Stop Giving Money to the British Tinnitus Association

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

    1. Hazel
      Dreaming

      Hazel Director Staff Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Interesting. We'd have to know a bit more about it to see whether/how we can support. Keep us posted, or PM me and Markku.
       
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    2. AUTHOR
      AUTHOR
      Gl0w0ut
      Inactive

      Gl0w0ut Member

      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Unknown
      Spot on. I need to dredge an old post I made last summer.
       
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    3. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Would you mind expanding on why you think his model is wrong? Perhaps if it's off topic you can PM or post it on the Dr. Rauschecker page and tag me in it, I would really appreciate it.

      I would also add that even if the theory of the gating model is wrong, his current research is trying to build a working model of tinnitus in primates whose auditory system is much closer to ours. I think not only this is worthy of funding, but should be a priority in funding.
       
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    4. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      You have no idea what you're talking about Erik. Minbo Shim is successfully treating people's hearing loss and tinnitus and I have first hand experience with this. Just because you don't believe it doesn't mean it doesn't exist.
       
    5. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Maybe they should rename themselves the British Stress Association?
       
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    6. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      @JohnAdams

      Out of curiosity, did you have an audiogram done since your treatment with Dr. Shim to compare with your pre-treatment one? I'm more interested in tinnitus reduction or elimination actually, but if would be nice to know if an improvement in your hearing made your tinnitus lessen.

      I always wake up to static noise even when I go to bed quiet. Frustrating. I do have HF hearing loss.
       
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    7. Hazel
      Dreaming

      Hazel Director Staff Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Let's stay civil here.

      @erik is right in the sense that we have no evidence of a cure from large scale clinical trials (yet). A few positive individual experiences do not amount to evidence of a cure for everyone.
       
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    8. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Just because you don't have the evidence you want for something to exist doesn't mean it doesn't exist. FACT. Therefore statements like "there is no cure" are ignorant assumptions. A better way to phrase it would be like the way you just did, that there are no large scale clinical trials showing that there is a cure or a treatment, which is correct.

      I feel like I'm in the desert with a large crowd of people that are dying of thirst and I'm like, "Hey there's an oasis over on the other side of this sand dune", and hopeless nay sayers keep declaring that there isn't because there aren't pictures and a map to it published by some oasis water authority figures. It's extremely pitiful.

      What has been shown, in a small scale human trial, is that PRP works on LGR5 positive sensory progenitor cells in the nose. The stem cells in out ears are also LGR5 positive. The evidence for further studies is totally warranted. I'm not part of a self appointed tinnitus association like the BTA or the ATA so nobody cares what I have to say. I know that Tinnitus Hub has a positive relationship with the BTA and it would be nice if you guys would phone them up and say, "hey one of our members and benefactors has undergone a treatment that he claims has improved his tinnitus, and he has told us exactly how it works and how to administer it, and maybe you should take some of the money you get to allegedly look for a cure and connect with some doctors that can replicate this." Instead you just keep repeating the same old line that there's no evidence for this, and there won't be until someone looks further into it. If they are searching for a cure then they should be actually searching, but instead it seems like they are actually just waiting for someone else to do it.
       
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    9. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      If a sample of one was all it took to declare a cure, we'd already have, based on this forum alone, a lot of cures: saffron, curcumin, apple cider vinegar, herbs of all kinds, chiropractic work, meditation, craniosacral stuff, oxygen therapy, LLLT, ACRN, white noise, TRT, etc...
       
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    10. Hazel
      Dreaming

      Hazel Director Staff Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      How do you know this isn't happening? You make a lot of assumptions about what we do or don't do. Trust me, we are working on this. But as I keep repeating ad nauseam, you seem to presume we are some kind of large powerful organisation, whereas we're just a very small group of volunteers with little time and negligable funds. It would be really nice if you would stop publicly attacking us for our supposed lack of initiative.
       
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    11. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      This is kind of a logical fallacy. Just because someone can’t prove something doesn’t exist, doesn’t make it exist. If this was the case, than I could say the Flying Spaghetti Monster exists, and if no one can prove it doesn’t, does that mean it exists? Of course not.

      Also, seeing that this is a medical treatment people want to see the cold hard facts. Studies, trials, etc. If PRP is the cure you describe, why doesn’t the doctor in South Korea write a paper, do double blind placebo trials, get peer reviewed from a reputable source? All we have from him is self reported data. It is understandable why people are skeptical and don’t believe. I am glad that it worked for you, but what if certain subgroups of tinnitus don’t have the same effect?

      People want to know for who and why it works. They want to see evidence and backed data to support his claims. I am still confused as to why he hasn’t done this if he says it’s so effective. Doesn’t make logical sense to me. This is why people aren’t throwing $18k at his treatments because there are too many unknown factors.
       
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    12. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Oh I agree.
      He's working on it.
      You're right, his treatment definitely won't work for all subgroups, but it specifically targets loss of hair cells from age and noise, which is the vast majority of tinnitus sufferers.
      I've explained it multiple times.
      I totally agree and my entire point is that we should be pushing for more ENT's to try this on willing patients, not necessarily for people to hop a flight to Seoul. This is why I have explained how it works and how it is administered and not kept anything secret. I have even tried to show as much evidence as I can as to how it works.

      A PRP kit costs a few thousand dollars. That and willing ENT's local to willing patients is the only thing standing in the way of more people trying this. At this point I have explained it in as much detail as I can and there should be no reason for anyone to have to travel to Seoul to receive a treatment like this.
       
    13. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      I'm not attacking you. I am just debating the facts. I actually like you guys I'm just trying to push you.
       
    14. Hazel
      Dreaming

      Hazel Director Staff Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Wait a second here, didn't you just accuse us of not doing enough? You literally said:
      And I responded that we are working on it.

      We also gave you the opportunty to contribute to a dedicated podcast episode on regenerative medicine (not per se your experience with Dr. Shim, but the field in general), but have not seen any actual work from you to make this happen.

      Sorry, but it just gets really tiresome when we are doing everything we can (within our very limited means) and you still make it sound as if we don't care.
       
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    15. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      If @JohnAdams did a podcast with Hazel, Jack Straw, and maybe some others, that would be a great way to get the word out regarding Dr. Shim's treatment. Probably better than a written testimony.
       
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    16. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      I know you care. I am working on a write up for the case for PRP and bone marrow in the treatment of SNHL that I am going to share with you guys and probably as many ENT's and otolaryngologists in America that I can find an e-mail address for. I'm just super crushed at my job right now and between that and basic chores and spending time with my son it's been hard to try and start on that.
       
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    17. AUTHOR
      AUTHOR
      Gl0w0ut
      Inactive

      Gl0w0ut Member

      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Unknown
      The gating model is based on the idea that tinnitus becomes chronic because a so-called “noise cancellation” mechanism fails. However, the purposes mechanism in the Thalamic Recticular Nucleus has not been elucidated as this mechanism.

      Additionally, several replication studies have produced results too inconsistent to be considered correct. The model also seems to be unable to explain abnormal markers if the tinnitus brain, such as temporal lobe EEG abnormalities that occur independent of the prefrontal cortex, an area crucial to the Gating Model.
       
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    18. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Thank you for your response, but I am not sure that I am able to piece together the thought that you are trying to convey, most likely because I am not that familiar with Neuroscience.

      Have you reached out to Dr. Rauschecker to inform him of your concerns?
       
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    19. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Yeah. @Hazel and @Markku work endlessly to provide this site for YOU. They are also "crushed" with jobs and family and life outside of this arena.

      But @Hazel finds the time to travel to Milan for a very important tinnitus cause and no one seems to take interest in that yet alone thank her.

      Tinnitus Talk could easily shut down and then where would everyone be?
       
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    20. AUTHOR
      AUTHOR
      Gl0w0ut
      Inactive

      Gl0w0ut Member

      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Unknown
      A few days ago, I made one of my usual angry rants against the British Tinnitus Association and my anger that they are promoting a behavioral therapy over cure research. It was brought to my attention that this site has attempted to raise money and allow us to vote on where that money goes.

      As such, I believe that perhaps it is time to take matters into our own hands. If we want actual biomedical research and not behavioral research, then maybe we can send a message by getting funding from us (tinnitus patients who are bothered by it) and showing the community what we really want.

      If you're frustrated by ENTs apathy, show them we won't settle for just CBT, TRT, or some other behavioral intervention. Show them what we really want. I don't have a lot of money to give, but I'll happily give something if it goes towards ACTUAL tinnitus treatment research. Anyone else with me? I understand it's easy to just give and accept the fact that it is permanent, but science has pulled off amazing things in the past. I'm not exactly optimistic myself, but what other choice do we have? I think by funding research ourselves, it allows us a say in the scientific process.

      Who's with me?
       
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    21. AUTHOR
      AUTHOR
      Gl0w0ut
      Inactive

      Gl0w0ut Member

      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Unknown
      This is a copy and paste from a post I made last summer about the factors that influence tinnitus research and the search for a cure. Below are four factors I consider as having significant influence on tinnitus researchers and clinicians like audiologists and ENTs and how they treat patients like us.

      1. Tinnitus is a "symptom" and not a "disease". It is often the case that many academic and medical professionals regard tinnitus as a symptom rather than an actual affliction. Indeed, the tinnitus is usually indicative of hearing loss, TMJ, or other medical issues. However, such professionals sometimes fail to identify what this is specifically a "symptom" of. I think its high time for medical and academic professionals to regard tinnitus as a disease rather than just a symptom. The very manor in which we approach the affliction is first defined by how we classify it. Nobody wants to cure a "symptom", even though ironically it is the associated symptoms of tinnitus that are often treated instead of the tinnitus itself.

      2. Research is complicated by money. Like most things in life, money is what makes the world go round. We don't develop chemotherapy drugs because we want to treat cancer per se, but because the company overseeing its development has profit potential. In the case of tinnitus, there is an influx of literature this century compared to the previous century. However, there is still a severe lack of it compared to other afflictions. And who can blame the government and other grant providers? After all, why spend millions to cure an affliction people are expected to cope or "habituate" to while diseases like cancer, diabetes, and heart disease afflict and kill millions every year? You can say its because depression and suicide are consequences of tinnitus, but statistics show that the this is only a small minority of the community. These sufferers do matter (to me anyways), but again, science will simply prescribe to treat the depression, anxiety, and insomnia because such treatments exist. Scientists are just as lazy as regular people are, and the less work they have to do, the better (f0r them).

      3. Current treatments have a conflict of interest. Whether its audiologists and ENTs getting kickbacks for prescribing expensive and somewhat helpful devices like hearing aids and cochlear implants, to CBT and TRT specialists charging a small fortune for the dozens of sessions said to be required before relief is "found", to the endless prescriptions of antidepressants, antipsychotics, and other useless medications (with the exception of sedatives and glutamate antagonists), professionals may feel the need to guard their cash cow businesses by promoting their treatments over research for a cure.

      4. Research knows little about tinnitus and results in disagreements about pathology. Finally, of the research that is being done, there is often a conflict over how tinnitus develops, what brain changes occur because of it and nothing else, and fights over whether the so-called "gate keeping" theory of tinnitus purposed by Rauschecker provides any insight or not. A 2014 meta analysis paper concluded that current neuroanatomical evidence fails to substantiate the theory, though does not reject it. In the end, research seems to have stalled, and hedges off its chips on higher brain regions for treatment with preexisting drugs (like SSRIs) instead of targeting the commonly know burst firing areas in the brainstem's Dorsal Cochlear Nucleus.
       
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    22. Markku
      Inspired

      Markku Founder Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I'd like to remind that, besides @Ed209 taking the initiative to kick it off, the BTA was a key part of the Danny Boy campaign, they handled the financial side of it, helped with the grant call, applications, and administering the fund. The monies raised from the community were 100% allocated to the fund recipient (who turned out to be Elouise Koops).

      Here are all the pertinent links, in chronological order:
      And again, we weren't able to reach the £10,000 goal (see the link "Let's Cure Tinnitus and Hyperacusis"). That's NOT to say the £5,000 was anything to sneeze at, it was a success, a few members donated multiple times very generously to make it happen, but it's a relatively modest sum when it comes to financing tinnitus research.

      Currently Dr. Rauschecker is having a fundraiser of his own, and it's nowhere near the goal, unfortunately.

      Support Dr. Rauschecker's Tinnitus Research — a Man Who Really Means to Make a Difference

      (@Hazel interviewed Dr. Rauschecker recently in our inaugural Tinnitus Talk Podcast episode.)

      I'd like to hear how you think we can improve from this? We are planning on doing a repeat of this kind of Danny Boy fundraiser sometime later this year, where the donors are able to suggest, and then vote on who gets the raised money.
       
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    23. Autumnly
      Wishful

      Autumnly Member Benefactor Hall of Fame

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      While this is all quite interesting, just talking about it here on Tinnitus Talk won’t do anything. Write an article, make a video, create a social media campaign. I’d say most core members on here are already very aware of the things you’re talking about. We know that most people with or without tinnitus don’t donate to research, just asking members on here whether they would donate or not won’t achieve much.
       
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    24. AUTHOR
      AUTHOR
      Gl0w0ut
      Inactive

      Gl0w0ut Member

      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Unknown
      I mean, it’s a start, no? I don’t have the ability to just drum up a campaign. It has to start small and snowball into something big.
       
    25. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      No.
       
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    26. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      There are positive aspects about the BTA as mentioned above by @Markku.

      Now, there are mistakes made to sway members from donating. But at the least this organization has worked with Tinnitus Hub/Tinnitus Talk and this has never been even a slight blimp with the ATA.

      @David is a member here and has often posted information.

      I do not agree with the BTA ambassador situation in any way. I choose not to mention the name because the position taken was only for personal publicity. They lost a member @TuxedoCat and understandably so.

      But what the BTA did for @Ed209's fundraiser in the memory of @Danny Boy of Tinnitus Talk was remarkable.
       
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    27. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      On the BTA's Facebook page they have mentioned something we have discussed many times on this page... the concept of each tinnitus sufferer donating $1 or £1 a month and the amount of money it would generate which could be put towards research.

      Their website has the capacity to take £1 donations.

      I have consistently said this is the ONLY way we will boost our chances of a cure immensely. If you can, please get onboard with this.

      @David This is a brilliant idea, it is the way forward so please please please promote it heavily and put the money towards research for a cure!
       
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    28. DaveFromChicago

      DaveFromChicago Member

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      During my last visit to an ENT Doctor I was told that the medical community is acknowledging that this will be an epidemic condition for the retiring Baby Boom generation in the US.

      Amazingly, every fourth person I have mentioned this to who is in his or her mid 60's has told me that they have this to some degree.

      My audiologist said that their practice was getting at least one new tinnitus patient for every day of the year they were open.

      Perhaps this unprecedented pervasiveness is what will finally be required for enough research resulting in a landmark breakthrough drug/treatment.
       
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    29. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I agree with this. BTA is certainly experienced with putting out calls and administering funds thru a contractual arrangement with an investigator and their institution.

      I think there were some minor drawbacks to using GoFundMe that could be avoided by having donations made directly to a Tinnitus Hub/Talk fund at BTA. I'm not aware what has been discussed for a fundraiser later this year or if the plan is for BTA to run it with help from Tinnitus Hub/Talk, but I do trust those involved on the Tinnitus Talk/Hub side. And, I am very, very glad those discussions are taking place.

      Personally, I wouldn't think twice about donating to a fundraiser where Tinnitus Hub/Talk leadership and membership have decided on the purpose of the fundraiser and BTA act as the administrator.

      TC
       
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    30. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Personally, BTA have not earned my trust when it comes to choosing research projects for a cure. I'd like to be proven wrong so when, if ever, have they put money directly towards research for a cure?

      Have they said what the money will be used for?
       

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