Why Is There Such a Stigma About Cognitive Behavioural Therapy?

[Tom Cnyc]

People much smarter than you think that hair cell regeneration will alleviate tinnitus. Why do you think Frequency Therapeutics are measuring THI in this trial? They just did a trial and they probably have some indication, if not direct knowledge that this is already the case. According to people like you, these geniuses that have discovered how to heal damage that has never happened before are wasting their time.

Dude. Music is my life. Do you think I wouldn't shout from the rooftops with glee if my hearing was perfect again?

I never said they're wasting their time. I'm THRILLED they're studying it.

My entire point is that the studies you're reading about are far from general avaiability and there is nothing wrong with coping mechanisms in the interim.

You also haven't answered my questions.

 

[TheDanishGirl]

When you say it didn't work, what did you expect it to do for you?

I expected it to teach me how to change my thought pattern, which I then expected would make my pain/suffering more manageable or bearable if you will.

 

[Tybs]

Is there really any evidence of #2? In my 4 years with tinnitus I've never seen it once represented as anything other than it is - a way to stand in the fire and become more comfortable with the heat.

Sadly, @Autumnly is right, at least where it concerns the Netherlands: there are quite some doctors here who act like CBT is a cure, and not a coping mechanism. I'm not sure if they actually believe it to be a cure, but they definitely talk in that way about it when they're out in public. Newspaper headlines copy it, and that's how it's being advertised (dutch link, sry).

If you read between the lines a bit, then you can understand that it's not a cure, but most people don't read accurately enough. I've had multiple people tell me about CBT when they found out about my T, presenting it as a cure. Every time I had to explain that it is a coping mechanism, and not a cure, which left them quite puzzled as they honestly thought it was a "fix" that would get rid of T.

Europe is now interested in using CBT as the standard tinnitus treatment. Though I'm definitely not against CBT itself, it's not hard to figure how this process will work out: most of Europe will assume that T has been taken care of and will invest time and money in other areas, while the real issue has not yet been dealt with. I'm sure this is the main fear that people have when it comes to CBT being promoted.

 

[Markku]

I'm not sure if it's really true that CBT (for tinnitus) gets that much funding, or that it somehow steals it away from other funding streams. From everything I've heard from researchers it does not appear cutting off funding for CBT automatically means increased funding for other research. It's more complicated than that.

If you look at the below listing of tinnitus studies being funded in the US:

http://grantome.com/search?q=tinnitus

You can see there's tons of non-psychological studies.

One thing that did in the past occur to me was that TRT had received $7.4M in funding. I talked about it here:

https://www.tinnitustalk.com/thread...training-therapy-where-are-the-results.13016/

But in retrospect it was good TRT was finally properly studied so that the decades-long debate of its efficacy could be put to rest. I'm not totally sure though if the price tag was reasonable or if it could have been done more cost effectively, but I'm not an expert at that.

With regards to CBT, I in major parts agree with what @Autumnly has posted. She is an awesome individual, always balanced and thoughtful, yet critical where it's due.

One thing to say though, I really dislike some people here being so vehemently against CBT that they are ready to go and harass and threaten CBT practitioners. Not naming names, but some of the CBT hate and how certain folk express it is so immature that I'm kind of embarrassed to even remotely be associated (by managing this community) with those kinds of actions. I strongly disapprove of any kind of harassment campaigns. It won't get anyone anywhere, but only hurt our common cause as people who matter start thinking we're nothing but some hooligans.

I actually think that we as a community need to behave better. It's an undisputed fact that CBT helps some people find ways to cope with the distress. And if someone comes here and tells their story, I don't want them to be treated like some sort of second-grade citizens for wanting to get better at any cost and then sharing that story in hopes of helping others. I'm so fed up seeing fellow tinnitus sufferers treating each other like garbage. It boggles the mind how some can't act civilly and respect another person's experiences without making a mockery of them.

I absolutely refuse our community to be a vehicle for CBT hate and deranged actions from those who can only see things in black and white. Above everything, people have to be able to feel safe here. To this end, the survey after our next one (which is a follow-up on our physical links survey, due to launch later this month) will be about tinnitus awareness, fundraising, and community atmosphere. We're going to find the issues in the community, what people feel happy about, and what are their concerns and suggestions for improvements. It's going to be candid. And we're going to listen to the people.

I think Tinnitus Hub, the organization behind Tinnitus Talk, needs to create a new refined mission statement. We don't support more funding going into research on CBT or psychological interventions. This needs to be made clear in our mission statement. We need to try to do better in terms of galvanizing the community; getting people do tasks that can help the cause. We can't expect most people to commit to volunteering several hours every week, so we need to come out with other options. Activism that doesn't require a lot of time, anyone can do, and something that motivates people. Easier said than done but we'll keep trying.

We must improve our moderation, and we look forward to adding some new moderators in 2020. If you are neutral, fair, have some history in the community, and aren't afraid of being strict where strictness is required, please PM me. Posts that make fun of people, or belittle their experiences must be acted on. Are we then less for free speech? I don't think so. It's just a matter of civility and decency. You can disagree, you can argue, you can think strongly, but it must be able to expressed in a way that doesn't drag the community spirit down. However, even if in some people's eyes we were less for free speech after this change, it is the cost that we must pay in order for the community to remain healthy, friendly, energetic and forward-looking. I will not allow this community to ever become something that doesn't represent our values. I have to say that over the past year or two I have been more involved in our other projects, and have rarely intervened in discussions, no matter how heated or inappropriate. And unfortunately, when I have had to intervene, it has sometimes come at a cost, I have been threatened, I have been disrespected. I feel sadness that some (albeit very few, thankfully) people are able to think that I would have anything else but the best intentions of our community and tinnitus sufferers in mind. I hope that those who have interacted with me over the years in various calls and meetings, were it patients, researchers, medical professionals, have been able to see that my heart really is set in this, and I will not rest until we have better treatments that factually reduce the loudness of tinnitus. I don't claim we've been perfect; but we have always tried the best we can. And we keep doing so.

But to be able to give our positive energy to these efforts, we need all of your help. The least everyone can do is try to think before submitting a post. "Would I talk like this to the person I'm writing to if they were in front of me?". That's a good first step.

Finally, we have come far. We have a few great volunteers. Considering our extremely limited resources, we've done and are engaged in quite a lot of projects. All of those who have been part of this can feel proud of themselves. Thank you.

I hope you will continue to support us.

Best wishes,
Markku

 

[GregCA]

I expected it to teach me how to change my thought pattern, which I then expected would make my pain/suffering more manageable or bearable if you will.

It sounds like you had reasonable expectations. Did it not help you at all with anxiety?

 

[Ed209]

I'm not sure if it's really true that CBT (for tinnitus) gets that much funding, or that it somehow steals it away from other funding streams. From everything I've heard from researchers it does not appear cutting off funding for CBT automatically means increased funding for other research. It's more complicated than that.

If you look at the below listing of tinnitus studies being funded in the US:

http://grantome.com/search?q=tinnitus

You can see there's tons of non-psychological studies.

One thing that did in the past occur to me was that TRT had received $7.4M in funding. I talked about it here:

https://www.tinnitustalk.com/thread...training-therapy-where-are-the-results.13016/

But in retrospect it was good TRT was finally properly studied so that the decades-long debate of its efficacy could be put to rest. I'm not totally sure though if the price tag was reasonable or if it could have been done more cost effectively, but I'm not an expert at that.

With regards CBT, I in major parts agree with what @Autumnly has posted. She is an awesome individual, always balanced and thoughtful, yet critical where it's due.

One thing to say though, I really dislike some people here being so vehemently against CBT that they are ready to go and harass and threaten CBT practitioners. Not naming names, but some of the CBT hate and how certain folk express it is so immature that I'm kind of embarrassed to even remotely be associated (by managing this community) with those kinds of actions. I strongly disapprove of any kind of harassment campaigns. It won't get anyone anywhere, but only hurt our common cause as people who matter start thinking we're nothing but some hooligans.

I actually think that we as a community need to behave better. It's an undisputed fact that CBT helps some people find ways to cope with the distress. And if someone comes here and tells their story, I don't want them to be treated like some sort of second-grade citizens for wanting to get better at any cost and then sharing that story in hopes of helping others. I'm so fed up seeing fellow tinnitus sufferers treating each other like garbage. It boggles the mind how some can't act civilly and respect another person's experiences without making a mockery of them.

I absolutely refuse our community to be a vehicle for CBT hate and deranged actions from those who can only see things in black and white. Above everything, people have to be able to feel safe here. To this end, the survey after our next one (which is a follow-up on our physical links survey, due to launch later this month) will be about tinnitus awareness, fundraising, and community atmosphere. We're going to find the issues in the community, what people feel happy about, and what are their concerns and suggestions for improvements. It's going to be candid. And we're going to listen to the people.

I think Tinnitus Hub, the organization behind Tinnitus Talk, needs to create a new refined mission statement. We don't support more funding going into research on CBT or psychological interventions. This needs to be made clear in our mission statement. We need to try to do better in terms of galvanizing the community; getting people do tasks that can help the cause. We can't expect most people to commit to volunteering several hours every week, so we need to come out with other options. Activism that doesn't require a lot of time, anyone can do, and something that motivates people. Easier said than done but we'll keep trying.

We must improve our moderation, and we look forward to adding some new moderators in 2020. If you are neutral, fair, have some history in the community, and aren't afraid of being strict where strictness is required, please PM me. Posts that make fun of people, or belittle their experiences must be acted on. Are we then less for free speech? I don't think so. It's just a matter of civility and decency. You can disagree, you can argue, you can think strongly, but it must be able to expressed in a way that doesn't drag the community spirit down. However, even if in some people's eyes we were less for free speech after this change, it is the cost that we must pay in order for the community to remain healthy, friendly, energetic and forward-looking. I will not allow this community to ever become something that doesn't represent our values. I have to say that over the past year or two I have been more involved in our other projects, and have rarely intervened in discussions, no matter how heated or inappropriate. And unfortunately, when I have had to intervene, it has sometimes come at a cost, I have been threatened, I have been disrespected. I feel sadness that some (albeit very few, thankfully) people are able to think that I would have anything else but the best intentions of our community and tinnitus sufferers in mind. I hope that those who have interacted with me over the years in various calls and meetings, were it patients, researchers, medical professionals, have been able to see that my heart really is set in this, and I will not rest until we have better treatments that factually reduce the loudness of tinnitus. I don't claim we've been perfect; but we have always tried the best we can. And we keep doing so.

But to be able to give our positive energy to these efforts, we need all of your help. The least everyone can do is try to think before submitting a post. "Would I talk like this to the person I'm writing to if they were in front of me?". That's a good first step.

Finally, we have come far. We have a few great volunteers. Considering our extremely limited resources, we've done and are engaged in quite a lot of projects. All of those who have been part of this can feel proud of themselves. Thank you.

I hope you will continue to support us.

Best wishes,
Markku

Well said, Markku, and much respect to you.

 

[Tom Cnyc]

Sadly, @Autumnly is right, at least where it concerns the Netherlands: there are quite some doctors here who act like CBT is a cure, and not a coping mechanism. I'm not sure if they actually believe it to be a cure, but they definitely talk in that way about it when they're out in public. Newspaper headlines copy it, and that's how it's being advertised (dutch link, sry).

If you read between the lines a bit, then you can understand that it's not a cure, but most people don't read accurately enough. I've had multiple people tell me about CBT when they found out about my T, presenting it as a cure. Every time I had to explain that it is a coping mechanism, and not a cure, which left them quite puzzled as they honestly thought it was a "fix" that would get rid of T.

Europe is now interested in using CBT as the standard tinnitus treatment. Though I'm definitely not against CBT itself, it's not hard to figure how this process will work out: most of Europe will assume that T has been taken care of and will invest time and money in other areas, while the real issue has not yet been dealt with. I'm sure this is the main fear that people have when it comes to CBT being promoted.

Journalists get things wrong all the time, and they are ad funded - so yes - things are sensationalized.

That's highly different than a CBT practicitioner advertising what they are selling as a tinnitus cure.

Google "kills cancer cells" and you'll see how many times we've cured cancer as per the newspapers. And we all know how that is going.

I'd also be rather shocked if any MD said CBT was a cure for anything. MDs are very cautious when using that word. "Effective treatment" - or "most effective treatment" - does not equal a cure.

 

[dan]

I just wonder how many of you positive people would fair with my tinnitus, oh I forgot we can not compare.

Sucks to have it bad lol.

 

[Tybs]

Effective treatment" - or "most effective treatment" - does not equal a cure.

So long as the people who determine the research goals understand this, then all is well

 

[Contrast]

Certain personality types will never be able to tolerate things like loud tinnitus and painful diseases. The CBT'ers are smart enough to realize this but won't admit it because they want to stay as the Gold standard for everything tinnitus and chronic pain.

I like it when the CBT'ers talk about different personality types responding differently because they are admitting not everyone manages tinnitus and painful diseases the same way. Some people with tinnitus and painful diseases will become obsessed with the concepts of resilience and mental flexibility and others will be suicides unless medical breakthrough's happen.

 

[Markku]

Well said, Markku, and much respect to you.

You too Ed. I will always respect you. One day we'll have a beer for sure.

For those who don't know, Ed has managed the following (not an exhaustive list):

• Spending a significant amount of his own money for Facebook ads to raise the profile of tinnitus research and encourage donations.
• Arranging and interviewing a well-known musician for the Tinnitus Talk Podcast (Tinnitus, The Musician's Curse? - CJ Wildheart).
• Organizing the Danny Boy memorial fundraiser (which got his family's blessing, and I can guarantee Danny Boy would have been grateful for the fundraiser even though he didn't like BTA, but the fact that donors could select the recipient of the funds is exactly what Danny Boy would have wanted).
• Helped a lot of people in dire situations, both in public and privately.

 

[Tom Cnyc]

Sucks to have it bad lol.

I used to have extremely severe tinnitus. These days I have mild tinnitus.

That said - I got back to living my life when it was still severe.

Meant to quote @jay777 btw

 

[david c]

The number of research studies done into CBT for tinnitus has been huge (I think BTA recently estimated 5000 studies), many of which have largely just duplicated previous studies. All of those studies required funding and that was funding which wasn't then available to other more productive lines of enquiry.

What surprises me the most is that some people seem to think CBT is wonderful but have a huge antipathy to TRT - which is pretty much just CBT with some white noise generators. Having tried both I can say that neither was particularly helpful. If you are not getting CBT or TRT for free then don't waste your money - spend it on a nice holiday instead.

 

[PeteJ]

You have no idea what struggles I face daily. I will not resort to your style and assumptions

You don't know what struggles Autumnly faces daily. Or others with severe tinnitus face.

CBT 'works' for a negligible amount of people - it's a mental health tool but is more effective for people who don't have tinnitus.

I can't believe the lack of common sense here.

 

[TheDanishGirl]

It sounds like you had reasonable expectations. Did it not help you at all with anxiety?

No, I don't know why, but it did not. My suffering is still bad to the point, where I contemplate if life is worth it every single day (my suffering is not only due to tinnitus and hyperacusis btw)

 

[PeteJ]

Ok here are the facts:
1. CBT can be helpful for some, not all.
2. It is misrepresented by many of its practitioners, which needs to stop.
3. There are promising treatments on the horizon that may actually treat or even cure tinnitus, therefore.
4. No more research funds should go into studying CBT.

Do 99% of the CBT-trained psychologists NOT have tinnitus? If so, how can they have a clue? Practically everyone has had depression or even fatigue at one time or another so they can have some idea of a severe case of it. I don't care if CBT is suggested but it's common sense to me to figure it probably won't help much if someone's tinnitus is severe or excessively intrusive.

 

[fishbone]

You don't know what struggles Autumnly faces daily. Or others with severe tinnitus face.

CBT 'works' for a negligible amount of people - it's a mental health tool but is more effective for people who don't have tinnitus.

I can't believe the lack of common sense here.

I won't, waste my time replying to you. You are on ignore

You come here to bash people and that's all you have shown.

 

[PeteJ]

I won't, waste my time replying to you. You are on ignore

You come here to bash people and that's all you have shown.

Well, you did for one reply. I was just making a point. Regardless of exceptions, it seems logical to me that CBT won't sufficiently help for most severe cases of tinnitus. I don't know why anyone would be offended with that conclusion. If it helps someone, great. It doesn't mean it's a universally successful tool for tinnitus.

I would highly recommend it for other conditions including depression and even chronic fatigue and maybe chronic pain depending where the pain is located. It's highly successful in the field of mental health.

But, mental health issues in people with tinnitus are symptoms of a serious (practically untreatable) physical condition. I don't have a good suggestion for finding a cure. Governments already neglect this condition. You can't even get disability for it when it's severe. How can you treat an invisible condition in which it is difficult to measure (the nature of it and severity)? I don't think CBT has any chance of being an answer but it can be tried but should not be relied on at all. It is more likely to help with more mild tinnitus.

 

[Kvothe]

CBT 'works' for a negligible amount of people

Do you have a source for this claim? I wouldn't know how to operationalize "negligible," but surely it would be less than 10%? That doesn't seem to match even the experience of this forum, and my sense is that those for whom cbt does not work are overrepresented here.

 

[PeteJ]

Do you have a source for this claim? I wouldn't know how to operationalize "negligible," but surely it would be less than 10%? That doesn't seem to match even the experience of this forum, and my sense is that those for whom cbt does not work are overrepresented here.

I think someone posted some data here?

I don't have any sources. I am considering common sense. Did CBT psychologists measure tinnitus severity? If I read data regarding tinnitus and there was no context regarding specifics in the nature of tinnitus, I disregard it out of hand.

 

[PeteJ]

If you google tinnitus and CBT, there's a lot of hits. I have to stop reading early on. So my first CBT chore is to stop reading so I don't react in a way that makes me angry.

 

[Kvothe]

I think someone posted some data here?

I don't have any sources. I am considering common sense. Did CBT psychologists measure tinnitus severity? If I read data regarding tinnitus and there was no context regarding specifics in the nature of tinnitus, I disregard it out of hand.

I'm going to admit that I haven't delved into the research on tinnitus the way others here have. But I do have a research background. Isn't the Tinnitus Handicap Inventory a measure of how debilitating a person's symptoms are? It seems like an easy thing to study, whether CBT lowers participant's THI scores.

 

[PeteJ]

I'm going to admit that I haven't delved into the research on tinnitus the way others here have. But I do have a research background. Isn't the Tinnitus Handicap Inventory a measure of how debilitating a person's symptoms are? It seems like an easy thing to study, whether CBT lowers participant's THI scores.

I don't know. Have you ever read a THI questionnaire? I have.

 

[Kvothe]

I don't know. Have you ever read a THI questionnaire? I have.

Yes. It seems to me a good measure of what CBT seeks to reduce (i.e. how obtrusive your experience of tinnitus is).

 

[Contrast]

CBT'ers literally say their therapy requires mental discipline and the right mindset to work.

translation: you have to think like me for it to work.

I hate how CBT is a universal way of thinking. I don't want to be told how to think about suffering, I just want to escape my suffering, rather it be through medical science advancing or suicide.

 

[linearb]

I hate how CBT is a universal way of thinking. I don't want to be told how to think about suffering I just want to escape my suffering rather it be through medical science advancing or suicide.

The practices that CBT borrows all its mechanical underpinnings from are mostly aimed at eradicating the experience of दुःख / suffering/pain/striving , not "telling you how to think about it". So, I think you're fundamentally misunderstanding what CBT is. Of course, at least a quarter of the people selling it as a service are probably equally in the dark, which doesn't help.

 

[GregCA]

No, I don't know why, but it did not. My suffering is still bad to the point, where I contemplate if life is worth it every single day (my suffering is not only due to tinnitus and hyperacusis btw)

Fair enough, but I want to point out that your second sentence is not directly linked to anxiety, in the sense that you could still have improved your anxiety and exhibit this behavior. Suicidal ideation doesn't require anxiety.

At any rate, I'm sorry that you didn't feel like it helped you. I am not here to argue about your assessment. I don't expect it to help everyone. You can legitimately be in the set of people who haven't seen any tangible benefit from it.

 

[just1morething]

I've got screaming loud tinnitus all over my brain and in both ears, I've got chronic pain that is absolutely excruciating that I'm on tramadol and co-codamol for, I've potentially got glaucoma, I have horrible scar tissue all across my chest which limits my movements quite significantly, and I'm ejaculating blood.

I still don't see why CBT has such a stigma. I think it's used mainly as a scapegoat so that people can air their frustrations. A lot of the arguments I've seen have nothing to do with CBT, in my opinion, but it's clear I'm in the minority. That's the main reason why I created this thread so that people could give their opinions as to why it's hated so much.

I often wonder how you are able to post with screaming tinnitus, horrible pain, and some of your other issues. I have screaming tinnitus today and spinal problems. I do have a lot of stressors going on right now that may or may not be related to my tinnitus. Being I had some mental disorders prior to my tinnitus that is a possibility.

Dishing out money for talk therapists doesn't sound too appealing to me. I guess if you have insurance and they are in-network it may not cost much, just a small co-pay I suppose. I'm sure the therapists will gladly take your money. You could just as well read some Kindle books relating to your condition, but maybe human interaction is needed in some cases. Maybe CBT talk therapy is free in the UK under your NHS? Totally different in the US. Individual health insurance is very high. Some people go without health insurance here hoping nothing serious happens to them potentially costing them hundreds of thousands of dollars.

I feel bad for you Ed that you have so many conditions you are dealing with. Tinnitus alone is bad enough for most people. I suppose this forum is good and bad. It's addicting and I still see a lot of arguments. I've heard some people mention forums being a time hog as well. I suppose it's good for venting if nothing else. I guess we are all looking for support and a way to manage our condition if possible until a possible cure is developed. That may be a long wait.

 

[fishbone]

they want to stay as the Gold standard for everything tinnitus and chronic pain.

There is no such a thing, as gold standards when it comes to pain and tinnitus. It wreaks hell on our body and mind. We just try to live with it and make our lives productive. It's a hard life, with daily planning needed and just enduring tormenting pain that can consume your soul. I can share many stories about my struggles, but I keep my posts positive and want to give people a glimpse of HOPE, even though at times I'm in HELL

This site needs hope, people need motivation. Tinnitus makes life very hard and the last thing I want to post is something that takes that hope away.

 

[Tybs]

I suppose this forum is good and bad. It's addicting and I still see a lot of arguments. I've heard some people mention forums being a time hog as well. I suppose it's good for venting if nothing else.

I'm quite sure this is one of the main reliefs people are looking for once in a while: when we feel bad, we need to let it out. Whenever I read a negative post, I assume the person in question is having a bad moment and finds a bit of escape in expressing it. IMO, this is a healthy thing to do, as long as people don't start getting personal with each other. On a bad day, I actually find some relief in reading similar "negative" stories as well, making most of this forum have a positive effect on me: just knowing that others share the pain helps a lot.