More About the BTA and Tinnitus

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

    1. 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 a fine example of a person who hears what they want and ignores anything that does not fit their narrative. You picked on part of a post, put your own definition on it and ignored the rest.

      As I explained but you chose to see your own version, deluded was in reference to your high ideas about TT, Hub and us being infiltrated. Not to the rest of your points. Hopefully that has sunk in now, I doubt I'll check back in here to confirm :)
       
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    2. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      I've made it clear that I wanted this thread to be about the BTA and its research decisions - that's what important to me. I only really mentioned TT/Hub in terms of my original post (which contained nothing abusive) being deleted - it was clear that the moderator had wanted to shut down criticism of the BTA. I've no involvement at all with plans for some kind of TT rival (as discussed by another person on this thread). What matters to me are research decisions which are going to damage 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.
       
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    3. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      @david c instead of complaining from the comfort of your couch behind a pseudonym, why not take action, file the freedom of information request, get the information, if you can't get the information you're looking for, take University College London Hospitals or McKenna or whoever to court and obtain the information that way if you're convinced of foul play. My 2 cents.
       
    4. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      @david c I don't think I can say anything that will change your opinion of the BTA's decision to commission UCLH to conduct the research, nor is there anything I can say to sway your opinion of Dr McKenna's standing. I'm not sure there's anything for either of us to gain by continuting to put point, to counterpoint, to counterpoint endlessly.

      By stange coincidence the BTA is also being asked the same questions via a Facebook account, it may be worthwile working together with them to put togther the freedom of information request.

      Hopefully we can both agree on the need for, "Well-funded, and properly conducted, biomedical research." And move on from there.
       
    5. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Again thank you for your reply. I notice that you don't agree with the first half of the quote: "The idea that MCBT/CBT is a treatment for tinnitus is dangerous and unhelpful."

      What ME sufferers found is that it was only when they successfully challenged the use of CBT for ME that they started to make real progress on the second part of the sentence: "Well-funded, and properly conducted, biomedical research." For one thing it meant that the funding that existed for ME research wasn't being diverted into research studies on the use of CBT for ME anymore - it could now be put towards well-funded properly conducted bio-medical research.

      The tinnitus community haven't yet challenged the use of MCBT/CBT for tinnitus. As a result they haven't yet made progress on getting the well-funded properly conducted bio-medical research.

      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
    6. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      I had a horrible acoustic trauma but according to the ENT "no hearing loss"
       
    7. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      Tell that to people who are on the verge of suicide, or who are already dead. Maybe Kristen Aber or Daniel Ballinger (sp?) would be alive with readily accessible talking therapy (in case you didn't know, talking therapy isn't readily accessible on the NHS).

      Talking therapy has its place but I agree most research funds are better placed in biomedical research.
       
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    8. AUTHOR
      AUTHOR
      david c

      david c Member

      Tinnitus Since:
      01/2012
      Actually, I'm in favour of the use of talking therapies (amongst other treatments) as a treatment for depression and other mental health conditions - we need more of them. What they aren't is a treatment for tinnitus and tinnitus charities need to be focusing their efforts on "the bio-medical research", not the "management strategies" the BTA is focusing exclusively on. I don't know if you are based in the UK or not annV but talking therapies are available via the NHS - though with long waiting-lists.

      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.
       
    9. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

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

      I won't have time to read your paper in its entirety until later, but just from scanning it as it came off the printer, I can see its a world of difference from Dr. Hoffer's paper, which doesn't offer any references to back up what he says.

      Having both qualitative and quantitative data about the tinnitus population in the UK to is something I sense you, BTA and Tinnitus Hub are very good at and that is a valuable strength. Thank you.

      TC
       
    10. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      @David the research that suggest tinnitus is caused directly by hearing loss also suggest it has a gateway mechanism relating to GABA or other factors.

      they are not just saying hearing loss itself causes tinnitus, other factors are at play.

      same reason why not all amputees don't have phantom pain or it varies is probably the same reason tinnitus fluxulates and varies and is not in all cases of hearing loss.
       
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    11. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      I have always found this to be an interesting topic. Phantom pain and tinnitus. My niece suffered phantom pain for years after having her arm amputated due to bone cancer. We talked about this a lot. The nerves are responding to a stimuli that is not there.
       
    12. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      it's the brain not the nerves, but fixing the original damage (regenerating hair cells or growing a new limb using stem cells) would probably solve the problem.
       
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    13. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      @David
      Is there some questionnaire that you have that can help us classify our particular type of tinnitus/hyperacusis/etc that can lead is into the right type of treatment and advise us on the proper types of future preventative measures and coping techniques?
       
    14. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      If people on this forum were more informed they would ask for cross discipline research and more funding for research on various conditions, but because most CBT's discourage people from caring about research they sit in the dark while researchers are given no incentive. CBT influence grows stronger in the community then bio-medical research
       
      Last edited: Sep 5, 2018
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    15. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      Does the BTA have an official model of tinnitus it is working around?
       
      • Good Question Good Question x 1
    16. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      @David
      I understand you dont have all day to sit around and answer our questions but, I am very interested in your opinion here:
       
    17. Dr. Jay Hobbs
      Studious

      Dr. Jay Hobbs Member Benefactor

      Location:
      central valley California
      Tinnitus Since:
      Blessed to not have...often
      Cause of Tinnitus:
      NA
      Hi John, I have been endeavoring to put something like this together for a couple years. I have landed on a compilation of questions that I call the Tinnitus Recovery score. To be certain, it is not exhaustive nor perfectly conclusive, but it has been very helpful for many. The solutions that it applies to are a Healthy Brain Lifestyle (Stress reduction (like CBT), Sleep, Diet, Fitness/Exercise/Posture), Trigger Point therapy (incl. Neck and TMJ care), and Auditory training (incl. ADT and notched music).
       
    18. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      What do you think about this?

      https://www.tinnitustalk.com/thread...are-what-worked-in-my-case.31031/#post-365653
       
    19. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Hectic day preparing for conference and reading our annual research review - out next week! Here's today's raft of responses...


      Thank you! The paper is not without it's flaws, which all are hopefully described in the methodology and discussion. This paper is a sister paper to the economics study I mentioned earlier. A lot of the stats in this study underpin the assumptions in the economic model.

      I understand that sorry in trying to reply briefly to a lot of points I'm not going into much detail here. I think it's understanding what some of those other factors are that is the challenege and what their interaction is with the hearing loss and why. We still don't have a way to accurately predict whether someone has tinnitus or not (without talking to them!) if you get what I mean. If we understood all of these contributing factors we might gain that and have attractive targets for durgs/therapeutics.

      Probabaly. I think restoring a limb is more likely than hair cells in some ways becuase of how inaccessible the cochlear is, and how do you do it - connect the right haircells to the right nerve endings, etc? Assuming not all are damaged. Huge (fascinating) challenges.

      Not at the moment, as there's serveral steps along that journey that are missing;
      1. effective subtyping of tinnitus
      then...
      2. understanding the best therapy for each subtype
      I've just read our next Annual Research Review - to be launched at our conference next week, and we have chapters on subtyping, looking at how this could be achieved.

      Depends what you mean by community. There's a lot more basic science research than CBT. Basic science also gets more funding then CBT research (rightly so). There is a bit of a schism in the tinnitus research community and it tends to be between basic science/imaging and clinical research. When research conferences run there's often parallell sessions split along these lines. I think if you did a tally of published papers, or papers presented at tinnitus research conferences the number of CBT papers presented/published would be significantly less than the number of biomedical science papers.

      If you mean by people who deliver tinnitus services then yes. They will deliver evidence based treatments (hopefully) - currently CBT is tamongst those. Assuming that you mean Audiologists, as they tend to deliver most tinnitus management, they are a long way removed from biomedical research, as Audiologists don't traditionally carry this out - drug development isn't their field - they typically can't prescribe drugs. It is scientists and doctors (ENTs in our case) that will undertake research at this level typically. There are some Audiologists involved in biomedical research but they are the exception rather than the rule.

      Apologies if I misinterepted the question.


      No! We discuss/debate models a lot, as I'm sure happens here. My favourite current theory/model is the one developed by Dr William Sedley (Full disclosure, he's a member of the BTA PAC and the nephew of our former President, Sir Stephen Sedley) which is here; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5152595/
      I like it as it unifies a number of other models and makes sense to me as to why we keep finding more and more areas of the brian involved in the tinnitus percept. Dr Sedley's paper here; https://www.sciencedirect.com/science/article/pii/S096098221500278X is the most important and interesting tinnitus paper of recent times, IMO. Dr Sedley is working on objective measures of tinnitus and proving his model currently.

      BUT I often get 15 minutes to present what tinnitus is what to do about it, etc so for simplicity I present the 'box' model, first published in 'Living with tinnitus and Hyperacusis,' and is included in www.takeontinnitus.co.uk PLUS I don't have huge confidence to present Dr Sedleys model due to the complexities, and I'm not a neuroscientist! I like how the 'box' model fits with the Eggemont and Baguley theory that tinnitus has an 'ignition' site (anywhere in the auditory pathway) which is then 'maintained,' (deeper in the auditory system).

      Others here have developed their own ways of explaining tinnitus, or prefer other models such as the cognitive-behavioural model - which has some efficacy behind it.

      We haven't promoted one particular model, as without any having a thorough evidence base, don't feel in a position to do so. If we have time we tend to present a few and allow people to make their own minds up - a bit like I've done here I suppose.

      So sorry - a long winded way to say 'no'!

      Great this worked for Conan but anecdote isn't evidence. I'm not medically qualified so wouldn't feel in a position to comment on specific cases like this. Worthy of forwarding onto the drug company as a potential route for them to investigate though and see if they are interested in following it up.
       
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    20. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      This just trashed my opinion of you and the BTA. Someone is claiming to be cured of tinnitus and you just shrug it off. I feel like this a is great insight to the mentality of your organization. If you were really trying to help people you would immediately investigate this. Instead you just say the drug company SHOULD do it it themselves. That drug is not specifically made for tinnitus, and it was 2 drugs and I highly doubt that the people that make them camp out on this site like you do. Your organization is called THE BRITISH TINNITUS ASSOCIATION. I think you're just a front to push TRT, CBT, etc and have plenty of ability to research viable treatments, but ZERO INTEREST. You need to rename yourselves the British TRT Association.

      The first thing you should do is interview that user that is claiming success, determine if his account is viable, then reach out to sufferers you know with a similar cause and have them try the supplements or take your funding to set up a study. BUT NO! you push it off on the drug companies. I don't think you're trying to help anyone but yourselves and maintain a niche. :mad:
       
    21. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      There's a lot of bio-tech out to find treatments from SNHL.

      Hough Ear institute, Frequency Therapeutics, Hearing Health Foundation, Decibel Therapeutics, Otonomy and Novartis are already focusing on hearing loss restoration are we going to assume they all will fail?
       
      • Optimistic Optimistic x 1
    22. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
    23. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Really sorry you feel that way, it wasn't my intention to shrug it off at all. I didn't read the post in detail, or realise it was more than one drug the user was taking. The drugs companies are best placed to take up these trials if t is a solo drug, as they have everything in place and the financial interest to do so. I didn't realise it was a compound or a supplement - will read in more detail before I post on here in the future. I was trying to answer as many questions as possible rapidly, will take more care in the future.
       
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    24. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      char·la·tan
      ˈSHärlədən,ˈSHärlətn/Submit
      noun
      a person falsely claiming to have a special knowledge or skill; a fraud.
      synonyms: quack, sham, fraud, fake, impostor, hoaxer, cheat, deceiver, double-dealer, swindler, fraudster, mountebank; More
       
    25. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Not at all, was trying to present a personal opinon for discussion. I have no more knowledge of success or the failure of these then anyone else on here.
       
    26. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Because it doesnt fit your niche. You have no interest. Someone claims that they cured their tinnitus and instead of taking 30 seconds of your life to read the post, and may another few minutes to reach out to the user you dont.

      Here is an analogy of what you are.
      Little babies in the desert are starving, you dont know where any food is, but you take the title of the Desert Hunger Association and counsel people on how to deal with their hunger. Someone comes along and says, "I found some food" and you turn a blind eye and act as if you dont have the time to even pay attention to their claim and go right back to counseling the starving babies instead of trying to feed them. I'm sorry but I sincerely believe that your organization is detrimental to finding remedies for this HORRIBLE CONDITION.

      I'm pretty mad about this.

      A few other users on this site know far more about this disease than the BTA. Maybe My Posting Place is more suitable to be an authority on this condition.
       
    27. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      John, NAC isn’t going to cure most people’s tinnitus. I’ve been taking it for 3 years and it’ hasnt reduced my noise at all and it hasn’t worked for the vast majority here either. NAC is just an antioxidant and is more for prevention than cure, and even that is debatable. There are loads of threads about NAC, just look them up.

      A pharmaceutical company would think you’re crazy if you went to them with this. What do you expect the BTA to do exactly?

      Eating antioxidant rich foods would likely be just as effective. And you could add magnesium and zinc to that list as well.

      L-carnatine is no different. And if you’re going by one mans testimony then I can show you another thread where the author claimed it made his T worse.
       
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    28. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Right, not all tinnitus is the same. That user reported that they took some drug and it started their tinnitus. Is the BTA or ATA compiling research on this and directing people to at least try these things? Nope. Have they secretly decided there is no possible cure? Do they even know or care to know what causes different kinds of tinnitus? Doesnt look like it. Looks to me like a dead end into TRT and CBT. The summary on McKennas TRT book at tinnitus.org has the outrageous audacity to label support communities as "phobic training camps". what the hell does that mean? We arent phobic of TRT at all. And I havent gone through any training to disagree with their methods. Those are the words of fakers that know they are fakers. Extremely insulting. If anyone is phobic, they are because they know we think they are useless and they're afraid of our opinions.
       
      • Agree Agree x 1
    29. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Yes - we have a 'cure map' that's been posted elsewhere on this site. We list supplements and diuretics within that map, so yes, they do feature. We don't recommend people try things such as these because there is no evidence they work and may do damage. Certainly haven't decided there is no cure, although as I've already said I think there will be more than one cure for different types of tinnitus.

      We don't know - no one does. It is a constant challenge I am putting ot the research community how do we effectively subtype tinnitus, identify different types of tinnitus.

      It's not McKenna's book (it's written by Jastreboff and Hazell) but agree with your point that this is insulting and damaging. We support over 100 tinnitus support groups and reject this view of tinnitus groups. I think the BTA is also included in that viewpoint.

      Wouldn't deny that. We're not medical or research experts nor do we fully understand all of the research out there. I think I've made this clear but apologies if not. We don't claim to be experts across all areas of research. I understand enough of it to know there's lots I don't understand (if that makes sense). I try and understand methodology of research so I can come to an assessment of what's out there.

      Apologies once again for not properly researching your original question, I'll take more time before replying in the future.
       
    30. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      It's okay I'm just having a bad spike today and I'm wandering a labyrinth of sorrow and watching my life spiral down the drain and its fuckin flipping me out.
       
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