Tattan et al. (2026)
- Authors: Mais Tattan, Denise J. C. Hanssen, Judith G. M. Rosmalen
- Institutes: University of Groningen, University Medical Centre Groningen, Interdisciplinary Centre Psychopathology and Emotion regulation, Groningen, the Netherlands
- Publisher: Journal of Psychosomatic Research
- Link: DOI
Summary
This large-scale study reveals a significant ‘diagnosis gap,’ where the vast majority of individuals who meet the clinical criteria for ME/CFS and Fibromyalgia never receive a formal medical label. It highlights that factors such as gender, education level, and healthcare utilization patterns—rather than just symptom severity—strongly influence who gets diagnosed. This suggests that current medical systems are failing to identify most patients, potentially leaving them without access to appropriate support or recognition.
What was researched?
The study investigated the factors associated with receiving a formal diagnostic label for Fibromyalgia, Chronic Fatigue Syndrome (ME/CFS), and Irritable Bowel Syndrome among individuals who already meet the clinical diagnostic criteria.
Why was it researched?
Many people suffer from persistent somatic symptoms that qualify for these diagnoses but remain ‘invisible’ in the healthcare system without an official label. Understanding why some patients receive a diagnosis while others do not is crucial for improving clinical care and equity.
How was it researched?
Researchers conducted a cross-sectional study using data from 152,807 participants in the Dutch ‘Lifelines’ population cohort. They used validated self-reported questionnaires to identify 10,017 individuals meeting the criteria for these conditions and then compared those with and without formal diagnostic labels using statistical modeling.
What has been found?
Only 14.2% of those meeting the criteria for ME/CFS and 25.2% for Fibromyalgia had received a formal diagnosis. Labels were more common in women and those with higher healthcare use, while older age and existing anxiety or depression actually reduced the likelihood of being labeled. Interestingly, those who were labeled reported lower quality of life and higher health anxiety compared to those with the same symptoms but no label.
Discussion
The study is limited by its reliance on self-reported data and a cross-sectional design that cannot prove cause-and-effect regarding quality of life. The findings suggest that medical labeling might be biased by socioeconomic factors and could potentially contribute to health anxiety. It also indicates that a diagnosis often comes late or only for those who navigate the medical system more aggressively.
Conclusion & Future Work
A formal diagnostic label is granted to only a small minority of symptomatic individuals. Future research is needed to determine how these labels impact long-term patient outcomes and healthcare resource management.