Abstract
Background
The diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is subject to debate.
Aims
To measure the time to diagnosis and services accessed.
Method
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.
Conclusion
In order to alleviate the burden on the sufferer there is a greater need for education on this condition.
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References
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Acknowledgments
The authors would like to acknowledge the contribution to the research from the Research Steering Committee comprising of members from the Health Service Executive, the Irish ME Trust and the Irish ME/CFS Support Group. Authors would also like to sincerely thank the sufferers of ME/CFS who gave of their valuable time and energy to complete the survey forms. Thank you. This research was funded by the Irish Health Service Executive.
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Comiskey, C., Larkan, F. 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. Ir J Med Sci 179, 501–505 (2010). https://doi.org/10.1007/s11845-010-0585-0
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DOI: https://doi.org/10.1007/s11845-010-0585-0