More knowledge, less stigma

Chronic fatigue, irritable bowel syndrome, continually aching muscles – these are all examples of symptoms that apparently have no physical cause. As a result, the symptoms are often labelled ‘psychological’. Incorrectly so, says Professor of Psychosomatic Medicine Judith Rosmalen. She is studying the development, prevention and treatment of unexplained symptoms, and hopes to eradicate a number of deeply ingrained prejudices.

Text: Nynke Broersma, Communications department / Photos: Elmer Spaargaren

Lady Gaga

A few years ago, the singer Lady Gaga postponed her European tour due to chronic pain. In a documentary she explains that she suffers from fibromyalgia, a condition that causes constant and unexplainable muscle pain and fatigue. Fibromyalgia is an example of Functional Somatic Symptoms (FSS) – symptoms that last for longer than several weeks, but for which tests show no abnormalities that explain them.

Criticism

Lady Gaga received a tide of criticism on social media. She was being dramatic, imagining it and feigning symptoms. These are common reactions to people with unexplained symptoms, says Rosmalen, who has conducted a lot of research into FSS. ‘People often assume that if no abnormalities are found, there can’t be much wrong.’ But previous research conducted by the professor revealed that people with unexplained pain suffer just as much as people with similar, explained pain. ‘People with fibromyalgia, for example, have symptoms similar to those of someone with rheumatoid arthritis. They deserve the same level of sympathy and care.’

All in the mind

If no physical cause can be found, then surely it must be psychological? According to Rosmalen, this is an incorrect assumption. ‘All FSS patients encounter healthcare professionals, friends or relatives who suggest that their complaint is all in the mind. But I think it’s wrong to assume that a problem is psychological just because we can’t find a physical cause’.

So psychological factors play no role whatsoever in unexplained symptoms? They do, says Rosmalen, but this is true of all chronic symptoms, whether there is a clear diagnosis or not. ‘There is always interaction between the physical and the psychological aspects. This is where we can make the most ground: by realizing that there is very little difference between explained and unexplained symptoms in this respect.’

Sensitivity during childhood

So, imagine you are conducting research into gastrointestinal problems. You’ve found your test subjects, they’ve filled in the questionnaires and you’ve done initial tests. If you do find abnormalities, you can't yet be sure whether they are the cause or the effect of an illness. To study this, you have to monitor people for a longer period, starting from when they were healthy, says Rosmalen. This is how so-called ‘epidemiological cohorts’ are studied.

Rosmalen has studied one such cohort extensively. It is called TRacking Adolescents’ Individual Lives Survey (TRAILS), a longitudinal study that started in 2001. The participants, who were 10-12 years old at the start of the study, are monitored every two to three years by means of questionnaires, interviews and/or physical examinations. ‘The study has already generated a lot of information. For example, most of the physical symptoms improve during adolescence. But we’ve also seen that some of the children that already had symptoms at the age of 10, did not improve. This accounts for around five percent’, says Rosmalen.

Children of the TRAILS participants

Now that Rosmalen knows that some five percent of the children remain sensitive to symptoms, the next step is to understand why. And can we do anything during early childhood to prevent this sensitivity? In a unique move, Rosmalen is going to monitor the children of the TRAILS participants, from birth wherever possible. ‘This will enable us to identify links between the sensitivity to symptoms of the parents (as measured during TRAILS) and that of their children, and how this eventually pans out’.

Social media, a blessing and a curse

Although Rosmalen is certainly not the only researcher on Twitter, she is perhaps one of the most active. She considers the medium to be both a blessing and a curse. ‘I represent a field in which patients can have bad experiences. Understandably, people sometimes aim their frustrations about this at me on social media. It can be tricky, and it means that I regularly have to reconsider my social media activities.’ But Twitter also has its advantages: positive reactions, sharing knowledge, tackling prejudices, a deeper understanding of patients’ experiences. ‘I keep telling myself that I'm on social media for a large group of followers, and I try to ignore the negativity. Some days it’s easier than others.’

Support for GPs

Rosmalen conducts a lot of research into the development and progression of symptoms, but also into potential treatments. FSS is largely treated by GPs, but research has revealed that they often find this difficult. How do you treat a symptom that has no known physical cause? Rosmalen and her colleagues have developed the e-Health toolbox ‘Grip’ to help GPs to diagnose, treat and counsel people with FSS.

‘Grip’ is a unique tool, which compiles a wide-ranging profile to generate a self-help treatment plan specifically geared towards individual patients. ‘Individualized treatment like this is essential, because every patient is affected by a range of different factors’, says Rosmalen. The exercises are provided online and supported by treatment from the mental health nurse practitioner. Rosmalen is now looking for GP practices to test the effectiveness of ‘Grip’. (More information at the end of this article.)

Dutch figurehead

There is one main thread that features in all of Rosmalen’s work: more shared knowledge, less stigma, which brings us nicely back to Lady Gaga. ‘I’m glad that she has gone public with her symptoms’, says Rosmalen. ’But I’m still hoping for a Dutch celebrity to stand up and serve as a figurehead for people with unexplained symptoms.’

More information

• Contact: Judith Rosmalen
• Vici grant for Rosmalen's research into how childhood experiences influence people’s physical symptoms.
• GP practices willing to participate in a study of the effectiveness of Grip can contact info@gripopklachten.nl or the website without obligation.