Tinnitus Week 2020: Focus on Research — Get Involved!

[Candy]

From BTA's Twitter:

Our petition NEEDS more signatures to make a real difference. We passed the 2,000 mark earlier but we need more! Help us reach as many people as possible by asking others to sign up too. Help us make a real impact!

 

[Ed209]

There is someone sharing Amit Shah's old petition - that we promoted on here years ago - on a large Facebook support group. Unbelievable. The person doing it has even left a comment linking the old petition on a post that is directly promoting the new petition!

The post appears to be from someone linked to the BTA:

 

[OnceUponaTime]

Just a few more signatures and we reach the goal.

Please sign the petition and share the link as much as you can.
Only us can make it happen.

Tinnitus hurts.

Don't stay on the sideline. Get involved!

 

[brokensoul]

 

[ajc]

I would like to, but alas I don't have a Twitter.

It takes less than a minute to create a Twitter account. Doesn't need to be created with your real name or main email address.

 

[MrCrybaby]

It takes less than a minute to create a Twitter account. Doesn't need to be created with your real name or main email address.

Very true, I'll give it a shot.

 

[GregCA]

It takes less than a minute to create a Twitter account. Doesn't need to be created with your real name or main email address.

The issue isn't so much about having a Twitter account: as you mention, creating one is pretty easy.

The issue is about having followers: without any followers (the initial state of a new account), your tweet reaches nobody.

The same applies to Facebook.

 

[Nonomat]

I shared the message to the first one (top of the list): the moderator has just accepted my post.

Hi @Frédéric, I might have gotten ahead of myself saying I shared it. I am not part of this group anymore so I sent a PM to one of the moderators notifying them about the petition but apparently it wasn't shared afterwards in the group.

Glad you did it then!

 

[Cape crusader]

Signed and donated.
Please help us all.

 

[Hazel]

OK everyone, not to detract from the petition, but as promised we have a few of our own Tinnitus Week activities around research lined up, and here is the next one:

A unique opportunity to work directly with a tinnitus researcher to help shape his research plans!

Dr. Will Sedley has reached out to us to get YOUR input on his plan for predictive brain processing research. Read all about it here.

 

[Elfin]

It's so hard to get the tinnitus community to help themselves. It's easier to understand why the numbers are so low after reading these comments:

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The absolute state of replies like these.

It's hard to work out whether the original poster is either fortunate to have a tinnitus subtype which diminishes naturally under a placebo, is a charlatan hawking hope for profit or is just deliberating and maliciously undermining the cause.

As has been noted, it's on us to really galvanise and promote and push and make enough clamour and noise that our collective cause becomes unavoidable. Only then will we get the change we desperately need.

Signed, shared and promoted.

 

[Greg Sacramento]

The problem is not about more research being needed. Most causes of tinnitus have been found. There may never be a way to turn off sound permanently for most without fixing the cause.

Number one priority and conference priorities should be to pressure healthcare care givers to find cause for each patient and then treat. With this, conflicts of best interests exist and they intertwine. The fact still remains that caregivers need to spend more investigative time with patients.

Researchers get funding, fees and paychecks for their devoted services, but many have said that it's up to healthcare to use our research and treatments. Many within the tinnitus space or tag on space get reward either thru other contacts, other compensation and compensation with other firms by adding clients to service contracts. There is wheeling and dealing within the tinnitus space with associations to other spaces where reward can be received ---- as in all other systems.

Pressure does needs to be placed on healthcare and they need to be held accountable for responsibility in finding one's cause, but conflict of interest are often too deep and broad.

Tinnitus Talk has many values. Some values are: Condition discussion, personnel experiences - unity and compassion.

 

[GregCA]

Idea: could anyone here tweet this petition at celebrities that are known to have tinnitus and are vocal about the experience (I find many old time rockers are)?

I think this is a good idea. Many celebrities with large following may not even know that this petition exists.
Also, if the celebrity is a musician, I'd expect a part of his/her followers to be affected "more than average" by tinnitus.

A starting point: https://restoredhearing.com/2015/07/01/celebrities-with-tinnitus/ and https://en.wikipedia.org/wiki/List_of_people_with_tinnitus

I personally think the chances of celebs paying attention to someone tagging them would increase if the tagging entity "looks serious", like Tinnitus Hub or actually the BTA, rather than a random internet user.

@Markku what do you think?

 

[GregCA]

I sent a message to France Acouphenes too, warning them about the existence of this petition. By the way, I also asked them what happened to their old petition (in French only): did they send it to the French Health Minister? In that case, what was the answer of this Minister?

What was the response? They had 45K supporters!

 

[Hazel]

The problem is not about more research being needed. Most causes of tinnitus have been found. There may never be a way to turn off sound permanently for most without fixing the cause.

There is a difference though between knowing the causes and understanding how to fix them. The fixes are only available for certain sub-types. And we don't even know enough yet about what the sub-types are. So I do believe a lot more research is needed. But that's just my two cents.

Number one priority and conference priorities should be to pressure healthcare care givers to find cause for each patient and then treat. With this, conflicts of best interests exist and they intertwine. The fact still remains that caregivers need to spend more investigative time with patients.

Researchers get funding, fees and paychecks for their devoted services, but many have said that it's up to healthcare to use our research and treatments. Many within the tinnitus space or tag on space get reward either thru other contacts, other compensation and compensation with other firms by adding clients to service contracts. There is wheeling and dealing within the tinnitus space with associations to other spaces where reward can be received ---- as in all other systems.

Pressure does needs to be placed on healthcare and they need to be held accountable for responsibility in finding one's cause, but conflict of interest are often too deep and broad.

The healthcare side is certainly very important. Education of GPs, ENTs, etc. But to me that does not detract from the importance of research per se.

You make a good point about the lack of 'translation' between research and healthcare, though I wouldn't put the onus entirely on the healthcare side here. There's a lot of research going on without much regard for practical implementation. So it should be a two-way street; much room for improvement there.

innitus Talk has many values. Some values are: Condition discussion, personnel experiences - unity and compassion.

Couldn't agree more
Hopefully even more unity and compassion going forward!

 

[Candy]

Someone told me on Facebook that there can be 200 reasons of tinnitus - I replied that it would be limited to the ear / brain, whatever ear triggered it. I do believe there is the perception that it's such an unsolvable condition hence not to bother.

People are pursuing the most bizarre things. Sometimes I think ignorance is bliss

 

[Hazel]

More for Tinnitus Week from our TRI 2019 video interview series:

An interview with Dr. Dirk de Ridder!

 

[valeri]

Signed and shared even though I have my opinion on BTA and their "honest" intention to help us

 

[Frédéric]

@Candy, @Hazel and everyone.

Just to inform you that there is on the France Acouphènes website a standard letter to send to one's deputy. I sent it to my deputy yesterday, but no reply so far.

https://www.france-acouphenes.org/index.php/aider/modele-de-lettre-a-votre-depute

French folks, if you want to do the same...

 

[Frédéric]

There is someone sharing Amit Shah's old petition - that we promoted on here years ago - on a large Facebook support group. Unbelievable. The person doing it has even left a comment linking the old petition on a post that is directly promoting the new petition!

The post appears to be from someone linked to the BTA:

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View attachment 35459

It is weird that this petition is still active (I can't manage to find the date of its release). Is it worth signing it? Why not?

At this point, is there a technical possibility for change.org to aggregate all these petitions? Because they share the same goal.

 

[Frédéric]

What was the response? They had 45K supporters!

Good question. Yes 45,000 supporters is quite a lot. I remember I signed it. But for all I know, I did not receive any notifications from Change.org about the progression of this petition, and I also checked www.france-acouphenes.org, there is no report on this.

 

[Frédéric]

@Nonomat @Regal: I managed to publish the link to the petition in the 2nd, 3rd and 5th largest French tinnitus groups on Facebook.

 

[Candy]

No notification either... I got one about free dental treatment for cancer patients which had received over 100,000 signatures.

Tinnitus sufferers are being told there is no cure and they have to accept it. They are all resigned in some of these forums...

How can we get Susanna Reid to share? Twitter won't let me DM her. Anyone savvy?

 

[AVIYT]

How can we get Susanna Reid to share? Twitter won't let me DM her. Anyone savvy?

You can't DM users who don't follow you or have it turned off for privacy reasons. Best chance is tweeting at her and followers of her. I did so.

 

[Candy]

Best chance is tweeting at her and followers of her. I did so.

Did she respond?

 

[brokensoul]

 

[GregCA]

Good question. Yes 45,000 supporters is quite a lot. I remember I signed it. But for all I know, I did not receive any notifications from Change.org about the progression of this petition, and I also checked www.france-acouphenes.org, there is no report on this.

I signed it too, and got no update either. I think that petition was about tinnitus being officially recognized as a disability by the French health system, rather than specifically targeted at a cure.

I'd be curious to know if they answer you.

 

[brokensoul]

If the BTA wants or allows international support, couldn't they collaborate with the ATA to help raise some awareness? I mean William Shatner could surely post a tweet about it, right?

Is there any support from British celebs who have tinnitus? Just a tweet could already make a significant difference in raising awareness.

Peter Gallagher? Pete Townshend? ... ?

Really awesome that some people here are doing a great effort to raise awareness about the petition.

 

[Ed209]

It is weird that this petition is still active (I can't manage to find the date of its release). Is it worth signing it? Why not?

At this point, is there a technical possibility for change.org to aggregate all these petitions? Because they share the same goal.

I signed it back in the day. The problem with other people sharing this petition whilst the BTA's is running is that it's taking signatures away from the more relevant petition. Especially when people are sharing it in the same conversation as the BTA one. Of course, it's best we sign them all as it takes no time to do, but you know what people are like. Getting someone to simply click on a link is hard enough.

A friend texted me this earlier.

This means that it's had national news exposure and we've still only managed 6351 signatures since Monday. I can't help but feel disappointed. If all of the members of one of the support groups that it's been shared with, had signed it, we'd have well over 20,000 signatures. Now imagine if the members of all tinnitus support groups had signed it already, we'd have tens of thousands by now, easily. Add in national press and TV news coverage and it's even more disappointing for me personally.

If signing a petition is too much of a barrier for the tinnitus community, then god help us all. The passion to drive this forward and get results is severely lacking when the community is viewed as a whole. Many have been phenomenal so it's no direct criticism to anyone here. It is what it is, unfortunately, but it demonstrates how difficult of a task it is to get stuff done in the tinnitus world.

 

[Jcb]