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Serious Barriers to Care for Children with ME/CFS in the UK

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What stops children with a chronic illness accessing health care: A mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)
– Source: BMC Health Services Research, Nov 11, 2011

By Carly M Webb, et al.

[Note: The full free-access article can be found here:]

Abstract (provisional):
Background: Pediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is relatively common and disabling, with a mean time out of school of more than one academic year.

National Institute for Health and Clinical Excellence (NICE) guidelines recommend referral to specialist services:

• Immediately if severely affected,

• Within 3 months if moderately affected

• And within 6 months if mildly affected.

However, the median time-to-assessment by a specialist service in the UK is 18 months.

This study used a mixed-methods approach to examine factors associated with time taken to access specialist services.

Time-to-assessment was analyzed as a continuous “survival-time” variable in Cox regression models using data from self-completed assessment forms for children attending a regional specialist CFS/ME service between January 2006 and December 2009.

Semi-structured interviews about barriers experienced in accessing healthcare for their child were conducted with nine parents of children younger than age 17 years (8 individual and one parent couple). Interviews were digitally recorded and analyzed using “thematic analysis.”

405 children were assessed between 2006 and 2009 and information on school attendance was available on 388.

• Only 1 of 125 with severe CFS/ME and 49 of 263 (19%) with mild to moderate CFS/ME were seen within NICE recommended timeframe.

• Increased fatigue was associated with shorter time to assessment (HR = 1.15; 95% CI 1.03, 1.29 per unit increase in Chalder fatigue score; P=0.01).

• Time-to-assessment was not associated with disability, mood, age or gender.
• Parents described difficulties accessing specialist services because of their own as well as their GP’s and Pediatrician’s lack of knowledge.

• They experienced negative attitudes and beliefs towards the child’s condition when they consulted GPs, Pediatricians and Child Psychiatrists.

• Parents struggled to communicate an invisible illness that their child and not they themselves was experiencing.


GPs, Child Psychiatrists and Pediatricians need more knowledge about CFS/ME and the appropriate referral pathways to ensure timeliness in referral to specialist services.

Source: BMC Health Services Research, Nov 11, 2011. doi:10.1186/1472-6963-11-308, by Webb CM, Collin SM, Deave T, Haig-Ferguson A, Spatz A, Crawley E. St George’s University of London; Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol; Centre for Child and Adolescent Health, University of the West of England, Bristol, UK. [Email:]

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