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."