More About the BTA and Tinnitus

Discussion in 'Awareness & Fundraising' started by david c, Aug 21, 2018.

    1. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      I'm really looking forward to the Expo and I'm sure it will be well worth it if anyone can make it and meet us in person.
      love glynis
       
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    2. emmalee
      No Mood

      emmalee Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      hearing loss
      I envy you, glynis, and all the others who will have the opportunity to attend the Expo. Hopefully much will be posted on TT for those of us who will not be attending. Photos, and lots of them please.:)
       
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    3. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      I'm really glad that I started this thread as it has raised considerable awareness about the BTA's approach to research. David Stockdale of the BTA has responded to the questions and I appreciate his time for doing so although many of his answers were less than convincing. Specifically we have learnt:

      1. The BTA is not spending any of the research money it receives through donations on work developing a cure through drug development or stem cell research. Many people donating money to the BTA for research (as I have done) had done so thinking that these were things the BTA was working on so it's important to realise that this is NOT the case.

      2. The BTA is largely spending research money focusing on "management strategies" research - principally Mindfulness Cognitive Behavioural Therapy" for a recent study led by Dr Laurence McKenna.

      3. Dr McKenna has a private practice financially benefiting from Mindfulness Cognitive Behavioural Therapy (MCBT). Despite this the BTA did not do any conflict of interest assessment when giving money for the research study he was running.

      4. The BTA passed the responsibility for conducting a conflict of interest assessment to a third body but did not ask whether such a conflict of interest assessment had been done or what the results of that were.

      4. Dr McKenna's study concluding that MCBT was an appropriate treatment for tinnitus parallels a recent Lancet study of CBT for ME Chronic Fatigue Syndrome, which turned out to have highly flawed data. Both studies put people who financially benefitted from selling a particular therapy in charge of researching that particular therapy. The results were flawed studies which hugely overstated the benefits of MCBT for tinnitus sufferers and of CBT therapy for ME/Chronic Fatigue Syndrome sufferers.

      5. Financially motivated research in short leads to biased results and flawed data.

      Dr McKenna will I believe be at the Expo which tinnitus talk has been promoting and attendees may wish to ask him about the financial conflict of interests at the heart of his flawed research.

      I've made it clear that the staff at the BTA are not bad people or insincere in their desire to help, but the BTA's flawed approach to research will lead in the long-term to negative not positive results for tinnitus sufferers.

      I do feel sad that this thread has featured regular personal attacks on myself and on other Tinnitus Talk members who have supported some of my arguments. This has clearly been a distraction technique by people who don't believe there should be any interrogation or debate about the BTA's approach to research. @Ed209 in particular has led attacks on myself in particular and on other tinnitus sufferers in general for (variously) not caring, not wanting research, being lazy or mean in terms of contributing. He has gone on about the maj0r problems he has had in raising funds. All I can say is that describing the people you are trying to get donations from as not caring, lazy, mean etc is never a good way of encouraging people to donate and that may well be the reason why he has been finding his fundraising so difficult.
       
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    4. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      @david c that's a rather one-eyed summary of a lengthy discussion we had.

      Hope people take the opportunity to read the whole discussion and draw their own conclusions.
       
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    5. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      Thank you. That was before I read the article. I just posted it quickly outraged that I personally feel curative based research is a bit too slow. The societal cost is devastating.
       
    6. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Please try not to feel sad @david c for speaking your mind and what you believe to be true. I agree with a lot of your comments. My reasons are based on my experience with tinnitus for the last 22 years. When I first got the condition I was just as enthusiastic as some of the people in this forum about tinnitus research, seminars and conferences wherever they were held. I subscribed to tinnitus journals and bought DVDs of a conference that lasted over 6hrs. I am sorry to say that it bored the life out of me. Much of it was taken up with, some of the well known medical professionals in ENT, patting each other on the back and praising one another, for baffling ordinary members of the public seated before them, that haven't a clue what they are talking about when using their medical jargon!

      Therefore, when I say: ENT doctors are physicians and know about the anatomy of the ear. They are able to treat underlying medical problems associated with it. Medically or surgically and this I believe they do well, I know what I'm talking about. However, when it comes to tinnitus, the majority of them know very little about it and only know what their tinnitus patients tell them because most have never experienced it.

      All the best.
      Michael
       
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    7. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      We just have to do the same thing the Lupus, cancer and Alzheimer's community does and embrace research more then ever.

      Because I am a frequent user on this forum, I am sure by now some actual researcher have stumbled across my amateur college drop out education trying to break down extremely complex neuro/cochlear models that play roles in tinnitus, hearing loss and hyperacusis. I obviously am not qualified to be doing this and there are probably some things I over simplified or am treating educated hypothesis as if they are full working theories or I got it outright wrong.

      The current knowledge about tinnitus, hearing loss, hyperacusis by Susan Shore, Roland Schaette, Charles Liberman, Josef Roschecker and important credible researchers should be broken down into laymen's terms and added to a section on this forum for the public to know the mechanisms of their conditions.

      It would be awesome if actual researchers could make videos with 3d models explaining the known mechanisms of tinnitus as well as complex research broken down into laymen's terms. Discuss mechanisms like signal timing, GABA increasement and hearing loss restoration as potential treatments for tinnitus.

      This would be super helpful so people know there is help on the way and that research is not in the total dark.

      I see people on this forum "including myself" ask why they have balance issues, eye floaters, muffled hearing and or acoustic trauma but perfect audiograms, two types of hyperacusis both painful and abnormally loud. They ask about treatments and sadly some are board the homeopathy pseudo-science train

      I'm not trying to act like a know it all in the slightest or claim to be an expert. I am just upset.

      The way things are going is just depressing, it is literally stereotypical to see a new comer with acoustic trauma join this forum after taking a pure tonal audiogram and say no hearing loss (yet tinnitus, noxacusis, and vestibular problems)

      Can we safely say Charles Liberman's research on hidden hearing loss makes their ENT's audiogram inaccurate? or do we have to act like it's not important for patients to have misinformation and allow them to remain confused about the condition that they suffer from?
       
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    8. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      @David I really appreciate that you, someone from the BTA is at this forum taking the time to answer these questions.
       
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    9. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @David,
      The BTA are amazing. I know just how hard you all work.

      We have spoken and emailed and looking forward to meeting you, Nic, Emily, Marcus, etc.

      love glynis
       
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    10. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      It does seem a bit contradictory that Laurence McKenna is associated with both TRT (http://tinnitus.org/) which teaches to avoid silence and to use sound generators to mask tinnitus ear level 10hrs a day and even all night AND with Mindfulness Based CT which says that using noise or sound generators, avoiding quiet places, etc are really manifestations of worry and attentional focus which leads to making tinnitus worse! (The Psychology of Tinnitus https://www.tinnitus.org.uk/mindfulness-for-tinnitus).

      Gosh, it's sort of like the dentist handing out sugar to his patients. LOL!

      I'm in the US, but if I were going to the Expo, I'd ask him about that.

      TC
       
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    11. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @david c, what was the role of the ME Association in this? Did the ME Association partially fund the study in question? Did the ME Association have a part in challenging the study in question?
      Thanks, I find this interesting as well, TC
       
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    12. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Elizabeth Marks and Roland Schaette are both on the BTA PAC and had major roles in the MCBT trial. They may not have direct power over the other 34 in the organization, but it's not difficult to recognize that these 2 accomplished and published researchers will continue to influence 9 Trustees who do have the power and set the agenda for the rest of the organization.

      Actually, I'm not convinced that greed, or the desire to make lots and lots of money, is at the center of this. Rather, I believe tinnitus treatment has been relegated to audiologists and psychologists by physicians, PCPs and ENTs who know little about the condition, have nothing to treat it with and therefore are happy, if not a bit relieved, that they have a clear path to refer the tinnitus patient on to someone else. It sort of absolves them of any feeling of frustration or guilt or motivation to clamor for a cure. Fortunately there are some audiologists and psychologists willing to take the referrals. The clinical knowledge base for tinnitus is with them.

      BTA and Tinnitus Hub do a great job engaging the tinnitus community. @david c found a worthy opponent when he sparred with @David. Hopefully, neither take it personally because it seems a valuable, albeit somewhat uncomfortable, tool for bringing out the issues.

      TC
       
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    13. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @TuxedoCat

      I disagree with your comments and think the points that @david c raised in his post were valid and all of them true.

      All the best
      Michael
       
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    14. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hi Michael, I wish you the best as well.

      Here is how I net out so far on david c's points.

      Agree, @David has said that BTA is not spending money on drug development or stem cell research. I haven't contributed directly to BTA and I can't know what other people think. I would be more inclined to contribute to BTA if they didn't confine their research spending to UK investigators.

      2. Agree. With Marks and Schaette on their PAC and also authors on the MCBT paper, it looks to me like they are poised to continue that line of research. For reasons given in #4, I hope I am wrong.

      3.&4. Not entirely sure this was BTA's responsibility. I believe it would have been up to the institution conducting the research and the authors of the paper to declare a conflict at the time of submission. Having said that, I could believe that the investigators, BTA and perhaps a legal representative had a conversation about it and come to the conclusion that no conflict existed. Healthcare Companies and Pharma use investigators from private practice for clinical research studies. McKenna's affiliated with the Royal National Throat, Nose and Ear Hospital on the publication, so I guess I'm just not tracking on how this helps his private practice.

      4. Personally, I believe psychology studies, in general, are flawed. The strongest conclusions about efficacy are made from randomized, double-blind (investigator and participant), placebo controlled trials. Neither the MCBT-tinnitus study nor the ME study were double-blind or placebo controlled, making them susceptible to bias- either intentional (hope not) or unintentional. In addition, psychological responses have alot in common with the placebo response. Psychologists are aware of this and have their reasons and responses to address the limitations. Personally, I think they are important limitations and for that reason don't believe that strong conclusions or claims can be supported by a study that is not double-blind and placebo controlled. In my opinion, saying things like "dramatic" reductions in a press release is just over the top and shameful. Again, this is my personal view.

      5. Perhaps. Not yet convinced greed is a driving force in this instance of the MCBT-tinnitus study.


      Other stuff- I don't like either it when Ed badgers people about money.

      TC
       
      Last edited: Aug 28, 2018
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    15. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Interesting point. My suspicion is that as long as both pay a nice salary for him, Dr Mckenna really doesn't care about these contradictions which do, as you say, exist. The man to be honest is a charlatan.

      The ME Association seems to have been highly critical about the Lancet study promoting CBT for ME - see link here

      https://www.meassociation.org.uk/20...eed-for-good-quality-research-31-august-2018/

      One of the interesting things about the ME Association is that - in a completely opposite way to the BTA - it positions itself as representing the interests of the ME sufferer not the research and CBT industry. See for example this link it which a highly critical stance to some recent research on ME is given.

      https://www.meassociation.org.uk/about-the-mea/policies-and-documents/

      It would be impossible to imagine the BTA adopting such a critical response to tinnitus research - it is far too closely tied up with the audiology and CBT commercial fields. We really need an organisation which represents solely the interests of tinnitus sufferers and adopts a similarly highly sceptical attitude to research. I had hoped that Tinnitus Hub would be it, but to be honest with the import of personnel associated with the BTA it too seems to have been compromised.
       
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    16. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      What on earth are you talking about?

      We work with the BTA and other tinnitus organisations but we are independent. We have sought out cooperation because it seems senseless to be working in a bubble, you can achieve far more when you work together in a space so small as tinnitus.
       
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    17. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      @David, have you or any of your associates looked into anything about cochlear cilia regeneration?

      Have you pondered the possible beneficial effects of naturally occurring Notch1 inhibitors?

      Have you reached out to researchers that have been involved in hearing restoration and educated yourself about these developments at all?

      Have you been following any of this at all? I am sincerely interested in your opinions about these things.
       
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    18. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      part.jpg
       
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    19. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      Sorry for his rude over technical way of asking the question,

      What he means to ask is if therapeutics aimed for treating hearing loss should also reduce tinnitus?

      Tinnitus in most cases is induced by hearing loss and research suggest that low GABA levels combined with hearing loss (usually SNHL) causes tinnitus generation in the Dorsal Cochlear Nucleus and other regions of the brain.
      TinnitusHome -- What causes tinnitus



      If cochlear hair cells and ribbon synapses were restored to there original state by a hypothetical therapeutic would the brains tonotopic map reorganize itself and quiet tinnitus?

      Is research investigating this?
       
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    20. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      Is tinnitus being cross discipline researched with hearing loss research, phantom limb research, TMD research and other neurological conditions that may shed light? Would correcting the original problem that caused tinnitus allow the brain to unwire the tinnitus plasticity?
       
    21. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      In terms of what I'm talking about as a really independent association which represents the sufferers of a condition rather than those who profit financially from that condition the gold standard would really be the ME Association. They are in favour of research for their condition. But not just any research.

      https://www.meassociation.org.uk/research/

      What sort of research do we fund?

      We invest only in biomedical research studies and infrastructure projects that will help lead to:

      • A better understanding of underlying disease mechanisms,
      • The development of reliable diagnostic tests for use in clinics,
      • Safe and effective forms of treatment.

      That's a massive difference from the BTA whose research has been concentrated almost entirely on ways of monetising tinnitus for the CBT, audiology and mindfulness industries. That is very much the focus of the About Tinnitus event which Tinnitus Hub and the BTA have been promoting so heavily. Attendees pay £20 for the privilege of having various companies try and sell them various tinnitus products and therapies of dubious merit. Thanks but no thanks.

      To be honest Steve you sound like the ME Lancet researchers (whose dodgy data the ME association campaigned to expose) who lectured ME sufferers that they should be really, really grateful for any research being done on their condition, even if it was dodgy research that actually was delaying real research into a long-term cure.

       
    22. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      Why do people keep parroting no one knows anything about tinnitus? (is this really true? or just trendy)

      From what I see researchers talk about fascinating things like hidden hearing loss being relating to cochlear ribbon synapses damage being unpresent on a tonal audiogram, hyper fusiform cell activity in the dorsal cochlear nucleus after lack of input from the audiotory nerve, GABA deficiency leading to chronic tinnitus. Painful hyperacusis being related to outer hair cell nerve fibers and the trigeminal nerve somehow.

      There is also active discussion about restoring hearing such as Frequency Therapeutics and ways to stimulate the audiotory brain to reduce tinnitus like what Susan Shore and the UoM is doing. Roland Schaette himself said we are closer to finding a treatment for tinnitus as the mechanisms are being identified. Biotech out to reverse SNHL seem to be very confident in a treatment coming soon. Some are also saying treating hearing loss will treat tinnitus or it is hypothesized.

      What I want to know is research really in the dark, or are negative people on the forum and uninformed ENT's just saying that?
       
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    23. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      that video makes sense, I didn't realize the DCN was that close to the occipital lobe. that kinda explains why the things I look at, motion, light, etc, creates tinnitus noises in my brain. I wonder if there is anything useful that could come from that.
       
    24. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

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

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Well, this has all escalated!

      I could answer, but don't really want my role here to be continually defending Dr McKenna, so asking Dr McKenna at the expo is a good idea. I will say he doesn't practise TRT though.

      Many in this strand also support Dr Schaette's work, we try to get a balance of different opinions and disciplines on the PAC involved in both research and treatment/management. There is a separation between the Trustees and PAC - trustees certainly do not always go with the consensus of PAC.

      Yes, although from the sidelines rather than anything we're actively involved in. A lot of money is flowing into stem cell research in this area, as if it works it will 'cure' hearing loss. It's certainly a possibility a side effect will be curing tinnitus if successful. I've followed Professor Rivolta's work (as he's in the same city https://www.sheffield.ac.uk/bms/research/rivolta ) and discussed progress with him a few times. Seems very promising but it's early days. Seems there's some basic issues I've not quite understood around it too - how do you know you're regenerating the 'right' bit - happens in animal models but in my mind it seems a little more challenging when you're trying to target specific hair cells? Interesting to see the next phases emerge.

      In terms of pharmaceuticals, I think there's the same issues from what I can see, but all promising. Similar challenges to tinnitus research (for hearing regeneration) for big pharma to overcome but it is happening. Research in these areas (stem cell and pharma) is more advanced for the restoration of hearing than it is for tinnitus for a few reasons - better understood models and outcome measures, bigger funding, clearer opportunities and you might address other issues (such as tinnitus) into the bargain.

      I'm certainly no expert on any of this and don't proclaim to be, but do try and stay up to date with what's happening and ensure people who are working on it are thinking of the relevance to tinnitus. Sure there's people here who understand it better than I.

      No - there's not enough cross research with other conditions and something the tinnitus research field needs to improve. The ones you quote there do get regularly quoted at tinnitus research conferences as potentially having cross overs but it doesn't seem to happen. Not sure why, be interested in other's thoughts as to why.

      There is research into this and is interesting IMO. There is research looking at dual sensory stimulation and tinnitus. Using sound or light or touch to stimulate another sense and see if it suppresses tinnitus.

      Yes and no! I'll post more on my thoughts on this later this week, maybe in a separate strand because I believe there are fundamental issues with tinnitus research that the latest pharma trials have shown - it's exciting because we've not had pharma being as open as to why they failed as they are now but it does show how far there is to go to systematically 'cure' tinnitus. That doesn't rule out a eureka moment and more research groups and pharma companies are interested in tinnitus then ever before.

      We try and cover the progress made annually in our research reviews:
      https://www.tinnitus.org.uk/atrr2017


      I wish! Might spend the rest of the night dreaming what we could achieve with that sort of income!
       
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    26. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hello @Contrast

      Have you ever looked at the videos from a seminar held about a year and a half ago at Massachusetts Eye and Ear Infirmary? Dr. Polley is the Director of the Lauer Tinnitus Lab and he might address your question in his presentation- What’s New in Tinnitus Research

      Kind Regards,
      TC





       
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    27. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      @David I certainly appreciate you willingness to answer our questions.
       
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    28. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      @David It is hard to suffer tinnitus and not have a cure. It makes you suspect the system at large. The history of the FDA, corporations at large, and the absolute fact that cheap readily available substances have a bad chance of making it through any FDA approval process because investors require ROI. It tends to make us sheep ponder conspiracy theories about the nature of these things. Just dont take our hard interrogative criticism personally, we are a neurologically compromised mob. At the same time, that doesnt mean we are wrong.
       
    29. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      @david c you forget that McKenna isn't an exception. Look at Dr Jennifer Gans, she has researched Mindfulness for tinnitus while she's selling an $800 internet treatment ("mindfulness based tinnitus stress reduction").

      It's not unusual that people make money off their own research projects. It doesn't mean McKenna is an evil conspirator.

      @David thank you, everyone sees you are a good guy who cares about us sufferers!!

      @JohnAdams you rock too

      @Contrast you rock too
       
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    30. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Well that is interesting as Dr Mckenna is listed as one of the main therapists at this practice http://tinnitus.org/
      which specifically practices tinnitus retraining therapy. Something else Dr Mckenna is not telling you perhaps??

      And equally importantly Dr Mckenna is about to be funded by the BTA to lead a research study on a particular therapy for tinnitus and insomnia which he also profits from financially. It is a clear conflict of interest for a researcher to lead a study about a therapy which he has a financial interest in validating.

      So Mr Stockdale. Have you done a Conflict of Interest test for Dr Mckenna for this study which the BTA is about to fund???
       

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