Episode 19: It's the Data, Stupid! — Christopher Cederroth & David Stockdale

[Nick47]

More can be found in the Overview and Filing tabs:

Companies House: Tinnitus Prevention Limited

Filing history shows that on 31 January 2022 the name of the company changed from Tinnitus 1 Limited to Tinnitus UK Limited. And it was approved by David Stockdale. Then in October 2022 the name was changed from Tinnitus UK Limited to Tinnitus Prevention Limited (because the other company for British Tinnitus Association changed to Tinnitus UK Limited, couldn't have two companies with the same name). That October name change was approved by Lynne Gillon. David Stockdale was out of the picture by that time.

It says the Tinnitus Prevention Limited is "Dormant".

All very odd. So these are basically private companies that register as charities? I just wondered on what may have been the actual differences in vision that caused the parting. I know in December a paid staff member said Tinnitus Week would focus on the Biobank.

It turned out to be 5 days of tweeting about protecting your ears. It's been diabolical.

 

[2noist]

All very odd. So these are basically private companies that register as charities?

No. The now "Tinnitus Prevention Limited" is a company limited by shares. It's not a registered charity. You can't be a registered charity if your company is limited by shares.

The actual "Tinnitus UK" is Private Limited Company by guarantee without share capital use of 'Limited' exemption. And they are a registered charity. Registered charities will use the limited by guarantee structure and are also listed on the Companies House.

Gov.uk: Set up a charity

"Your charitable companies will have to be limited by guarantees rather than shares when you register. Select 'private company limited by guarantee' on the form."

I know in December a paid staff member said Tinnitus Week would focus on the Biobank.

Would or should? Surely they had decided on the Tinnitus Week theme before December?

Twitter shows the "Views" for each tweet. Their tweets received on average 500 views or so. And all of those people already knew about the importance of using earplugs.

 

[UKBloke]

@UKBloke, I received the bizarre and surprising news that Deanne Thomas has already left her post as CEO of Tinnitus UK. This just looks bad, although I've got no details. She has a track record of serving charities for long periods of time and expertise in commercial and financial areas.

Hi Nick, sorry I didn't respond. For some reason I don't get notifications when people tag me.

The Deanne Thomas situation is strange. Even if it was a standard probationary period, the end of which, people can and sometimes do decide the fit isn't right, it's still quite a short time for such a public parting of the ways. You'd have thought they'd have had the discussion about the need for alignment of vision and ambition 3 months ago.

 

[Nick47]

@UKBloke, here's Tinnitus UK's latest offering.

Can we lock the paid staff members in and detonate?

Are they trying to kill us off?

 

[UKBloke]

Are they trying to kill us off?

Dunno about that but having read Lynn Gillon's short-bio on Tinnitus UK I do wonder whether or not they're taking tinnitus seriously enough:

Lynne suffers from tinnitus... In her spare time she loves to go to the opera, the theatre and spends time reading. In the winter she likes to be on the ski slopes as much as possible!

 

[Strawberryblonde]

Dunno about that but having read Lynn Gillon's short-bio on Tinnitus UK I do wonder whether or not they're taking tinnitus seriously enough:

Lynne suffers from tinnitus... In her spare time she loves to go to the opera, the theatre and spends time reading. In the winter she likes to be on the ski slopes as much as possible!

They couldn't downplay it any more!!!

 

[UKBloke]

They couldn't downplay it any more!!!

Tell me about it. Should've known all we ever needed was a bit of Nessun Dorma and a Saturday afternoon at Chill Factore.

 

[Strawberryblonde]

Tell me about it. Should've known all we ever needed was a bit of Nessun Dorma and a Saturday afternoon at Chill Factore.

That's the cure right there

 

[@dam]

@UKBloke, here's Tinnitus UK's latest offering.

Can we lock the paid staff members in and detonate?

Are they trying to kill us off?

View attachment 53647

I wouldn't look too much into it.

Honestly, it makes for a good enough scare campaign to stop potential new sufferers (considering for some of us, it would have taken nothing short of your own self time traveling back into the past to warn you).

They are still definitely keen on a cure, as all of us are. Plenty of ways you can get tinnitus without noise exposure.

 

[UKBloke]

@UKBloke, here's Tinnitus UK's latest offering.

Can we lock the paid staff members in and detonate?

Are they trying to kill us off?

Nick: I would've tagged you in my Tesla thread but not sure the tag thing works.

You remember we spoke a while ago about some research I've been doing into neural gating with respect to tinnitus/hyperacusis? As a continuation of that I recently stumbled across this paper by Marina Kliuchko.

If you're remotely interested, would you mind to read it and let me know what your thoughts are regarding what they're terming 'noise sensitivity' and how the paper seems to state that this isn't hyperacusis. I'm confused!

 

[Nick47]

You remember we spoke a while ago about some research I've been doing into neural gating with respect to tinnitus/hyperacusis? As a continuation of that I recently stumbled across this paper by Marina Kliuchko.

If you're remotely interested, would you mind to read it and let me know what your thoughts are regarding what they're terming 'noise sensitivity' and how the paper seems to state that this isn't hyperacusis. I'm confused!

@UKBloke, quite complicated to read. It seems the central nervous system can be in a state that leaves one susceptible to hyperacusis from loud noise. Something I have read, and this causes a grating problem in the central auditory system, that they have seen in imaging.

I'm not sure what they mean by noise sensitivity. At times it seems like they mean misophonia and a psychological reaction.

 

[UKBloke]

Thanks for taking a look.

I'm not sure what they mean by noise sensitivity. At times it seems like they mean misophonia and a psychological reaction.

This was my impression too. Seems like an overly complicated paper that doesn't quite get to the point somehow. Bit of a shame.

 

[Nick47]

@UKBloke, so the question I have is what's happening with the tinnitus biobank? In December last year I had an email from Lucy Straker saying:

In 2023, we have exciting developments to announce as this moves forward. By Spring, we hope to tell you more about our feasibility pilot, which we are working on with our academic partners.

The learning from this small-scale study will inform the larger project. There will be opportunities for you to be involved in several ways in this pilot, so keep an eye out for updates from us!

 

[UKBloke]

@UKBloke, so the question I have is what's happening with the tinnitus biobank? In December last year I had an email from Lucy Straker saying:

Looks like Lucy Straker's moved on. Did they even get a new CEO yet? Finding it hard to keep up with Tinnitus UK.

P.S. - just read your meds post. Hope you're doing OK, man.

 

[Nick47]

@UKBloke, Lucy Straker wasn't the CEO. That was Deanne Thomas. They shoehorned an existing staff member in after a "successful" interim period. Funny what they deem success, hey.

Unfortunately, I would prefer no medication, but I'm sure anyone with a chronic illness would say the same.

 

[Nick47]

1 year later and another Tinnitus UK CEO leaves. Usual bullshit soundbites. Is there friction with Lynne Gillon, Chair of Tinnitus UK? @UKBloke, and what do their ambiguous statements about "no one suffering from tinnitus" really mean?

→ Tinnitus UK Announces Departure of Chief Executive Officer

 

[UKBloke]

1 year later and another Tinnitus UK CEO leaves. Usual bullshit soundbites. Is there friction with Lynne Gillon, Chair of Tinnitus UK? @UKBloke, and what do their ambiguous statements about "no one suffering from tinnitus" really mean?

→ Tinnitus UK Announces Departure of Chief Executive Officer

I'd almost forgotten that charity even exists to be honest. There may be friction between Lynne Gillon and the recent CEOs but any moves made would need to be done with the full approval of the trustees. I just don't think they're hiring the right people, which points to an institutional problem.

 

[Nick47]

The charity Tinnitus UK is facing financial trouble, but it's difficult for me to feel sympathetic. They have put out an urgent appeal for donations.

However, after 50 years, we still have no treatments, and their 2022 offer to engage with other support and patient groups was brushed aside.

Many of us feel a frustration that seems absent at Tinnitus UK. If sufferers had faith in the organization and could see a pathway with clearly defined goals, perhaps high-net-worth individuals would have contributed. If Tinnitus UK were a private company, it would likely have gone under decades ago. In the past two years, we've seen CEOs come and go without any explanation, yet these appointments were made by the trustees.

As severe patients often cannot work and the DWP does not recognize tinnitus as a disability, some of us suffer in poverty despite having high-level qualifications. Although Tinnitus UK ran a good media campaign during Tinnitus Week this year, it ultimately feels like too little, too late.