Tinnitus Week 2020: Focus on Research — Get Involved!

[BBakkers]

Just shared the petition with my football team, my friends via Whatsapp, Facebook, my family and even my WoW guild (normally would have never shared that)! Come on guys, get your butts moving and share this thing with everyone! Let's create some "buzz" around this petition!

I want to get rid or have a reduction of this thing in my head within some years!!!

 

[Ed209]

I just shared it on two of the largest Facebook support groups with a combined membership of 38,000 people (obviously not accounting for any overlap).

It's doing well, but personally, I'd like to see much higher numbers. This has now had national exposure via ITV News, The Times, The Daily Mail, and probably BBC News as well. It has also been seen by all active users here at Tinnitus Talk (and the Tinnitus Hub Facebook and Twitter page) and the BTA members have also seen it.

It's been shared by members here on various different support groups across different countries. This has surely been exposed to well in excess of 100,000 tinnitus sufferers and beyond by now, and it takes less than a minute to sign it. I cannot comprehend how we haven't even got 1500 signatures yet, in 4 days. Don't get me wrong, I'm really glad we have those signatures, but what the hell is everyone else doing! I wish that all tinnitus sufferers would just sign the damn thing already!

 

[brokensoul]

It's great to create attention for tinnitus and I hope the petition gets 10,000+ signatures at least. I highly support this initiative by the BTA.

Looking at that Daily Mail article however, it seems to me that tinnitus associations are still not fully in synch with those who have the condition. There are some great points in there and that is very positive, but...

"Currently there are few treatments, with doctors generally only able to recommend hearing aids, recorded sounds or counselling and relaxation techniques, which do not work for everyone."

No, there are no treatments. The BTA needs to say so, there would be a lot more support from other people who don't have or understand this condition.

"David Stockdale, of the BTA, said: 'It is a travesty that tinnitus, with its huge mental health impact, receives 40 times less funding than comparable conditions like depression or hearing loss."

Comparable conditions like depression?

"Tinnitus most affects people aged 55 to 75."

It's really not helpful to say it's mostly an old people's thing. Would be more powerful to say that more and more very young people are suffering from this condition and to subsequently warn people.

"It can be triggered by normal hearing loss caused by ageing or from loud noise, which is why music stars are vulnerable. It can also affect people following car accidents or head injuries."

I find it disturbing that medication is never mentioned. It is one of the main causes and somehow it is never or very rarely mentioned.

If the BTA could get some of these points right, the message would be more powerful. Details matter.

 

[brokensoul]

I just shared it on two of the largest Facebook support groups with a combined membership of 38,000 people (obviously not accounting for any overlap).

It's doing well, but personally, I'd like to see much higher numbers. This has now had national exposure via ITV News, The Times, The Daily Mail, and probably BBC News as well. It has also been seen by all active users here at Tinnitus Talk (and the Tinnitus Hub Facebook and Twitter page) and the BTA members have also seen it.

It's been shared by members here on various different support groups across different countries. This has surely been exposed to well in excess of 100,000 tinnitus sufferers and beyond by now, and it takes less than a minute to sign it. I cannot comprehend how we haven't even got 1500 signatures yet, in 4 days. Don't get me wrong, I'm really glad we have those signatures, but what the hell is everyone else doing! I wish that all tinnitus sufferers would just sign the damn thing already!

I'm not getting my hopes up. It's only a minority that cares and makes an effort. Lots of sufferers are probably not even aware of this campaign. We still need to try though.

How long is the petition going to run? Is it one week, a month or longer? Does anyone know?

@Markku, did you send out a mail to all members of Tinnitus Talk?

 

[OnceUponaTime]

I shared it on my Facebook.

 

[Candy]

It feels like a missed opportunity if we don't get those numbers up...

 

[MrCrybaby]

Signed! If you aren't jazzed about having your name up you can simply tick a box that keeps it hidden. No excuses!

 

[TheDanishGirl]

Can we somehow slide in the word cancer in this petition? Call it tinnitus cancer?

If something has the word cancer, people are tripping over each other to be first in line to sign.

(no disrespect to cancer patients - just stating the truth)

 

[Pink Noise]

Signed and I donated some money.

Same here.

 

[ajc]

Can someone kindly explain to me why does Change.org ask me to pay after signing the petition?

It tells me 164 people have paid to promote the petition... I added it together and that's over $2000!!!

Does all that money go into lining Change.org's deep pockets or do they really promote it somehow...? I'm not seeing results!!! Barely 1500 signatures...

 

[GoatSheep]

Can someone kindly explain to me why does Change.org ask me to pay after signing the petition?

It tells me 164 people have paid to promote the petition... I added it together and that's over $2000!!!

Does all that money go into lining Change.org's deep pockets or do they really promote it somehow...? I'm not seeing results!!! Barely 1500 signatures...

https://help.change.org/s/article/Promoted-Petitions-FAQs?language=en_US

 

[valeri]

It's great to create attention for tinnitus and I hope the petition gets 10,000+ signatures at least. I highly support this initiative by the BTA.

Looking at that Daily Mail article however, it seems to me that tinnitus associations are still not fully in synch with those who have the condition. There are some great points in there and that is very positive, but...

"Currently there are few treatments, with doctors generally only able to recommend hearing aids, recorded sounds or counselling and relaxation techniques, which do not work for everyone."

No, there are no treatments. The BTA needs to say so, there would be a lot more support from other people who don't have or understand this condition.

"David Stockdale, of the BTA, said: 'It is a travesty that tinnitus, with its huge mental health impact, receives 40 times less funding than comparable conditions like depression or hearing loss."

Comparable conditions like depression?

"Tinnitus most affects people aged 55 to 75."

It's really not helpful to say it's mostly an old people's thing. Would be more powerful to say that more and more very young people are suffering from this condition and to subsequently warn people.

"It can be triggered by normal hearing loss caused by ageing or from loud noise, which is why music stars are vulnerable. It can also affect people following car accidents or head injuries."

I find it disturbing that medication is never mentioned. It is one of the main causes and somehow it is never or very rarely mentioned.

If the BTA could get some of these points right, the message would be more powerful. Details matter.

For as long as they continue to tiptoe and not take this seriously nobody will think this is more than a minor nuisance!

 

[brokensoul]

For as long as they continue to tiptoe and not take this seriously nobody will think this is more than a minor nuisance!

There's improvement though, they didn't mention habituation.

Sweet sweet progress.

 

[Star64]

It feels like a missed opportunity if we don't get those numbers up...

Agree Candy, we need to keep up the momentum, everybody make sure you sign the petition and inform others.

 

[Yuuls]

Signed and shared on Twitter.

 

[Defiant-Decay]

Signed bebe.

 

[Ed209]

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:

It's more of the same, unfortunately. These are the kind of comments I've seen in other campaigns and it's really quite infuriating.

My guess, based on some broad stats and previous experience, is that fewer than 1% have signed it so far. This is the reality we face when dealing with tinnitus. It's so difficult to get anyone to do anything and it seems that even signing a petition is too much to ask for a lot of people.

What really amazes me is that the vast majority of these people will continue to complain about the lack of treatments - all over the internet - which takes a lot more time than signing this petition! It's so crazy that I just cannot get my head around it.

There are likely more than 2,000 people browsing MPP alone, for example, and yet that's all we can muster - in terms of signatures - from across the entire internet in 5 days? It's not good enough.

I really hope this picks up as a low turnout doesn't exactly send out a great message to the two MPs who are involved with this and the U.K. government as a whole. It will give the impression that there's not much demand for a cure.

 

[Barbara777]

My guess, based on some broad stats and previous experience, is that fewer than 1% have signed it so far. This is the reality we face when dealing with tinnitus. It's so difficult to get anyone to do anything and it seems that even signing a petition is too much to ask for a lot of people.

1% or less is who are really bothered by their tinnitus... the rest don't care.

You would think the Daily Mail article alone would have brought thousands of signatures if tinnitus is as widespread as claimed?

 

[Ed209]

1% or less is who is really bothered by their tinnitus... the rest don't care.

You would think the Daily Mail article alone would have brought thousands of signatures if tinnitus is as widespread as claimed?

I've noticed that the participation rate is usually around 1% or less no matter what the campaign is. We need a home run on this as I fear a low turnout could actually work against us considering the reach this has had.

I'm hoping there's going to be a surge of signatures at some point that will kick start a chain reaction into the higher numbers that we need. If that doesn't start soon, though, then it's likely that we've already seen the surge which is depressing.

 

[Candy]

Yes annoying that the Daily Mail article was in the Science section...

It would have normally been in Health.

 

[Nonomat]

Again the petition hasn't been around for 5 days per se. Sure it was created around that time but the BTA only started to promote it yesterday, kicking off Tinnitus Week. Same thing on Tinnitus Talk, the hard promotion started yesterday.

1700 in one day isn't a bad number, far from it. These kinds of petitions take time.

 

[Ed209]

Again the petition hasn't been around for 5 days per se. Sure it was created around that time but the BTA only started to promote it yesterday, kicking off Tinnitus Week. The same thing on Tinnitus Talk, the hard promotion started yesterday.

1700 in one day isn't a bad number, far from it. These kinds of petitions take time.

It's been on this thread since Saturday. I understand what you're saying, though, but the number is still way too low after the exposure it's now had, in my opinion. These things need to explode immediately otherwise they fizzle out and that's why I wanted to see a large number yesterday as an early indicator of what may be possible. Unfortunately, the signature to exposure ratio wasn't great and there's no getting around that from my perspective. The tinnitus community needs to do more.

Have a read of this:

Online petitions need to attract large numbers of signatures on their first day if they are to stand any chance of success, researchers have said.

In a forthcoming book, a research team from Oxford University will show that 99.9% of e-petitions fail to reach the 100,000 signatures needed to trigger the prospect of a Commons debate.

Nearly all e-petitions are doomed to become "digital dust", they write.

"After 24 hours, a petition's fate is virtually set," the team concludes.

Prof Helen Margetts, the director of the Oxford Internet Institute at the University of Oxford, collaborated with a computer scientist and a physicist to analyse the vast amounts of data produced by e-petitioners.

'Attention decay'

The team has deployed automated scripts since 2009 to access the current e-petition site hourly, and its predecessor daily, logging the number of signatories associated with each petition at each visit.

The number of signatures accruing to each petition on the current site during the first 3,000 hours, or just over four months, after the moment it was submitted is plotted on the graph below (note the logarithmic scale on the vertical axis, which compresses higher numbers).

Three examples of petitions on the same subject have been highlighted to help illustrate the data.

Few e-petitions soar above tens of thousands of signatures (those depicted in yellow), while most languish in the doldrums (the dark mass of lines at the bottom of the graph).

"Any petition receiving 100,000 signatures after three months had obtained an average of 3,000 within the first 10 hours," the researchers write, in a chapter of a forthcoming book entitled Big Data and Collective Action.

The difficulty for budding campaigners, they explain, is that "collective attention decays very fast indeed".

Successful petitions are likely to have been launched, or at least bolstered, by extroverts with "larger than average online social networks", they suggest.

The top badger petition was submitted by Queen guitarist and animal rights campaigner Brian May.

If an e-petition gets 100,000 signatures, a parliamentary committee will consider whether it merits a Commons debate.

The committee is not obliged to provide debating time, but nearly all of the petitions which have so far reached this threshold have either been woven into a previously arranged Commons debate or been the subject of their own debate.

In September 2012, Commons Leader Andrew Lansley announced that all petitions surpassing a new threshold of 10,000 signatures would elicit a written response from the government.

Pop music

But the researchers found that just 0.7% of e-petitions reach even this lower threshold.

"Such a high failure rate illustrates... the low costs for initiating a petition," they said.

Once initiated, the fate of an e-petition might hinge on "how potential signatories... view the petition's likelihood of success", they continue.

"Some people will participate when very few other people have participated, some people will only participate when there are large numbers of other participants, and most people are somewhere in between."

The team liken the e-petitions system, where "people are more likely to sign up for those petitions with the highest numbers of other signatories" with "cultural markets, where people are more likely to prefer songs that large numbers of other people like".

The current e-petition scheme's predecessor, launched under the last Labour government, had a much lower threshold to prompt an official response.

Still, "94% failed to obtain even the modest 500 signatures required", the researchers write.

Further research is needed to determine how news of petitions spreads on social networking sites and what impact mentions in mainstream media have on the fate of a petition, they believe.

https://www.bbc.co.uk/news/uk-politics-23441223

Yesterday, I was hoping for an explosive start out of the gate and was disappointed in what we got. Using a conservative 60 hours, we couldn't even get to 2000 signatures. The golden ratio, it seems, for hitting 100,000 signatures is to acquire circa 3000 within 10 hours.

I really hope today is different.

 

[Ed209]

So apparently, it was on ITV's regional news across the UK yesterday as confirmed by the BTA.

 

[MrCrybaby]

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)?

If we could even get one big name to share it that could make a significant difference. I would like to, but alas I don't have a Twitter.

 

[Frédéric]

@Nonomat @Regal: Hi guys!

I signed this petition.

Nonomat: It is funny, without knowing that you already did it, 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?

About this new BTA petition and about Facebook groups, below is a screenshot about French tinnitus groups (yes 5 groups! French people are not disciplined):

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

Nonomat, Regal: which groups did you reach?

 

[Hazel]

Many have asked whether they can/should sign the petition if they're not from the UK.

I checked with BTA and they said that anyone can sign and should sign. It's a great way to show that tinnitus is a global issue. Of course, it's hard to predict how much weight the non-UK signatures will hold, but that shouldn't stop anyone from signing, which takes literally 20 seconds.

If you do live the UK though, there's more you can do, specifically writing to your MP. Please all UK residents do this!!!

 

[Jcb]

Still not at the goal but it is climbing up there...

It needs another push. I've asked family and friends to sign and share on their social networks as well.

 

[Frédéric]

@Hazel & @Markku

Just out of curiosity who is Megan Gill? What is her username on Tinnitus Talk?

 

[TheDanishGirl]

Can you sign for other people, if they are not capable of signing themselves? I think my grandparents would like to sign, but they are very old and can't use a computer.

 

[Autumnly]

If you know someone on Instagram or Twitter that has tinnitus, link the petition in the comments, e.g. JackSepticEye. They themselves might not see it but their fans might sign it. (But don't post it too often or you get marked as a spam account).