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Updated: Aug 30, 2025
Author Spotlight: Quantifying Pain Experience – An Illustrative Approach Using the Pain Body Diagram
Published on: July 7, 2023
Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative
Teona Serafimova1, Caitlin Ascough2, Roxanne Morin Parslow2
1Centre for Academic Child Health, University of Bristol, Bristol, UK teona.serafimova@nhs.net.
Insights
Pain significantly impacts children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), causing severe limitations. Current treatments for pediatric CFS/ME pain are ineffective, highlighting an unmet need for better therapeutic options.
Area of Science:
- Pediatric Rheumatology
- Chronic Illness
- Pain Management
Background:
- Moderate to severe pain affects two-thirds of children with CFS/ME.
- Pain is linked to increased fatigue and decreased physical function in pediatric CFS/ME patients.
Purpose of the Study:
- To gain deeper insights into the pain experienced by children diagnosed with CFS/ME.
Main Methods:
- Qualitative data was collected through semistructured interviews with 13 children diagnosed with CFS/ME.
- Thematic analysis was employed to analyze the interview data.
Main Results:
- Three main themes emerged: the varied nature of pain, the significant negative impact of pain, and the lack of effective pain treatments.
- Pain experiences varied widely, from "burning" to "stabbing" sensations, affecting multiple body sites with differing frequency and severity.
- Pain severely impaired physical activity, affected mental health (anxiety, panic attacks), and impacted social functioning and self-perception.
Conclusions:
- Pain is a common and highly variable symptom in pediatric CFS/ME.
- Pain in these children leads to substantial physical limitations and psychological distress.
- There is a critical unmet need for effective pain management strategies in pediatric CFS/ME.
Background:
Moderate to severe pain affects up to two-thirds of children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and is associated with worse fatigue and physical functioning. This research aims to gain a greater insight into pain experienced by these children.
Methods:
Thematic analysis of qualitative data from semistructured interviews with 13 children with CFS/ME (mean age=15.3 years, 67% female) was completed.
Results:
Thematic analysis enabled construction of three themes: children's wide-ranging experiences of pain, negative impact of pain and lack of effective treatment for pain and nine subthemes. The first theme demonstrated highly varied pain experiences, ranging from 'like [being]… on fire', like 'being stabbed' to 'like…lead'. Children experienced pain in multiple sites and with wide-ranging frequency and severity. The second theme highlighted the profound negative impact of pain on multiple aspects of children's lives. Physical activity was severely impaired; some children 'couldn't leave bed' or 'couldn't…brush [their] own hair'. Abdominal pain meant some would 'go…days without eating'. Pain substantially impacted on mental health, leaving children feeling 'agitated', experiencing 'really bad panic attacks' or making them '[want to] breakdown'. Children felt they 'can't do the things that everyone else can do', had 'missed out' and are 'behind everyone'. Some avoided socialising as they 'don't want to stop everyone else'. The final theme demonstrates the absence of adequate treatment for pain, with participants reporting 'nothing has ever really got rid of it' and only 'slightly [takes] the edge off' and other experiencing side effects.
Conclusions:
Pain in paediatric CFS/ME is highly variable, common and often results in severe physical limitation and poor mental health. Effective treatments for pain represent an unmet need.
