I think the frustration against CBT on Tinnitus Talk is often something to do with… You're young, you get a shitty disorder, and then you see that the research is just constantly about how to deal with the disease and the concern is that this is to the detriment of original biological research getting to the root cause of the disease.
This is not unique to tinnitus but can be seen in many conditions. I remember feeling very very passionately about this when I first got ill with another condition age 20. The narrative around the condition seems to be – the whole problem was a person's reaction to it, when in fact there was so little biological research into the root cause. That type of research almost didn't exist. I didn't shut up about my frustration with that for years.
As an older person, I can see the value of psychological more easily-so many medical conditions are very intractable and all we are left with is how we deal with them and this is actually very very important. We only get one life. Most of these conditions will not go away. How we deal with them is important.
But the remaining concern with CBT type research for so many chronic health conditions is it diverts the focus from original biological research. This is a truly valid concern. The researchers are clearly going for the easy, low hanging fruit and producing papers on the psychological effects. The research system is set up such that researchers are awarded for the number of papers they do. Doing original research on potential biological mechanisms behind many disorders is much, much, much harder.
So from that point of view I do understand the anger and frustration of the younger and not so young people here against CBT and psychological focus in tinnitus.
I think people here are right to pressure the BTA et cetera to stop their excessive focus on psychological and CBT type approaches. That political pressure, that patient frustration and passion, is needed with many disorders – the ME/CFS people have campaigned successfully to get increased biological research into their disorder.
I agree with you. Especially regarding the BTA focussing on curative research. As far as other conditions go, I can relate to you on that one as well. I was part of another health forum for a long time (a long time ago) and the same was true there. I went to see many Drs when I was about 15 and they all told me that my symptoms regarding my chest were all in my head. This related to the fact that I could feel my chest wall crushing against my heart as it beat and could hear it squelching up my throat as well. Added to this was the fact that I couldn't fully expand my lungs so I had many physical symptoms that were dismissed. As soon as the internet became more popular I started to do a load of research on it and found a lot of what I was told was complete nonsense. Today, there has been much more research conducted that basically vindicates what I said all along. They now know that it's all true and that those physical symptoms are very real. One of the options given to me was counselling but I wanted the physical problems fixed because there were procedures that existed that could do that. I went private and was offered the surgery via the NHS but it wasn't the procedure I most wanted, but I still went ahead with it. I've had loads of health problems since so I sincerely understand people's frustrations, but with tinnitus, there isn't a physical fix yet. We can only work on our coping mechanisms in order to live for today.
CBT has been around since the 1960's so what people are really frustrated with is the current state of tinnitus research, which I understand. What I don't really understand is how the current stigma surrounding CBT helps anyone who is suffering right now who may otherwise be helped by it. It seems counterintuitive to put people off. As a really bleak example, I'd say it's better to try CBT, drugs, whatever you can, before you start thinking about suicide.