340,000 people. Not yet a recognised disease.
Fibromyalgia is often dismissed as vague or imaginary. The figures tell a different story: it is one of the most common chronic pain syndromes, and even the Health Council believes that its seriousness is not sufficiently recognised.
Bigger than you think
~340.000
people in the Netherlands are estimated to have fibromyalgia, according to patient association F.E.S.
March 2024
the Health Council advised the Minister of Health, Welfare and Sport to treat fibromyalgia to still be recognised as a serious health problem.
~80 to 90%
of people with fibromyalgia are women.
No test, but a score
The diagnosis is based on the fibromyalgia score: a sum of a pain score (how many of the 19 identified body points are painful) and a symptom score for fatigue, sleep and concentration, ranging from 0 to 31. A score of 12 or higher points in the direction of fibromyalgia, but it remains a clinical assessment, not a lab result.
“There is no blood value that shows how bad the pain is. That makes it easy to doubt what you cannot measure.”
It is not in the patient, but in the look
No biomarker
Without a measurable abnormality, fibromyalgia falls outside the type of evidence that assessors prefer to look at
Symptoms overlap with other conditions
Fatigue, pain and concentration problems also occur with other conditions, which makes the distinction difficult.
No separate ICD-11 code
Fibromyalgia falls under the broader category of chronic widespread pain, which limits its visibility in figures and policy decreases.
What does and does not count
What is visible
- People with a confirmed diagnosis by the rheumatologist
- Results of multidisciplinary pain rehabilitation programs
- Research into medication such as pregabalin and duloxetine
What is invisible remains
- How many people saw a WIA or Wmo application fail as 'not objectifiable'
- The years between the first symptoms and the final diagnosis
- The mental toll of constantly having to prove that the pain is real
Where these figures come from
~340,000 people in the Netherlands
Health Council advice March 2024: no recognised disease yet
ICD-11 classification under chronic widespread pain
Fibromyalgia score (19 pain points + symptom score)
UWV assessment and discussion about objectifiability
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