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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

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

  1. CFS/ME Working Group (2001) Report to the Chief Medical Officer of an Independent Working group. Department of Health, London. http://www.dh.gov.uk/assetRoot/04/05/95/06/04059506.pdf

  2. Craig T, Kakumanum S (2002) Chronic fatigue syndrome: evaluation and treatment. Am Fam Physician 65(6):1083–1091 http://www.aafp.org/afp/2002/0315/p1083.html

    Google Scholar 

  3. Carruthers B, van de Sande M (2005) ME/CFS A clinical case definition and guidelines for medical practitioners: an overview of the canadian consensus document. http://www.cfids-cab.org/MESA/me_overview.pdf

  4. CFS Working Group convened under the auspices of the Royal Australasian College of Physicians (2002) Chronic disease syndrome: clinical practice guidelines. MJA 176:S17–S55. http://www.mja.com.au/public/guides/cfs/cfs2.pdf

  5. Centers for Disease Control and Prevention (CDC) Chronic fatigue syndrome: treatment options, May 2006. http://www.cdc.gov/cfs/cfstreatment.htm http://www.cdc.gov/cfs/cfstreatmentHCP.htm

  6. Njoku MGC, Jason LA, Torres-Harding SR (2007) The prevalence of chronic fatigue syndrome in Nigeria. J Health Psychol 12(3):461–474

    Google Scholar 

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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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Correspondence to C. Comiskey.

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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

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