More About the BTA and Tinnitus

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

    1. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      I'm only human. I'm just riled up by the way the world works. Like that article you posted about one shot cures not being financially viable for investors. I am so sad that it is even like that. It gives me horrible mental imagery of that pyramid on the back of the almighty dollar. Like that is a symbolic representation of the temple of the destruction of our souls.
       
    2. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      You don't say who has funded Dr Gans research, but the BTA has funded Dr Mckenna's research. In both cases there is a clear financial conflict of interest. Researchers with a financial interest to validate a particular therapy make for bad research. I didn't say that Dr Mckenna was an "evil conspirator" - simply someone with a therapy (or two!) to flog and a desire to get the BTA - and Tinnitus Hub (currently promoting a fundraising for BTA research) to help him sell it.
       
    3. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @david c you are being so unreasonable about the BTA and @David who has gone out of his way to respond to you.

      Not to mention the continued remarks about Tinnitus Hub and the BTA as if it is a conspiracy of some sort on the part of Dr. McKenna who I really know nothing about.

      I get tired of these unwarranted accusations that Tinnitus Talk/Tinnitus Hub are for profit organizations that the owners will somehow make millions from and retire early!!

      People should be supporting these efforts instead of trying to destroy reputations and intentions.

      But... This is the way it is when a newer group is formed within the tinnitus community.
       
      • Agree Agree x 2
    4. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      @david c what about those tinnitus sufferers who say McKenna has saved their lives? That means nothing to you?
       
      • Good Question Good Question x 2
    5. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I think the BTA's involvement with 'how to cope' and 'preventive' awareness is most productive for their budget size. There's 1000's of things that can cause tinnitus where many may include hidden infection where only a specific drug might help along with other treatment. Many conditions are in our mouths.

      I support the BTA.
       
      • Agree Agree x 4
    6. Consider

      Consider Member

      Tinnitus Since:
      08/2016
      Cause of Tinnitus:
      Fan
      If anything, people should take a critical look at Action on Hearing Loss. They recently moved their offices to the centre of London. The overhead is astronomical. What a waste of people's money.

      Do you support the ATA too? Where are you located?
       
    7. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      Besides the BTA, I support animal, children and elder well being. I also support burn centers for children and several crisis associations. My wife supports children abuse associations. I don't give a dime to the trauma medical center hospital where I worked for many years or their association of other hospitals because they don't know a thing about tinnitus. I just collect my pension from them.
       
    8. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Seriously mate, you're a bit deluded. Step into the real world for a moment.

      I am sat in my spare room, on a laptop, working very hard at the day job and doing what I can in my spare time as a volunteer to try and make whatever difference I can. Sniping from the sidelines, hidden behind a keyboard is doing sweet FA for anyone.

      We're a small group of people, all volunteers, totally independent in the way we approach things and trying to be balanced. We're desperate for a cure, I have had a 2 day spike at ridiculous loudness that has seriously tested the resolve, I am not content to live with this.

      I personally believe in cooperation, working together on things that can matter. We have developed ties to tinnitus organisations and we will continue to do so, broadening the cooperation globally where we can. That does not compromise our position. We do what we believe in, if we didn't buy into it then we wouldn't do it.

      I don't see the point in your approach, rubbishing everything that doesn't fit a personal agenda and refusing to understand that even though you may not like them that some things are very helpful for some people.

      The BTA event is an expo of things out there that may help people. It looks good to me and to others that are lifting a finger to help out. It's not about a cure but about finding help in management, that looks like a benefit to us.

      People pay for tickets if they see value, if they don't then they don't go. Simple economics. I don't know the details of the costs but these things aren't cheap to host. If it was free you would be moaning that the hard earned money donated to the BTA was being wasted on it instead of going into cure research.
       
      • Winner Winner x 14
      • Hug Hug x 1
    9. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @David,
      Thank you again coming on Tinnitus Talk and answering questions.
      The BTA do outstanding work and have an amazing team too...
      love glynis

      @Steve,
      Well said.
      love glynis
       
      • Agree Agree x 9
      • Like Like x 1
    10. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      So let me explain why the questions I am asking David Stockdale are important

      I asked David Stockdale about the recent MCBT study for tinnitus and whether a conflict of interest test was done for Laurence Mckenna - who financially profits from selling this therapy privately.
      David Stockdale said a Conflict of Interest test wasn't done.

      I asked David Stockdale whether any conflict of interest test has been done for the new study on imsomnia and tinnitus led by Laurence Mckenna - who also profits from selling this therapy privately.
      David Stockdale hasn't replied (yet) to this questions.

      And why do those questions matter? Because researchers with a financial incentive to validate a particular therapy are known to manipulate the data to confirm that therapy. That was exactly what happened in the flawed Lancet study of CBT for ME as I have shown in the links previously.

      That CBT study led to an adverse impact on thousands of patients with ME. The many patients with ME who were made to do CBT as a result of that study and didn't benefit from it were told - "you should be benefiting from it because the research shows it benefits people - so the problem isn't the therapy - it's you"
      https://www.change.org/p/nice-stop-harming-me-cfs-patients-take-cbt-get-out-of-me-cfs-guidelines-now

      Exactly the same will happen to tinnitus patients if we don't challenge these conflict of interests now.

      Oh and btw - describing people as "deluded" is exactly the same sort of abuse as the ME patients had to take.
       
    11. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      So had a look around on this, there is a systematic review (highest level of evidence possible) on Benzodiazepines, which discusses Clonazepam here; https://www.cambridge.org/core/jour...matic-review/106913A5B46A01BCD64A5C5E595FB671

      Main issue is blinding the trials from what I can figure, as if you're on Clonazepam you know about it. It is also a little academic as they are rarely prescribed in the UK due to their addictive properties, as @annV correctly stated. You'd need a drug with a much better safety profile for tinnitus, especially if it acts as a suppressant (as I think Benzodiazepines do) as you'd want something with a strong long term safety profile.

      The trial quoted was unblinded, so everyone knew what was being administered, which will likely skew the results somewhat.


      This research is already underway and is currently recruiting; https://www.tinnitus.org.uk/Blog/tinnitus-and-insomnia-study
      I've answered on the process of how the BTA contracts research already in this strand and you've also already passed judgement on that.

      I'll do everything to try and demonstrate there is no conspiracy - certainly not involving the BTA. There is a passionate and dedicated tinnitus community out there of researchers and professionals doing their best to help people manage tinnitus as well as they possibly can with what we have now, whilst seeking to develop improved treatments and yes, a cure. Not taking anything too personally (so far!) and believe once this thread got rolling there's been some useful discussion, debate and food for thought.
       
      • Like Like x 7
      • Informative Informative x 1
    12. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      You're deluded in the web you weave around what you think we are and what you think we do. I wasn't commenting on the rest of your posts. I speak plainly, I generally tone myself down for the internet and consider the written word. Believe me when I say I'm being relatively polite, this is not abusive.

      I disagree with what you write regarding tinnitus patients being sent the same way as the ME story you linked, we are in a position where we talk to researchers and attend conferences so we have first hand experience - nobody other than the scam products claim to have the solution for everyone. McKenna said openly in the last talk I saw him do that it only benefits a section of patients, where do you come by the notion that he says otherwise or that we will all have to believe this is the salvation?

      I would love for all researchers to be altruists, but I have to plant my feet on planet earth and understand the economics of the situation. I don't go to work for fun, I have to get paid and pay the bills, I imagine the same of them. We do know that there are a disproportionate amount of researchers with tinnitus so I actually believe there is a level of altruism to the work in their case, certainly a keen self-interest. Regardless they are still under pressure to deliver funding for their institutions. Some fault can be traceable to the major funders, giving a narrow interpretation of what constitutes quality research towards the cure.

      I've seen plenty of criticism from you but I haven't seen anything constructive. If it's all wrong then how do you propose it to be fixed?
       
      • Agree Agree x 6
      • Like Like x 2
    13. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Sorry m8. I can just take your word for it, however, we live on earth and there are evil ass people all around with horrible motives and others that are just idiots. There are major shenanigans going on in all of the medical professions and especially big pharma. Until the end of this age, I will always believe there is conspiracy afoot, because I believe in the existence of the Devil, I think he runs this world, and truth and healing come from God, and the Devil is going to obfuscate that until he is taken out of the way. It's Christianity 101.
      paul6.jpg
       
    14. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      According to Michael Hoffer's article in the latest issue of Tinnitus Today, benzodiazepines are the most commonly prescribed drug in the treatment of tinnitus. They are prescribed for their ability to modify the precept by reducing anxiety. Prescribing them for anxiety, and not tinnitus specifically, keeps the script within current label indications.

      Prescribing Klonopin for tinnitus reduction, i.e. lowering the volume, would be outside of current label indications and would require that a regulatory path be followed to obtain that label indication. In the US, Roche markets branded Clonazepam as Klonopin, so they hold the IND and NDA. If Roche markets branded Clonazepam in the UK, they will have made the appropriate filings with MHRA and will have the global safety database. If Roche were convinced the opportunity was big enough they might take on a new label indication- but without an objective measure and guidelines for the design of clinical trials for testing drugs for the treatment of tinnitus??? There may be ways to study the drug for an off-label use, and Roche may tell you a little about that, but they cannot be seen as promoting off-label use. That's a US/FDA perspective but the situation in the UK is likely to be similar with the MHRA. It would be wise to get a regulatory opinion from a UK regulatory expert.

      All drugs have side effects. In the US, benzodiazepines are a controlled substance, meaning there is concern about addiction and abuse. Side effects tend to be dose dependent, so you would want to know the minimum effective dose for treating tinnitus, which may mean more studies. Also, some on this forum use Klonopin only intermittently in which case, an alternate dosing schedule could minimize side effects and could be explored. Finally, Klonopin is used to control seizures so Roche is likely to have safety data on long term use.

      Personally, I don't thing the "climate" for benzodiazepines is very good in the US right now, we have a problem with opioid addition which might have a halo effect on other controlled substances. Plus, I believe there is some recent data which associates benzos with memory issues.

      Kind Regards,
      TC
       
      • Informative Informative x 1
    15. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Steve you've called me "deluded" and are apparently very keen on plain-speaking - so I don't expect you'll mind when I say that (from the evidence of this thread) you don't seem particularly intelligent and that seems to be your problem in terms of your lack of comprehension of the issues in question.

      Take for example your argument that "researchers shouldn't have to work for nothing - they should be paid."
      Well, Doh! Talk about stating the obvious. What we are discussing here is something completely different - a conflict of interest when a researcher has a direct financial interest in validating a particular therapy (because they benefit from selling that therapy).
      That's something which normally makes for bad research and which any effective research ethics committee would actively seek to prevent.

      You say that you disagree about the link with the ME CBT research scandal. But you haven't given a single reason why you think it is different.
      I've given plenty of similarities - researchers with conflicts of interest; hard to treat health conditions for which CBT/mindfulness professionals are anxious to get their share of pounds/dollars for; research apparently supported or published by reputable organisations (such as the Lancet in the case of the ME CBT study).
      So what are the big differences then?

      And in terms of not offering any positive ideas I've given two examples of research that I would welcome - one for sufferers of long-term chronic tinnitus using clonazepam and one for recent sufferers of acute tinnitus using HBOT. And I'd be more than happy to contribute money towards any organisation which was planning to do those studies.

      What the ME sufferers found was that once they successfully challenged the flawed CBT research which was having such a negative impact on their lives and taking up such a large chunk of ME research money, that was when they started making real progress to an understanding of their condition. Exactly the same will happen for tinnitus.
       
    16. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      It's always dangerous when someone believes they are more intelligent than they are isn't it?

      Apologies for misinterpreting what you had written, I don't have the free time to read all of your musings as I have a business to run outside of all of this. I agree of course that validation should be independent, but are we not talking about results being presented rather than therapeutic validation?

      I'll use the time I have more productively in the future, engaging with higher forms is clearly too taxing for me.
       
      • Funny Funny x 3
    17. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

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

      Actually to me things have spiraled down a bit, but I do think @david c has hit on a very interesting issue-- what agency regulates psychological treatments, clinical testing of psychological treatments and claims based on those studies?

      If MBCT were a drug or medical device, there would be plenty of guidance from MHRA about investigator conflict of interest, financial disclosure and claim support. In the US, FDA guidance on investigator conflict of interest represents 20+ years of evolution. Twenty years ago there actually were investigators who did studies for drug companies and were paid with shares of company stock. The investigators were completely naive. No one even recognized the conflict of interest until the drugs were introduced into the market and the value of the shares skyrocketed.

      I'm genuinely interested and trying to look at this objectively . It's not an attempt to instigate in-fighting, but I do respect @david c for sticking to his convictions.

      Kind regards,
      TC
       
      • Like Like x 1
    18. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      This thread and debate could go on for ages.

      @David has answered questions and also said in the above quoted post that he will do everything to demonstrate that there is no conspiracy involving the BTA.

      Thank you @David, I'm sure there isn't any conspiracies at all.

      love glynis
       
      • Agree Agree x 1
    19. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      @David, what do you think about this: Christians believe in a vastly different cosmology, basic reality, than non-Christians. Do you have a way to filter Christian patients from non-Christian patients? Are there Christians at the BTA? I ask this because I have found that meditating of fundamental Biblical teachings about the nature of life, death, and eternity has given me a type of habituation that I'm absolutely positive is vastly superior to anything CBT or TRT can offer, to a Christian. What say you my friend of this?
       
    20. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      There are steps that can be taken in the design and conduct of a drug study which can help minimize or avoid the skew, especially if the outcome measure is objective.

      TC
       
    21. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      So in terms of the financial conflict of interest in Dr Mckenna's research the BTA decided not to do a Conflict of Interest test itself. You decided to contract that out to another organisation. But you don't know if that organisation did one or what the result was. Fair Summary?

      It's really, really important to me Mr Stockdale that CBT/MCBT isn't prescribed as a treatment for tinnitus due to this dodgy research in the same way that CBT was prescribed as an appropriate treatment for ME sufferers. That did huge damage to the ME community - I don't want that to happen to the Tinnitus community.

      I urge you and everyone else to read about that: here's an article from the I newspaper in the UK:

      https://inews.co.uk/opinion/comment...-than-it-would-cancer-its-a-physical-illness/

      And here's a key extract from the article:
      But the idea that CBT is a treatment for ME itself is dangerous and unhelpful. “What ME-sufferers in the UK really need is not talking therapy but well-funded, and properly conducted, biomedical research.

      That's what we need to understand: the idea that CBT is a treatment for tinnitus is dangerous and unhelpful. What tinnitus sufferers in the UK really need is not talking therapy but well-funded, and properly conducted, biomedical research.

      So what I want to do is to send a FOI request (freedom of Information) request to the organisation which apparently did the ethics approval for Dr Mckenna's BTA funded tinnitus research so that we can see whether a full Conflict of Interest test was done and what the result was.

      All you need to do Mr Stockdale is to tell me which that institution was and the contact details for them and I will lodge the Freedom of Information request for the full ethics form for this research.

      I wait for your reply.
       
      • Like Like x 1
    22. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Yes it was pretty clear from the fact that you didn't appear to have understood the difference between a researcher being paid for the research they do (good) and a researcher having a financial bias to validate a particular theory or therapy (bad) that either you were a bit slow, or you hadn't read much if any of the argument I'd made. (or possibly both).

      Of course btw you've no obligation to read my posts and you no doubt have many other things to do, but maybe if you haven't read them you shouldn't be writing posts calling me deluded.
       
      • Agree Agree x 1
      • Funny Funny x 1
    23. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      Do ENT's do a public disservice by not recognizing hidden hearing loss?

      It's not only the public who are in the dark about the known mechanisms of tinnitus.

      upload_2018-9-3_21-41-36.png

      Is this a theory, a working hypothesis or just a random clueless guess?
       
      • Good Question Good Question x 2
    24. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      you have honest concerns. this isn't a reddit on flat earthing. you're also a sufferer, like the rest of us.

      I appreciate your sentiments. the world at large, humanity, not excluding the medical community does seem pretty shifty in their methods.

      I have my own opinions as well, witch can also be unpopular.
       
    25. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      @david c reading your posts about McKenna, wondering, why don't you go meet the man himself at the BTA event? Would you not dare to talk to him face to face?
       
    26. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Hi - jumping on here in my lunchbreak to see what I can add to the current discussions - apologies if I miss your specific question, please remind me if I have, so...

      Thanks for the heads up, not read it yet but will do now. Interestingly a paper I worked on showed Benzo's prescribed but nowhere no at the same volume. Paper here; https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-018-2914-3

      Bang on - this is a major barrier for pharma investment in tinnitus and to an extent hearing loss trails currently. Will see if i can find an in at Roche and discuss. Although still think the big issues will be the safety profile from what I've read. As you also say though it will be challenging to repurpose given where the thinking is around this class of drugs.

      There is no overarching body as far as I know - as there isn't for most scientific research. It is self-policing via ethics committees and where the study is published - as it will be peer reviewed. You can run studies through more onerous oversight - such as the Clinical Trials Units in the UK but the cost is huge. Misrepresenting or misinterpreting data is ruinous career-wise if/when it gets uncovered - as it is for the insitution that undertook the research (gave ethical consent) and the publishing body - so they do provide useful oversight - could certainly be improved and feels stuck in another era at times - especially acedemic publication (personal view). I think the bigger issue in tinnitus research is poor methodology.

      I don't know of trials that control by/for religion. Delighted it works for you - always something I've sought but never found.

      I've already given you the insitution; ULCH. The full address is; University College London Hospitals NHS Foundation Trust, 250 Euston Road, London, NW1 2PG

      I hope you get the reassurance you need.

      I struggle with this a bit as it's an unprovable hypothesis. Everyone has some degree of hearing loss, in effect you start losing hearing from birth and certainly a degree of hearing loss will be present in all adults. Yet not all of these adults acquire tinnitus. Work needs to be done (IMO) to answer some of the paradoxes around this. The more I understand about hearing tests the more i understand about quite what an ineact measure they are too.
       
      • Informative Informative x 2
    27. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      But actually it isn't reassurance just for myself - but for the whole tinnitus community. Financial Conflicts of Interests leading to bias in medical research and flawed data can have devastating outcomes - the most noticeable being the recent flawed research by Andrew Wakefield falsely linking the MMR vaccine with autism:

      https://www.nhs.uk/news/medical-practice/ruling-on-doctor-in-mmr-scare/

      That false link lead to a sharp decline in vaccination rates and a spike in measles cases which is still ongoing.

      Please note the sentence in the link above: "Wakefield also failed to disclose conflicts of interest to The Lancet medical journal, which in 1998 published the research paper that sparked the MMR scare."

      Dr Mckenna has lied to you Mr Stockdale about the sources of his incomes from private practice. He told you for example that he did not practise TRT - yet the following link http://tinnitus.org/ shows that he practises at a private practice exclusively offering TRT. Do you not find that in the least bit concerning?

      I note Mr Stockdale that you haven't offered an email address or any contact link at the University College Hospitals in terms of sending in a FOI request. I guess you don't want it made too easy to uncover the truth.
       
    28. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      If Dr Mckenna would like to join this discussion - and there's absolutely nothing stopping him - then I'd love to ask him these questions. I won't be available in terms of going to the Expo and even if I was I don't believe in subsidising false treatments which are going to harm the tinnitus community:

      The idea that MCBT/CBT is a treatment for tinnitus is dangerous and unhelpful. What tinnitus sufferers in the UK really need is not talking therapy but well-funded, and properly conducted, biomedical research.
       
      • Agree Agree x 1
    29. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      • Like Like x 1
    30. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Thanks for the link. However, I'm under no illusions about how easy it's going to be. ME Sufferers had to go to court to force the disclosure of the false data which was behind the supposedly reputable Lancet study into the use of CBT for ME.

      You didn't answer the question about whether you were concerned that Dr Mckenna had not told you the truth about his TRT connections. I guess you don't really care?

      The idea that MCBT/CBT is a treatment for tinnitus is dangerous and unhelpful. What tinnitus sufferers in the UK really need is not talking therapy but well-funded, and properly conducted, biomedical research.
       

Share This Page

Loading...