Stop Giving Money to the British Tinnitus Association

Discussion in 'Awareness & Fundraising' started by Gl0w0ut, Apr 10, 2019.

    1. JohnAdams
      Greedy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      To be fair, curing hearing loss won't cure all cases of tinnitus and they are specifically into hearing loss. Most of us would benefit from hearing loss cures BUT, we need to start distinguishing between the symptoms and the etiologies. We need to all get smart and educate ourselves.
       
    2. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      LOL, yes!!! Know anyone? ;)

      Wouldn't that be the best thing ever to have on your resume? I'd love nothing more. And as an added bonus, I'd be rid of my own tinnitus, which still keeps me up at night, so double whammy!

      I like your attitude :)
       
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    3. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Oh yeah, let me add this, @Gl0w0ut, @JohnAdams, @Watasha, @TuxedoCat, @Starthrower and anyone else following this thread:

      If you are interested in donating to Tinnitus Hub - or rather, donating again, because most of you already have - you can be assured that 100% of your donation will go into our projects; we don't have salary or office costs. And we offer the possibility of 'earmarking' your donation for a specific project, e.g. a research project, a podcast episode, media outreach, or anything else you find important. So it will never just disappear into a black hole :)
       
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    4. spedgas
      Gloomy

      spedgas Member Benefactor

      Tinnitus Since:
      09/2018
      Cause of Tinnitus:
      Unknown
      You’ve convinced me on this one. This organization looks pretty legit. The donation link even lets you designate where you want the money to go. Who knows where it goes once the money gets there, but it makes me feel like I have some control. I’ve donated monthly to three different organizations for the last six months. I’m going to concentrate on this one for a while.
       
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    5. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Yes. This is my own choice for donations concerning tinnitus. I know exactly where the donation goes and that each dollar is used for our tinnitus community.

      Glad to read about earmarking where we would want the donation to be used.

      :huganimation:
       
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    6. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Yes back in 2006. They found out the hard way it was a wrong decision.

      A few years back they decided to go back to the original mission.

      I think it is too late and too many burned bridges to recover ground lost.
       
    7. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Do you have any idea how this affected the level of contributions to the ATA?
       
    8. JohnAdams
      Greedy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      They're useless.
       
    9. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      No not really @Watasha. But the ATA staff kept being reduced to almost no one. When I was active there there was an office full of wonderful dedicated staff. The changes that occurred created a stream of lost revenue on a revolving door of different Executive Directors and the last one I had contact with left to work with the Red Cross.
       
    10. ringinghours

      ringinghours Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      unknown
      If people are expected to part with their money for the hope of finding a cure it needs to be done with the chance of making a profit if a treatment is found. Like pooling together $500,000 and the amount of money a person contributes equals their stake in the company. The problem is finding a treatment would probably cost millions.
       
    11. OnceUponaTime
      Frustrated

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      We can make it into an Online Museum of Tinnitus! :rolleyes::joyful:(y)

      Somebody better start collecting these... lol.

      images.jpg
      ring4.png
      ring2.png
      Ring_DROP8_MR.jpg
      ring5.jpg
      ring6.jpg
       
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    12. JohnAdams
      Greedy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I've got some Ring Relief. I really want to see everyone involved in those scams sent to prison.
       
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    13. Allan1967

      Allan1967 Member Benefactor Hall of Fame

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Once again the British Tinnitus Association has announced on their Facebook page yet another BTA funded research program into... wait for it...

      Fucking MINDFULNESS! Again!

      Waste of f*%kin space!
       
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    14. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      Are you kidding me????
       
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    15. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      Yeah, they are probably all "farts & giggles" laughing all the way to the bank, with no remorse whatsoever.
       
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    16. spedgas
      Gloomy

      spedgas Member Benefactor

      Tinnitus Since:
      09/2018
      Cause of Tinnitus:
      Unknown
      I'm not as quick to dismiss mindfulness as many here are. I'm sure it helps some people. I'm not currently one of them. It does seem silly to keep throwing money at it though. We should certainly be aware of where our donated money goes. I don't know what's more frustrating. The BTA spending money on mindfulness or the ATA spending massive amounts on management.
       
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    17. GSC
      Wishful

      GSC Member Hall of Fame

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      Acoustic trauma.
      Sigh.
       
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    18. david c

      david c Member

      Tinnitus Since:
      01/2012
      I'm not surprised - the BTA has its own mindfulness "favourite", whose multiple conflicts of interest in this area are regularly overlooked.

      As well as these research failings the BTA is currently involved with NICE's new treatment pathway for tinnitus in the UK... but has made sure that as few sufferers as possible are aware of the important decisions which are being made behind closed doors.

      But I'm not prepared to let these decisions be made without any input from tinnitus sufferers themselves - I'll be making people aware in due course of what they need to do to try to have some influence on what happens...
       
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    19. JohnAdams
      Greedy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      1,000,000% Agree and doesn't surprise me one bit. They are definitely hard headed and stiff necked and hobbling down their own path and they think they are actually doing something tangible. HAHA! It's okay, they have absolutely nothing to do with the biomed corporations that actually are working on treatments and possible cures. The so-called research community is completely disjointed and blind anyway.

      God save the queen!
       
    20. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      That’s interesting. Is this what you are referring to? –https://www.nice.org.uk/guidance/indevelopment/gid-ng10077/documents

      The list of comments on the guidance from stakeholders is interesting. The stakeholders include Neuromod. It doesn’t seem to include any patient groups, except the CFS leak one.

      https://www.nice.org.uk/guidance/gid-ng10077/documents/consultation-comments-and-responses-2
       
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    21. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      "The impact of a mindfulness intervention on tinnitus distress - volunteers required

      Leeds Trinity University is undertaking a study into the impact of a mindfulness intervention on tinnitus distress. Mindfulness has been evidenced to work for many individuals, though not all, so this study aims to explore individual differences that may be influencing the impact of mindfulness as an intervention. It is hoped that this could enhance the development of more individual, person-centred treatment plans."

      Can already imagine what they're going to write in their conclusion.
       
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    22. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      Unbelievable! I am not gonna give a cent more to the BTA if that's the agenda they have.
       
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    23. david c

      david c Member

      Tinnitus Since:
      01/2012
      Yes this is exactly what I am talking about, NICE's work on establishing a "tinnitus pathway" in the UK.

      The document you have linked to shows the list of comments on the consultation for the "scope" of the pathway:

      https://www.nice.org.uk/guidance/gid-ng10077/documents/consultation-comments-and-responses-2

      As you can see from it commercial organisations such as Neuromod and the Tinnitus Clinic have been significantly involved in trying to influence what issues the pathway will cover and how. The Tinnitus Clinic pushed for consideration of their Levo device on page 84 of that document- a clear example of commercial lobbying.

      So the companies which benefit financially from tinnitus have been involved but what about tinnitus sufferers and patient groups? Not so much.

      Both the BTA and AoHL submitted comments as part of the process. And David Stockdale (@David) is on the committee for the tinnitus advisory group. But did either organisation bother to consult the wider tinnitus community? I have seen no evidence so far - searching the BTA's website and Social Media - that it made any efforts to get feedback from the tinnitus community on this - maybe @David might want to respond about that??

      Although the consultation on the scope closed a while ago - the consultation on the "pathway" document NICE is producing will be starting in September. It's vital that the voice of tinnitus sufferers in the UK is heard - but unfortunately if we respond individually there's little evidence that NICE will need to take any notice of what we stay. We stand a sightly higher chance if we are involved as one of the stakeholders in the consultation. A full list of these is here:

      https://www.nice.org.uk/guidance/gid-ng10077/documents/stakeholder-list

      It would have been great if Tinnitus Hub could join as a stakeholder but unfortunately I don't think NICE's criteria for stakeholders allows this. As I understand it organisations can still join as stakeholders (the wording on this is a bit opaque), so it may be worth all UK Tinnitus Talk members contacting their local Healthwatch organisation to try to persuade them to join as a Stakeholder.
       
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    24. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I do believe we might be eligible. @Hazel and I will be looking into this! It might be a good community effort as well, to include our community in the process (when NICE asks us for input as stakeholders).
       
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    25. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Commercial influence on medical guidelines like NICE is a big problem and it's not much talked about. Industry can influence things via the medical literature (which gets reviewed to make the medical decisions), via the fact they often give payments to medical doctors, via "patient" charities who take money from industry. You can see how with some guidelines you can end up with a lot of commercial influence and less neutral unbiased influence and patient influence.

      See- https://www.theguardian.com/comment...ted-interests-nice-drug-company-heart-attacks and https://www.bmj.com/content/364/bmj.k5300.
       
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    26. david c

      david c Member

      Tinnitus Since:
      01/2012
      It would be great if Tinnitus Hub could join as a stakeholder - hope that you are able to do so.
       
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    27. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      We'll absolutely strive to do so. I hope to be able to provide an update on this soon. When looking at the current list of stakeholders, there are a number of names that are concerning to me, and I cannot help but wonder what some of their intentions might be... i.e. is patient benefit genuinely their goal, or is it just trying to make another buck by any means necessary (well, you already covered that in your post).
       
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    28. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      I think we can guess. I have asked the leader of my prior campaign what happened when she tried to register as a stakeholder. I know we didn’t get on the official list.
       
    29. ringinghours

      ringinghours Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      unknown
      You shouldn't give money to the BTA or the ATA. They are both scum of the earth. These organizations do nothing for tinnitus research. They've been around for decades and have failed the tinnitus community. If reasonable funding for tinnitus research was ever achieved this disease would have been cured a long time ago. It's a very underfunded condition. Even the ATA admits tinnitus is underfunded.
       
    30. JohnAdams
      Greedy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      upload_2019-4-28_2-49-42.png

      They've already stated that they think mindfulness helps you cope with tinnitus.

      What is further research going to show? That they are reconfirming this?
      Who is doing the study? One of their cronies?
      Can any sleuths dig that one out?

      If we can show an apparent conflict of interest then we can call them out.
       
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