Who receives a diagnostic label for fibromyalgia, [CFS], and irritable bowel syndrome? A study in the lifelines cohort, 2026, Tattan et al

forestglip

forestglip

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Who receives a diagnostic label for fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome? A study in the lifelines cohort

Tattan, Mais; Hanssen, Denise J.C.; Rosmalen, Judith G.M.

Highlights
• Only 25% with FM, 14% with CFS, and 48% with IBS received a formal diagnosis
• Female sex and lower education linked to higher odds of getting an FSS label
• Depression, anxiety, older age, smoking reduced the odds of getting an FSS label
• FSS labels linked to lower quality of life and higher health anxiety
• FSS labels associated with limitations to physical but not mental work capacity

Abstract

Objectives
Functional Somatic Syndrome (FSS) is characterized by persistent bothersome symptoms not fully explained by known medical abnormalities. FSS includes Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS), and Irritable Bowel Syndrome (IBS).

Many individuals qualifying for an FSS diagnostic label do not receive one. This study investigates factors associated with receiving an FSS diagnostic label among those meeting the diagnostic criteria.

Methods
A cross sectional study was conducted in the Lifelines population cohort. FSS diagnostic criteria were assessed via validated self-reported questionnaires. Logistic regression was used to examine associations between receiving a diagnostic label and demographic, lifestyle, stress-related, health literacy, healthcare use, and comorbidity variables.

Linear regression was performed to assess associations between diagnostic status and quality of life, health anxiety, and work capacity variables, adjusted for demographic variables.

Results
Of 152,807 participants, 10,017 met diagnostic criteria for at least one FSS. Among them, 25.2% (FM), 14.2% (CFS), and 47.6% (IBS) reported having received a diagnosis.

Female sex, lower education, psychiatric diagnoses other than anxiety and depression, somatic comorbidities, higher healthcare use, and employment were positively associated with receiving a diagnostic label. Older age, smoking, and depressive or anxiety disorders were negatively associated with receiving a diagnostic label.

Receiving a diagnostic label was associated with lower quality of life, higher health anxiety, and reduced physical but not mental work capacity.

Conclusion
Only a minority of participants fulfilling the FSS diagnostic criteria received a diagnostic label. FSS labelling is associated with multiple factors that need further evaluation.

Web | DOI | PDF | Journal of Psychosomatic Research | Open Access
 
forestglip said:
Only 25% with FM, 14% with CFS, and 48% with IBS received a formal diagnosis
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This is based on Fukuda criteria:
Participants fulfilling the diagnostic criteria of CFS were identified according to the criteria of the Centre for Disease Control and Prevention (CDC) (20), requiring chronic fatigue for a at least 6 months, which significantly interfered with daily activities and work and at least four of the eight additional symptoms assessed by the CDC’s CFS symptom inventory.
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forestglip said:
This is based on Fukuda criteria:
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The CDC's CFS symptom inventory likely isn't very reliable, diagnostic criteria require a clinical examination to assess symptoms and exclude alternative causes for the symptoms, not just a quesitonnaire.

So rather than a large number of people with CFS being undiagnosed, it might just be that the CDC's CFS symptom inventory selects a lot of false positives who don't actually have CFS.

The prevalence of CFS was 1.8% (2,793 out of 152,807 participants), which seems much higher than epidemiological estimates.
 
Health anxiety was measured through the Whitely index containing 14 true or false statements (25, 26).
A sum score was calculated, with higher scores indicating higher health anxiety
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It’s actually ridiculous how bad this measure is. They’re basically measuring perception of having a serious illness / effects on life from illness and automatically assume that any high score means overreaction ie. healthy anxiety.
 
Yann04 said:
It’s actually ridiculous how bad this measure is. They’re basically measuring perception of having a serious illness / effects on life from illness and automatically assume that any high score means overreaction ie. healthy anxiety.
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Fascinating, everything except 12 is just the reality and rational reaction to living life with a seriously disabling illness...
 
Does the diagnosis of Chronic Fatigue Syndrome still actually exist in the Netherlands these days. What I tend to read is that it is only referred to as Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome with a prevalence rate of 1 in 250-500. This seems like it could have been written before about 2006.
 
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ME/CFS Science Blog said:
Other studies that used the Fukuda criteria.
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Ah okay. I assumed the non-specific Fukuda could easily hit a prevalence around 4x the prevalence with PEM.

I see this one also gives a pretty high figure, but seems to also be based on questionnaires.

Chronic fatigue syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S. population study
Fukuda criteria identified CFS in 2.3% of males and 1.8% of females.
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Is there a good article you know of to refer to for clinician-diagnosed Fukuda?
 
forestglip said:
I assumed the non-specific Fukuda could easily hit a prevalence around 4x the prevalence with PEM.
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In my experience the biggest difference in prevalence estimates is not in the criteria and whether PEM is required but whether it is based on questionnaires or a medical examination by a physician who talks to the patient and checks for other plausible causes for the symptoms. The latter results in much more exclusions and lower ME/CFS estimates.

forestglip said:
Is there a good article you know of to refer to for clinician-diagnosed Fukuda?
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These two. They are a bit old but at the time people picked up their landline telephone so researchers could more easily screen a population. So suspect that it was a better time to do prevalence estimates.
A community-based study of chronic fatigue syndrome - PubMed
Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas - PubMed
 
I haven’t read this, but am going to guess that the people who receive the diagnoses are in some way thought to be at fault.
Did I guess right?
 
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