Tinnitus Sufferers at Risk of Isolation Say Charities | 5 News

Not what I meant, apologies. I was talking in the context of getting stories onto the TV, to do that then, yes, we need people who will be willing to stand (or sit) in front of a camera. There is value in communicating stories through different media such as the written word but I was talking purely in the context of getting stories onto TV, which is what the points raised related to.

I completely agree doing TV, radio or other types of broadcast is hard and agree it is common to feel that way - which is why I believe we should celebrate and thank those who do so, rather than criticise them for doing it.

Agree with your points @Fabrikat - there's a huge limit in how much can be communicated in a 20 second soundbite and you don't know which bit out of those questions answered will be chosen either.

 

THANK YOU Markku!

 

Sorry, but I can't celebrate someone who I feel is hurting our cause. I would rather she would have done nothing at all. I don't buy into the "all awareness is good"... not at all... awareness has the power to both help or hurt a cause and it must be used with caution.... and hurting a cause is worse then doing nothing in my opinion.

 

Nic did make these points, weren't used.

People are there then to tell their own personal story, that's why they are chosen, to give their own, unique experience of living with tinnitus. The questions are asked about what happened to them, and the interest of the interviewer is getting their own personal story, not in second hand accounts unfortunately. It's formulaic but that tends to be how these sort of segments go.

 

Okay, I must admit I hadn't taken that perspective into consideration. I have little knowledge how these things work. But no matter what, somebody is at fault here... the way I see it.

 

I never said that. You can contribute text; that would be awesome but I’m not sure if there’s enough time to implement it for Tinnitus Week. I mentioned the podcast because you were very critical about the girl on channel 5 and I just wanted to give you a platform to talk about it and say all the things you want to hear.

Obviously, this offer extends to anyone I’m not singling people out here, but it does get frustrating when all you ever read is “they should have said this or that” but nobody will say those things when given the opportunity. I think it’s weak to criticise what others say if you’re not prepared to say anything yourself. Personally, I think we should be thanking the girl.

 

No, you see nothing, nor do you know when or how it will be used. We thought it was going to run twice at 5 and 6.30, we only knew it wasn't running at 6.30 when we saw the 6.30 slot and it didn't air. Also didn't know @Steve wasn't interviewed until I asked him this morning! Until I saw the piece I assumed he'd be part of it.

The way these are put together is pretty rapid, a researcher interviewed Nic. Don't think Nic even spoke to Catherine.

Can always do this or reply to the tweet Channel 5 have put out... or both.

 

My earlier comments were simply made in support of @TheDanishGirl but as usual they have been used by @Ed209 to have a go at me. So I will very briefly reply. I need absolutely no lectures from @Ed209 about doing more for tinnitus. Long before he joined Tinnitus Talk I was busy ensuring that the online information about tinnitus from organisations such as the NHS was accurate and reflected tinnitus sufferers experiences and ensuring that these organisations made changes when this was not the case. I did in fact sign the petition he referred to but I very much doubt that I would sign any petition he started himself as I find him rude and insensitive.

 

In my opinion, Isabelle did nothing wrong and I would not criticise her for speaking on TV. I’ve always said that the worst cases should be represented but it has always been a problem finding people who will speak.

I didn’t agree with Samantha Baines’ interview on Sky News, but that’s another thing entirely. I didn’t agree with the way she joked about and the way she talked about Magic Mike instead of getting into the nitty gritty of tinnitus. That is just one report though, so I reserve judgement for how she represents the condition in future.

 

Please explain how I had a go at you? I asked why you never help.

 

@Ed209 As my previous post pointed out the hundreds of hours of time I had spent helping ensure online tinnitus information was accurate and as it was perfectly obvious to any readers of your previous post that you were having a go at me I don't think any more needs to be said.

 

Actually, the numbers aren't small even if we are talking percentages. According to the ATA, the severe/debilitating cases are in the order of 1% of the population. That is a very large percentage for a debilitating condition.

For comparison:
ALS/Lou Gehrig's: 0.01%
Parkinson's: 0.3%
Rheumatoid Arthritis: 0.4%
Cystic Fibrosis: 0.01%
Multiple Sclerosis: 0.3%
...
There are more conditions of course - I didn't mean to rank them in terms of worse/better than tinnitus - just to get a ballpark on where severe tinnitus stands vs more well known conditions, purely from an incidence rate perspective.

To collect this data, I googled for "debilitating diseases" and "debilitating conditions" - and guess which condition never seems to show in the lists? You guessed it!

 

I asked you genuine questions and referred to the fact that you hide behind anonymity, which is true. You’re very sensitive when you’re being criticised aren’t you? You often avoid answering things I present to you and you never reply to PMs. You are not a team player at all.

 

It’s annoying to see that tinnitus doesn’t even make the cut!

 

Quite honestly, I don't think anyone here is criticizing Isobel, it's BTA that are taking the heat. And personally, I would much rather be celebrating the fact that BTA acknowledges what is needed and will continue the search for that. Right now it just seems like excuse after excuse after excuse.

I think contacting the reporter as @Markku suggests is a good idea. I wish BTA were also contacting her as well.

 

When will the community rise up and actually do something!

I’m losing the will to live here.

 

@Ed209 I think it is completely pointless continuing this argument. I made no reference to you at all in my first post on this thread yet you immediately responded by attacking me. I think it will be completely obvious to any impartial observer that you are keen to keep up a rather petty vendetta against me.

 

@David,

Lovely to see Nic Wray on Channel 5 news... Well done Nic x

I think the severe side of tinnitus needs more air time but I know Channel 5 edits the pre-recordings.

love glynis

 

I agree! But I did not attack you, and you always say that! I’ve noticed that you always appear just to criticise everything, but you never offer to help with anything even when asked. You’re a hypocrite.

Anytime any kind of positive campaign is attempted you pop up to immediately dismiss it. You talk about the integrity of others and yet ironically you lie about important things yourself.

The only thing I’ve ever seen you do is sneak around being negative about everything. It gets tiresome.

 

It is frustrating me that this thread has become me explaining how these things tend to work and why the story does fit the narrative people here want it to - I can see how this comes across as making excuses.

You assume we're not contacting the journalist and team that put this together now or in the future. We will do this and seek to build on the link, however we're not going to criticise them for the story they've assembled but try and build trust and a positive relationship so we can do something different next time - ideally focussing on key messages and have the time to communicate these.

 

How about reaching out to all of the big YouTubers? They get millions of views per video and some of them upload on a daily basis. Articles have recently been posted that some of them struggle with something like the burn out syndrome (Burn OUT YouTubers) as they're running out of ideas for new content, yet still under pressure to keep coming with new videos. If we could get at least one of them to present tinnitus in all of its forms that'd be great, wouldn't it?

Perhaps, coming up with something similar to the Ice Bucket challenge would help too. Imagine if it catches fire. We could spread awareness and raise money to fund actual research quickly.

 

Totally agree, in fact there may be scope for future stories that indeed go to the very serious side. Reporters look for news. So, as I'm sitting here thinking of what to say to the reporter, it may be something more along the lines of "you've only just scratched the surface".

 

@Ed209 I have spent hundreds of unpaid hours ensuring accurate online information about tinnitus from the NHS and other organisations and have their email replies to me to prove it.

Regarding your personal attacks on me - readers of this thread will easily see who is pursuing a vendetta here.

 

@Markku, @David

If I sent Ms. Jones a link to the recent podcast with Dr. Rauschecker would it become problematic because he is looking to use higher mammals for research purposes? I know the animal rights activists can be quite assertive in the UK.

 

If you're saying that yourself and others are too afraid to be recorded or filmed, why are you complaining that the most severe sufferers aren't being featured in the video? Somewhat of a paradox...

 

Wouldn't have thought so. Just be clear on why you're sharing it and what you'd hope for as an outcome.

 

This clip was informative and did bring to light the severity of tinnitus. It is just something that is hard to get across to people who have never heard of tinnitus or have a simple mild sound in their brain.

An interview that is not prerecorded cannot be edited out like many interviews.

@Ed209 I admire your efforts and you are one reason I am here on Tinnitus Talk.....