Stop Giving Money to the British Tinnitus Association

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

    1. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Excuse my French, but what the hell is this?

      Is this a meme or something?
       
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    2. david c

      david c Member

      Tinnitus Since:
      01/2012
      Unfortunately this is the so-called "research" which the BTA has been helping to fund. It's the sort of guff that they are telling CBT and Mindfulness Therapists (most of whom won't actually have tinnitus themselves) to say to tinnitus sufferers. It shows an astonishing lack of empathy and lack of understanding of tinnitus. What more can we say?
       
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    3. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Their tweet is gone???

      Edit: I'm glad I still saw it. At least we know what they truly think. But sad and frustrating to see that they're teaching this to other people.
       
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    4. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Yup, they deleted it.

      EDIT:

      I was blocked after tweeting at her. The tweet is still up.

      24F9BDFF-C48D-47EF-9462-A173799B1301.png
       
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    5. Manny
      Dead

      Manny Member Benefactor Hall of Fame

      Location:
      United States
      Tinnitus Since:
      1/2018
      Cause of Tinnitus:
      central gain << NIHL
      This makes me so f*cking angry.
       
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    6. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Wow, that's so low of them.
       
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    7. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      What is the point of funding mindfulness and tinnitus research? We’re wasting money and beating a long been dead horse.
       
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    8. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
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    9. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      If you truly believe loud tinnitus doesn't exist (people only think it's loud) and that loudness doesn't matter at all, do people with tinnitus really need medical treatments? Isn't CBT enough if loudness doesn't matter?
      They funded the study.

      Bildschirmfoto 2019-06-26 um 17.57.09.png
       
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    10. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Oooo.

      Is there any way for us to find out how much money Chloe is getting paid?
       
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    11. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      There is a place for CBT in tinnitus as for with every illness. How come though we are not treating MS or other neurological conditions with CBT? Tinnitus is a physical problem end of.

      When you speak to seasoned tinnitus sufferers who don’t fear it anymore they’ll tell you they “put up with it”. That’s the best outcome, no magic bullet. No, “I don’t care if it stays.” Do you think CBT will help them when they are fully functional.

      Let’s be logical. Does the noise of a plane over your head affect you as much as the noise of your car engine? Of course I can screen out the plane noise if I’m thinking about something else but mostly it’s annoying. It’s called logic and we don’t need to spend money on reaching this conclusion.

      I hate it when the condition is trivialised, it’s a breach of our patients' rights in a sense.
       
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    12. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      26 years of TRT and it proved ineffective! Really, 26 years! Someone made 100s of millions.
       
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    13. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Is it a relative of someone in the BTA?
       
    14. Mathieulh
      Jaded

      Mathieulh Member Benefactor

      Location:
      Paris, France
      Tinnitus Since:
      05/24/2019
      Cause of Tinnitus:
      Chronic headphones use and acute noise induced trauma.
      It's decided, my money is never going to such a deceitful organization.
       
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    15. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      I don't know about 100s of millions but the main man behind TRT is I believe Pawel Jastreboff.
      If he made millions then he surely didn't reinvest in his website.

      http://www.tinnitus-pjj.com/
       
    16. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      People advocating CBT and TRT as appropriate and adequate therapies for those with severe tinnitus are charlatans whom I strongly suspect of financial motivation.

      The tinnitus ‘industry’ is rife with imposters feathering their nests at the expense of sufferers, peddling so called therapies, books, gizmos, supplements, and various other ‘snake oil’ remedies.

      A83DFB37-9DD0-4A06-AFFF-22998ABC224A.jpeg
      3BD41967-051F-4CF0-A806-2AFEA9747218.jpeg
       
      Last edited: Jun 26, 2019
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    17. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Chloe Woolmer:
      0?e=1567036800&v=beta&t=K8T1zKdOzTMjuKWbRm0cPu0SXP9pIvGe2NojSBgAzt4.jpg

      upload_2019-6-26_13-19-17.png

      Ah, the NHS.

      Perhaps they are cherry picking studies and researchers in order to downplay the condition so that they can save money on disability claims? Someone correct my thinking if this is flat out wrong.
       
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    18. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      The BTA funded the study.
      To be fair, it wasn't the BTA that tweeted about it (but they funded the study). It was another woman, Liz Mistry, a PhD researcher at the Leeds Trinity University. She simply posted photos and short descriptions of several different talks on her Twitter. After the tweet about the study got a few comments she deleted it (at least I can't find the tweet anymore, I don't think I got blocked). The woman behind the study is Chloe Woolmer.
       
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    19. david c

      david c Member

      Tinnitus Since:
      01/2012
      Indeed - the exception where CBT was foisted on a patient group is ME. But ME patients weren't having it - they realised the CBT research was simply trivialising their condition and was money which wasn't being spent on the bio-medical research they needed. In the end they were able to prove that the research study on CBT for ME (published in the Lancet) was based on flawed data.

      We can learn a lot from ME patients. Incidentally NICE are currently devising a guideline for ME as they are doing for tinnitus. But in contrast to tinnitus - where patient groups have barely been consulted so far (and organisations such as the BTA didn't even bother to consult their own members), NICE has organised a public meeting to try to meet ME sufferers demands and has agreed to have twice a many lay members on the ME advisory committee as there are on the tinnitus committee. It just shows that standing up for your rights as patients delivers results.
       
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    20. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Your ‘French’ is perfect Jack !!
       
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    21. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Think about this:

      If these hearing loss drugs that they are working on cure tinnitus then the government and insurance companies would have to pay for them. Right? Why would a government, especially one with socialized medicine invest in researching a drug that they would have to turn around and pay for patients to have?

      Guys I think we have a major uphill battle to fight here.
       
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    22. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      Because currently tinnitus costs the UK government over £2 billion PER YEAR, and the US government even more.

      Governments would much rather cover the cost of cures or treatments and save a boatload of money.
       
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    23. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Ah good point.
       
    24. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      https://www.organicfacts.net/health-benefits/oils/snake-oil.html
       
    25. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I can only speak about the ATA. Years ago before I had tinnitus I had contacted the ATA for a military vet who needed a tinnitus support group where treatments discussions occurred. This was also before Tinnitus Talk existed. CBT quickly was mentioned by the ATA.

      There are several reasons why the ATA supported CBT and most having to do financial disability medical care costs and government PR. At the time that I called the ATA, the USA had fought a major war battle. Many soldiers ended up with tinnitus, so placing those on disability with support of medical care would not only be expensive, but it would bring bias opinions against military involvement - like Agent Orange. Ear protection wasn't used and in some ways with gunfire and explosions going off, soldiers needed to be aware of their surroundings. I never was in the military, but this was told to me from doctors and nurses at my employment who were in the military and some were in this invasion battle as medics.
       
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    26. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Do we have a way to contact Chloe Woolmer? Twitter or something?

      I would love to discuss with her why her view and message is damaging in a respectful and civil way.
       
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    27. Mathieulh
      Jaded

      Mathieulh Member Benefactor

      Location:
      Paris, France
      Tinnitus Since:
      05/24/2019
      Cause of Tinnitus:
      Chronic headphones use and acute noise induced trauma.
      We have enough therapies, or even palliative care (to an extent) when it comes to tinnitus, associations should now focus on financing research into actual cures or effective treatments, such as hair cell regeneration. The noise is real and can actually be detected using fMRI, brain plasticity doesn't work for everyone and for some, an effective treatment is the only way to alleviate pain. In fact studies have shown that for a lot of people, tinnitus for a lot of people is perceivable as chronic pain and has long lasting dramatic effects on the quality of life. CBT can help, but it's not for everyone.
       
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    28. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      Her email address is 1302752@leedstrinity.ac.uk (found it on BTA website).
       
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    29. Jcb
      No Mood

      Jcb Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      Wait I thought the BTA was moving towards more cure based research? Did @David not say this in the interview he did with Steve and from what I remember in the podcast episode (correct me if I’m wrong)?

      I’m all for anything that helps a person cope with this hell, whether it be CBT to even TRT (which I think is a big load of nothing especially with the studies I’ve read on here which confirms what many knew - it really doesn’t work) etc but seriously how much more can we bloody learn from CBT, mindfulness? It’s wasted money at this point. Do they not know where to start in regards to research and they think funding or promoting this makes them look like they are actually doing something?

      I agree with what most has been said, BTA just can’t help themselves can they, if I’m honest I’m not surprised.
       
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    30. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Can you link to the source of this?
       
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