Een grootschalige studie van Palacio, Komaroff en anderen

onder 42.390 verpleegsters levert drie interessante bevindingen op:

De incidentie van CVS (het aantal patiënten in de 'bevolking') in deze studie was 0,24%.

Dit komt in de buurt van de 0,19% uit een studie van Nacul en 0,11% van uit een studie van Nijhof.

Uitgaande van die cijfers leven er in Nederland minimaal 18.800 (0,111%) en maximaal 40.600

(0,24%) mensen met CVS en in België minstens 12.500 (0,111%) en maximaal 27.100 (0,24%).

Overigens betreft dit niet het aantal mensen met ME. Dat zijn er naar schatting minder dan de helft.

Een tweede bevinding betreft het grote percentage CVS-patiénten die de diagnose niet krijgt.

Slechts 15% van de mensen die aan de diagnosecriteria voor CVS voldeed, had de diagnose CVS.

Een derde relevante bevinding betreft het grote aantal gevallen van overdiagnose:

slechts een kwart van de mensen die wel de (nietszeggende) diagnose CVS kreeg,

voldeed daadwerkelijk aan de Fukuda-diagnosecriteria voor CVS.

Incidence of myalgic encephalomyelitis/chronic fatigue syndrome

in a large prospective cohort of U.S. nurses.

Fatigue: Biomedicine, Health & Behavior. 2017 May 18. doi: 10.1080/21641846.2017.1323576.

Palacios N, Fitzgerald KC, Komaroff AL, Ascherio A.

ABSTRACT

Background:

The incidence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS),

the rates of both under-diagnosis and over-diagnosis, and

the nature of the onset of the condition

have not been assessed in large studies of health professionals.

Purpose:

To determine the cumulative incidence of ME/CFS

in a large population of health professionals,

to examine the nature of the onset of the illness, and

to estimate the frequency of

both over-diagnosis and under-diagnosis of ME/CFS.

Methods:

We sent an email questionnaire to

participants in the Nurses’ Health Study II (NHS II),

a large prospective cohort of female nurses.

Forty-two thousand three hundred and ninety-four women

completed the questionnaire,

which included

the 1994 Centers for Disease Control and Prevention (CDC) criteria for ME/CFS.

Results:

One-hundred and two women (240 per 100,000 surveyed)

developed an illness

that met criteria for ME/CFS between 1989 and 2009.

The onset of ME/CFS was

gradual in 40.6%,

sudden (following flu-like illness or other precipitating events) in 18.8%,

followed emotional or physical trauma in 32.3%, and

was uncertain in the rest.

Under-diagnosis was common:

only 15 (15%) of the women who met criteria for ME/CFS

reported having been diagnosed.

Over-diagnosis also was common:

four times as many subjects had been diagnosed with ME/CFS

by community doctors as actually met criteria.

The distribution of symptoms was not different

in comparing cases with a sudden onset to those with a gradual onset.

Conclusions:

In this large cohort of female nurses,

we found a low cumulative incidence of ME/CFS.

Over-diagnosis and under-diagnosis were high,

even in this medically sophisticated population.

Keywords:

Fatigue syndrome, chronic, prospective studies, cumulative incidence, cohort studies