Better care needed for young people with severe ME/CFS

A study of children and young people in the UK pre-pandemic found that investigation, referral and management of those with suspected severe ME/CFS do not always meet NICE recommendations.

This suggests patients may be receiving suboptimal care since alternative diagnoses are not appropriately excluded and specialist care is not provided. The low number of young people receiving domiciliary visits or social services assessment/support limits their access to management.

The researchers conclude that further work should focus not only on determining the most effective treatments for children with severe ME/CFS but also on exploring the barriers to accessing these services and how these can be addressed.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a disabling condition that affects people of all ages, including children and young people (CYP).
• NICE (The National Institute for Health and Care Excellence) published guidelines in 2021 recommending that CYP with suspected severe ME/CFS should have standardised screening investigations to exclude conditions other than ME/CFS that might cause similar symptoms.
• Those with a confirmed diagnosis should be referred to specialist care and this should include domiciliary visits, particularly for individuals unable to leave their homes. It is not known how often these recommendations are implemented.

WHAT THIS STUDY ADDS

• The standardised investigations recommended by NICE are inconsistently performed for CYP with suspected severe ME/CFS, and this is a barrier to confirmation of diagnosis.
• Referral guidelines are not met for nearly one-third of CYP diagnosed with severe ME/CFS.
• Medication to manage symptoms is prescribed for the majority but domiciliary visits and social service referrals are quite uncommon, received by only 12% of confirmed cases.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• This study suggests the provision for CYP with ME/CFS, including appropriate investigation and onward referral to specialist services requires standardisation in clinical practice.
• Further research is required to identify barriers to the NICE guideline’s implementation and how these can be tackled.

Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study  by Alexander Peter Royston, Sarah Burge,  Ilaria Idini,  Amberly Brigden, Katharine Claire Pike in BMJ Paediatrics Open 2024;8:e002436 [doi: 10.1136/bmjpo-2023-002436]

Research abstract:

Objective 

Severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in children and young people (CYP) is a little-understood condition which significantly impacts education, development and quality of life.

We used data from a population-wide surveillance study to explore the screening investigation, referral and management of suspected cases of paediatric severe ME/CFS.

Methods 

A British Paediatric Surveillance Unit (BPSU) study reported cases of CYP with suspected severe ME/CFS between February 2018 and February 2019. Paediatricians reporting cases to BPSU and allied healthcare professionals in two large specialist paediatric ME/CFS centres were invited to complete questionnaires for CYP meeting the surveillance case definition. The study focused primarily on CYP with confirmed severe ME/CFS and the extent to which their care met NICE  (The National Institute for Health and Care Excellence) recommendations but also considered separately those with probable or possible severe ME/CFS.

Results

This study includes a total of 92 CYP with suspected severe ME/CFS; 33 meeting criteria for severe ME/CFS and an additional 59 classified as probable or possible severe ME/CFS. For 16 possible cases, incomplete investigation to exclude alternative diagnoses prevented confirmation of a severe ME/CFS diagnosis.

Only 21 of 33 (64%) confirmed severe ME/CFS cases had been referred to specialist services. The management provided varied considerably between patients and four received nothing at all. Of the management provided, the most frequent approaches were medication (67%), activity management (61%) and physiotherapy (61%).

Domiciliary assessments and support, and social services referrals were received by 12% and 6% of confirmed severe cases. Similar proportions of management approaches were seen in probable/possible severe ME/CFS.

Conclusion

Full investigation is frequently incomplete in CYP with suspected severe ME/CFS and recommendations for referral and management are poorly implemented, in particular the needs of CYP who are unable to leave their home might be poorly met.