicians; TV shows etc and then have a few template emails people can copy and then bombard them?

Hi Allan,

This is your deal here, let us know what you're thinking so I can help out further. If you have stats for the UK we can either have 2 letters or a single combined letter.

How do we get everyone's attention on this site? Do we need a new thread? How about other sites?

Do you want to target one day when we all send this or is anytime this week OK?

Thanks, TC

 

[Rajin]

Can we contact Will.i.am , Gerald Butler, and other famous people to get involved?

Before I got tinnitus I had never heard the word. I am stll mad about that. I had listened to AM Radio for years. Not once was there a program on about tinnitus.

All they talked about was Trump, Obama... lol

 

[Contrast]

Can we please try to use Tinnitus Week 2019 to get medical practitioners to recognize hidden hearing loss?

That is a major step in the right direction.

 

[Jiri]

Everybody's always talking about politicians. How about this time we get in touch with some of the big youtubers? Like CaseyNeistat, GradeAUnderA, alpha m. etc. There are now Hollywood stars creating content on youtube too. Will Smith, Jack Black (Jablinski Games) is also a rocker so I think he could be interested. When they upload videos they get hundreds of thousands of views within a day or two, and millions later. That'd be a nice way to raise awareness.

 

[Allan1967]

Hi Allan,

This is your deal here, let us know what you're thinking so I can help out further. If you have stats for the UK we can either have 2 letters or a single combined letter.

How do we get everyone's attention on this site? Do we need a new thread? How about other sites?

Do you want to target one day when we all send this or is anytime this week OK?

Thanks, TC

I'm happy to draft a template email; a template Facebook post or a template Tweet. I have a way with words.

In terms of getting people on this site on board... that will have to come from the top I think, but let's coordinate our 'attack' strategically.

Perhaps a place to start is to consider who to reach out to... I think if we have a separate thread to collate these names/organisations contact details and we all chip in and do some digging, then get a definitive list, couple it with some templates then present it to the forum.

What do the Tinnitus Talk Staff Members think?

Have Tinnitus Talk / Tinnitus Hub got a YouTube Channel?

 

[TuxedoCat]

Perhaps a place to start is to consider who to reach out to... I think if we have a separate thread to collate these names/organisations contact details and we all chip in and do some digging, then get a definitive list, couple it with some templates then present it to the forum.

@Allan1967

@Markku @Hazel - Please see Allan's previous posts.

I agree. Can you go ahead and start a separate thread? Let's get some good discussion going and as more people see the thread hopefully they will jump on board.

Tinnitus Week starts tomorrow. Let's see what we can do in conjunction with that, but I really see this as something that never ends until we receive what we need and deserve.

TC

 

[Hazel]

I agree. Can you go ahead and start a separate thread? Let's get some good discussion going and as more people see the thread hopefully they will jump on board.

Tinnitus Week starts tomorrow. Let's see what we can do in conjunction with that, but I really see this as something that never ends until we receive what we need and deserve.

Loving the initiative here, but this needs to be well thought through and coordinated to have any impact at all. Let's develop a strategy together before we do anything. I'll PM you!

 

[David]

Maybe @David could get Tinnitus Week mentioned on air?

We're working on it!

 

[Hazel]

Day 1 social media message went out, with the below nugget, and linked to this blog post!

Let us know what you think

 

[glynis]

@Hazel and @Markku,
Can you put it on Tinnitus Hub Facebook Group please?

 

[Starthrower]

Maybe @David could get Tinnitus Week mentioned on air?

We're working on it!

@David

Day 1 social media message went out, with the below nugget, and linked to this blog post!

Let us know what you think

@Hazel and @Markku you guys have worked many days and hours for this week!!
I think this is very cool!! And very professional.