Stepped-Care CBT Treatment from the University of Maastricht

A multidisciplinary European guideline for tinnitus: diagnostics, assessment, and treatment

Haven't read everything yet but so far they don't mention tinnitus loudness, intrusiveness, reactivity or pain or loudness hyperacusis even once while talking about habituation. It's all just about not seeing the tinnitus as harmful and dangerous and you'll be fine. This is bad. This is really bad.
  • Monitoring tinnitus
    If life is planned around tinnitus it is given much importance, and this prevents the patient adapting to it. Simply put, patients should not avoid activities they think may make their tinnitus worse. Patients should not be putting their life on hold. Tinnitus does not have to control their life. Each time the patient tries to "monitor" their tinnitus they are guiding their attention to it; there is, however, no evidence that this would make tinnitus worse. They should be advised to engage in normal activities when they notice themselves trying to monitor their tinnitus.
How can they be allowed to write something like this? How? Millions of people are suffering severely and these people are allowed to say that it's not the tinnitus it's just those people's perception of it?

Edit: I just wanted to say, I had hope for this paper. A part of me had truly hoped they'd talk openly about tinnitus being a spectrum and include stories of all severity levels. But severe cases are not being mentioned. The message to me seems clear: tinnitus cannot be debilitating, CBT is enough. I don't even know if we can even do something about this. If we send those researchers an email, will we be seen as trolls? Will they think we're just out to get them? Would they even be open to discuss this?
I really don't understand why this was all over the news here in Belgium as a new cure for tinnitus sufferers, where did this come from?

I'm sure these people had some connections with the media.
 
If we send those researchers an email, will we be seen as trolls? Will they think we're just out to get them? Would they even be open to discuss this?
I want to believe they are open to discussing. It's also something that interests me on a personal level; e.g., how was the severe spectrum of tinnitus sufferers considered when these guidelines were being written. It is, after all, the severe sufferers that need these type of guidelines the most.

We know Rilana (the main author of the guidelines) - a couple of years ago we promoted her research survey on here (it wasn't related to these guidelines), and @Steve has met her at some of the tinnitus conferences.

@Hazel will also have the opportunity of meeting Rilana at the next ESIT meeting in Milan later this month.

We haven't yet arranged anything with her, but if schedules permit, Hazel could interview her.

Feel free to send some questions over just in case.
 
The thing about this therapy is to be less anxious about fluctuating tinnitus, by doing exposure exercises. Part two of this treatment is focus. Learning to shift your focus is difficult. I'm now doing almost the exact same techniques for my chronic pain and yes it can help to relax a bit. But no, I'm still freaking out on loud tinnitus awareness so I doubt the effectiveness.
 
Thanks very much Autumnly, for including that attachment.
I don't know how much Orwellian Doublethink , Chinese Red Guard "Re-Education", Jim Joneses' Cultist Psychological Bludgeoning, or North Korean "Removal of Ideological Divergence Training" I would have to undergo to comprehensively believe that a tinnitus spike could be construed as "an acceptance of tinnitus as a benign signal."
 
Let's just stop all medical research and just have this to treat every illness and condition. It's easy, just get used to it. Just get used to AIDS, MS, diabetes, Parkinson's, Cancer, ALS, Ebola, etc. It's just mind over matter. The human brain is a powerful thing. We can do it.

Tell neuromod, frequency therapeutics et al to shut up shop. Not needed thanks. NIOSH and OSHA...we don't need that stuff anymore. It's cool, we got it all sorted now with CBT.
These geniuses deserve a Nobel prize for this.

If you just keep doing anything you want and keep going anywhere, it will get worse... much much worse. So, do you then have to keep repeating the treatment to get used to the ever increasing sound as your hearing deteriorates?
 
Let's just stop all medical research and just have this to treat every illness and condition. It's easy, just get used to it. Just get used to AIDS, MS, diabetes, Parkinson's, Cancer, ALS, Ebola, etc. It's just mind over matter. The human brain is a powerful thing. We can do it.

Tell neuromod, frequency therapeutics et al to shut up shop. Not needed thanks. NIOSH and OSHA...we don't need that stuff anymore. It's cool, we got it all sorted now with CBT.
These geniuses deserve a Nobel prize for this.

If you just keep doing anything you want and keep going anywhere, it will get worse... much much worse. So, do you then have to keep repeating the treatment to get used to the ever increasing sound as your hearing deteriorates?
Perfect post.
 
I frequently ask myself to what degree I would have to transform myself into a stupefied, completely outer-directed , opinion-lacking, cool aid-drinking, unconditionally psychologically subservient character to actually embrace these CBT recommendations. The most insulting feature of this CBT "methodology" is that I would be expected to debase myself to this level.
 
The Fear of Tinnitus Questionnaire
Toward a Reliable and Valid Means of Assessing Fear in Adults with Tinnitus

Objectives: The purpose of this study was to assess the factor structure, reliability, and validity of the Fear of Tinnitus Questionnaire (FTQ); a brief self-report measure of people's fears about potential cognitive, emotional, behavioral, and social consequences of living with tinnitus.

Design: 588 Dutch-speaking adults with tinnitus completed an online battery of questionnaires measuring tinnitus-related distress, fear, catastrophizing, and quality of life. The sample was randomly split into two to perform exploratory and Bayesian confirmatory factor analyses. A subsample of participants (n = 144) completed the battery of questionnaires a second time after a 2-week interval to calculate test-retest reliability and conduct a Bland-Altman analysis. Convergent and concurrent validity of the FTQ was assessed with the complete data set and measures of tinnitus-related distress as the outcome.

Results: Exploratory factor analyses indicated that single- and three-factor FTQ models were both valid solutions. Posterior predictive p values for the Bayesian confirmatory factor analyses ranged between 0.51 and 0.53 indicating that the respective models were an excellent fit for the data. The FTQ showed excellent test-retest reliability (average value intraclass correlation coefficient (ICC) = 0.92; 95% confidence interval, 0.89–0.95) and in the Bland-Altman analysis, satisfactory agreement between participants' scores after a 2-week interval. Furthermore, the FTQ demonstrated good internal reliability (α = 0.83, 95% confidence interval, 0.81–0.85) and added statistically significant amounts of variance to models predicting tinnitus-related distress and interference in daily life.

Conclusions: The FTQ has good psychometric properties and can be used to assess people's fear of tinnitus in research or clinical settings. Further work to establish the reliability and validity should be conducted and include an examination of a version of the FTQ that uses Likert-type response scales which might offer improved sensitivity.
 
"The Fear Avoidance (FA) Model as applied to tinnitus (Cima, 2013) proposes that in people with bothersome tinnitus, fear of tinnitus is a product of catastrophic misinterpretations of the tinnitus sound and that it subsequently leads to safety behaviours that are not functional in the long term, and contribute to avoidance, disability and emotional distress. The Fear of Tinnitus Questionnaire (FTQ) is a 17 item self-report measure assessing fear of tinnitus, using a binary scale with use of a series of statements (e.g. I am afraid that tinnitus will become worse) which people respond to. This poster presents of the initial analysis of the psychometric properties of the FTQ."- source

Bildschirmfoto 2019-04-24 um 11.31.27.png
A similar image can be found in the European guideline.

They also mention the phrase "I am afraid that tinnitus will get worse" in their paper. Which makes sense because in the European guideline they said tinnitus usually doesn't get worse, thus being worried of it can easily be seen as irrational. I also thought some of the questions mentioned applied more to people who recently developed tinnitus.
 
They also mention the phrase "I am afraid that tinnitus will get worse" in their paper. Which makes sense because in the European guideline they said tinnitus usually doesn't get worse, thus being worried of it can easily be seen as irrational.

Wish they could remind my tinnitus it's not meant to get worse as it seems to have missed that memo.

Serious note, I'm gonna try CBT once I get a chance, I'm hoping it can alleviate some of the mental impact.
 
They also mention the phrase "I am afraid that tinnitus will get worse" in their paper. Which makes sense because in the European guideline they said tinnitus usually doesn't get worse, thus being worried of it can easily be seen as irrational. I also thought some of the questions mentioned applied more to people who recently developed tinnitus.
I love how they ignore the fact that tinnitus does get worse for a lot of people. How dare they base a "treatment" plan on that smh.
 
I love how they ignore the fact that tinnitus does get worse for a lot of people. How dare they base a "treatment" plan on that smh.
They translate that into your perception of tinnitus is more intense. You experience it louder but it is not. And I became angry and said for sure it is louder. For someone as a therapist without tinnitus you cannot understand it.
 
They translate that into your perception of tinnitus is more intense. You experience it louder but it is not. And I became angry and said for sure it is louder. For someone as a therapist without tinnitus you cannot understand it.
Lol how easy it is to counter that with "but it is louder, I used to only hear it at night in a quiet room and now I hear it everywhere" though? Bless these CBT types.
 
I was lucky enough to find a therapist who has severe tinnitus and hyperacusis, who helped me quite a bit.
 
Lol how easy it is to counter that with "but it is louder, I used to only hear it at night in a quiet room and now I hear it everywhere" though? Bless these CBT types.

She then probably will deny this and say because your focus is more on it or something. I tried every possible thing to counter such answers, to the point that they thought I was not cooperating enough to let the therapy succeed. It is louder but they say it isn't... They don't have your head, your ears, your anxiety but they do have an opinion about it...
 
She then probably will deny this and say because your focus is more on it or something. I tried every possible thing to counter such answers, to the point that they thought I was not cooperating enough to let the therapy succeed. It is louder but they say it isn't... They don't have your head, your ears, your anxiety but they do have an opinion about it...

Yeah that's my main issue with this approach as well. I can tell the difference between when I'm focusing on it and it sounds louder vs. when it's actually louder - does the sound of the fridge cover it up? Cool, I'm having a quiet morning. It doesn't? Great, I'm having a loud morning and it's only getting louder from there. Sometimes I feel like therapists can't actually understand until they've actually been there...
 
Cognitive Behavioural Model of Tinnitus Distress in Danish

Bildschirmfoto 2019-06-13 um 11.58.49.png
 
Interview met Rilana Cima, die baanbrekend onderzoek doet op het gebied van #tinnitus. Over haar positie, internationale inzet en verantwoordelijkheden die zij voelt.

Google Translate: Interview with Rilana Cima, who does groundbreaking research in the field of #tinnitus. About her position, international commitment and responsibilities that she feels.

Google Translate:
Researcher Rilana Cima (Maastricht University) worked hard to get an initially controversial therapy against tinnitus in the care package. That worked, but this social impact is not yet rewarded. "I don't even have a permanent academic appointment myself, but a scientific responsibility arises, which I certainly feel every day."

Imagine that you have fought for years to convince the medical world, health insurers and the government of the effectiveness of treatment for ringing in the ears. And that this actually works. Does this also affect your career opportunities? You can ask psychologist Rilana Cima (Maastricht University). For the first time in 2012, Cima provided convincing evidence of the effectiveness of cognitive behavioral therapy in severe tinnitus, and played a key role in drafting the new European guideline for treatment.

Cima's scientific career began in 2007. At the time, she worked as a psychologist at Adelante audiology and communication, within a rehabilitation center. "I saw what tinnitus could do to people there and I became fascinated by the problem." What still fascinates her is that it is a problem for which there is no clear cause, but which can have far-reaching consequences for quality of life. "I've always seen it as a" false alarm "; the inability to filter out a stimulus due to its threat value. I wanted to contribute to a treatment for this condition. "

A permanent false alarm
It is a striking common ailment that affects around one in five people somewhere in life.
"And if it is very quiet, then in fact everyone can pick up a sound that he or she does not normally perceive." Yet only a limited proportion of people with tinnitus, around 3 percent, develop serious symptoms. "Those complaints are immediately very serious." These are people who can no longer think of anything else, who are very irritated and even depressed by the sound.

Tinnitus, or "ringing in the ears" is a "neutral" brain signal that acts as a sound. Think of whizzing, hissing, fumbling or hearing the buzz. "It's not the same as hearing voices with a message." It is a signal in the brain that is amplified by a learning system and is interpreted as "sound".

"Tinnitus has traditionally been the site of the audiologist or ENT doctor. They discovered that they could actually do little about the "cure" of this condition. "In fact, ringing in the mechanism is more like something like chronic pain or phantom pain. "It is a form of conditioning based on fear. It is an alarm signal that keeps ringing, while the danger is not actually there. "

"What you are not exposed to, you will never get used to it"
Based on a large study, Cima argues that tinnitus should also be the domain of psychologists, in addition to that of the ENT doctor and the audiologist. "In those fields, people have traditionally been teaching the patients not to think too much about the sound, or to mask it in some way." , or otherwise distract.

"We demonstrated in our research that targeted attention and exposure can be much more effective in reducing symptoms." In a 2012 article in The Lancet, Cima and her colleagues demonstrated that cognitive behavioral therapy is very beneficial based on a large study. has results for patients with severe tinnitus. "The psychological answer, in this case training away the danger responses to the sound sensation, turned out to be very effective compared to the usual distraction approach." The study had so much impact that a colleague from Cima wrote that the end of "therapeutic nihilism" is now was finally in sight.

Cima has a little brother dead at all, suggesting patients to accept their ringing in the ears. The winged statement "You must learn to deal with it" is not accepted by her. "What does that mean? For patients it is often a closed door, and they can do so little with it. What is acceptance? This often gives patients the impression that they themselves are to blame and therefore deal with it "badly", which is a non-helping message in the event of serious suffering. "

Cognitive behavioral therapy teaches the brain to reinterpret the signal, part of which is exposure. "That may sound controversial, but simply put: you will never get used to what you are not exposed to."

Hearing damage is not necessary for ringing in the ears
Once in a while, Ooruizen is in the interest of the national media. Cima finds this attention important, but also notes that the attention is often very unilaterally focused on hearing damage. "It is often associated with festivals, but it is actually used to scare young people. It is a threat to ensure that people protect their hearing. "

"Tinnitus is often associated with festivals, but it is actually used to scare young people."
"What is not mentioned here is that it is estimated that only 70% of people with hearing impairment perceive tinnitus, and that less than half of them are affected by it." Many tinnitus patients even have a so-called "normal hearing" - they hear what every other person can hear, plus a hiss, beep or roll.

"Earlier that was part of the problem. Because these patients were normally hearing, they fell outside the boat for care. After all, no medical cause could be established. "The efforts of Cima and her colleagues have also changed this. The hearing examination is certainly important, but is no longer leading to determine the severity of the tinnitus or to indicate the treatment.

"Look, if it becomes quieter because you can hear less, then you can better perceive" internal "sounds, and perhaps also a tinnitus. Hearing loss is also very stressful for a person. So warn against hearing loss, which in itself is a serious consequence of noise pollution. "

Cima is positive about the efforts of the Dutch tinnitus patient association (Hoormij foundation). "They do a good job, and rightly keep the vision of tinnitus broad." The dedication and interest of the members of the network are particularly great, she says. "They are also critical, and I am certainly not going to state that I have never been involved in a discussion with them, but that is also necessary."

Fighting for a European directive
It finally took almost ten years before the treatment developed by Cima and colleagues was accepted. Not only the medical field, but also health insurers and the health care authority had to be convinced of the effect. "First of all, an implementation study had to be performed to see if the treatment elsewhere - in another center - was equally effective."

"It turned out to be very difficult to find funds to carry out this second study." Scientific and clinical consensus also had to be reached. To achieve this, Cima was a member of the committee for the development of the national tinnitus directive and chair of a European working group for a number of years. She finally managed to reach a consensus on a European directive, but it took many hours. "Sometimes I think to myself: what are you doing?"

It is a legitimate question from Cima to what extent researchers are supposed to be - and remain - involved in their findings. Dutch universities and colleges of higher education - on the instruction of the government - are increasingly focusing on "valorising" knowledge and insights. But are employees prepared for that? And to what extent?

In the case of Cima, enabling effective treatment for tinnitus was primarily the reason to start the investigation. For her, the answer to the question is obvious. "If we are talking about the value of science, then I would argue that this is precisely a task for scientists." First and foremost, it wants to ensure that such a successful strategy reaches the finish line, and that takes effort. "It's just that you are suddenly considered the expert, and if I don't, who will?"

"It's just that you are suddenly considered the expert, and if I don't, who will?"
However, Cima has no training or previous experience in negotiating at this level, and also little support from the sector itself. "I had to learn those skills very quickly in order to be able to operate between those different interests." "At times I feel a bit like an unguided projectile. There is actually no one on whom I can rely on how to deal with these types of major issues. "

Scientific responsibility
Because despite the fact that she receives a lot of "verbal recognition" for her hard work to get treatment in the healthcare package, Cima does not notice much professional change. "I cannot say that I am having a great time at the moment. The point is also that now that this approach is "proven" to work, the scientific parties are less interested in the issues that arise when putting it into practice. "

Although she managed to scrap small grants with some success, Cima, who has been working at the university for seven years, still has no certainty about her career as a researcher. "External parties, such as the Dutch Healthcare Institute or healthcare insurers, do refer to us if more research needs to be done - but who pays for that? I don't even have a permanent academic appointment myself, but a scientific responsibility arises, which I certainly feel on a daily basis. "

Even though she does not have a permanent academic appointment, that does not mean that there is definitely work to be done. "Nowadays there are continuous institutions at the door that would like to be trained in the treatment, but I cannot do it all on my own with my small team. I am also often asked to assess a certain - different - protocol, for example whether mindfulness is also a good approach. That is certainly a legitimate and interesting research question, but it requires support, time and money. "

Unsolicited figurehead
Cima has a central role in which social attention, requests for help from patients and pressure from the medical sector come together, and that is certainly not wrong. "You become more or less suddenly a figurehead and it is not even appreciated by everyone that you play that role." For example, when Cima comes in the media, her colleagues receive countless patient registrations the next day. "People also complain to me about what is being said in the media, as if I come up with the headlines of the RTL News myself."

The number of (help) questions alone indicates that Cima is busy. "I am often the contact person for colleagues in the Netherlands and abroad, so health insurers and health care organizations naturally also have questions. If you search on the internet, you will soon come to me. "In a sense, this is the result of an information shortage in this area, but it is certainly also due to the fact that her name often appears in press releases on the subject. "A lot of work is being done on the hard work that my colleagues and I have done, and compliments and exciting collaborations are also the result, but butter with fish is unfortunately still a long way off."

So much one could say about this article. Another missed opportunity to mention that we nonetheless need medical treatments and ideally a cure.
 

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