A national cross-sectional survey of diagnosed sufferers of myalgic encephalomyelitis/chronic fatigue syndrome: pathways to diagnosis, changes in quality of life and service priorities.
BACKGROUND
The diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is subject to debate.


OBJECTIVE
To measure the time to diagnosis and services accessed.


METHODS
A national cross-sectional study. A profile and service utilisation questionnaire, information on the pathways to diagnosis, the WHOQoL Brief and a listing of priorities of the needs of participants were used. Individuals were invited to participate if they had a medical diagnosis of ME/CFS.


RESULTS
A total of 211 surveys were returned. Prior to diagnosis sufferers accessed on average 4.5 services after their initial consultation. The mean time to diagnosis was 3.7 years but time ranged from 0 to 34 years. Quality of life deteriorated post-onset. The priority for future service provision was increased understanding and diagnosis of ME/CFS by the medical profession.


CONCLUSIONS
In order to alleviate the burden on the sufferer there is a greater need for education on this condition.
Comiskey
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C
School of Nursing and Midwifery, Trinity College Dublin, 24 D'Olier St, Dublin 2, Ireland. Catherine.comiskey@tcd.ie
Larkan
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F
D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D019468:Disease Management; D015673:Fatigue Syndrome, Chronic / Q000175:diagnosis* / Q000628:therapy; D005260:Female; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006801:Humans; D007494:Ireland; D008297:Male; D008875:Middle Aged; D011788:Quality of Life