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Shortcomings in the Management of Children and Young people with Suspected Severe ME/CFS

Severe ME/CFS is an under-researched area, and even more so in relation to children and young people. Yet it has a profound impact on quality of life, and as described in a 2021 article  by Dr Faith Newton – “Very seriously affected children are often too sick for doctor’s office visits, let alone school attendance… The severely ill receive little help from their schools, and are socially isolated.”

In a recently published study, Dr Alexander Peter Royston and colleagues explored the screening investigations, referral and management of suspected cases of paediatric severe ME/CFS. They noted shortcomings in these processes – with “full investigation frequently incomplete” in children and young people with ME/CFS and poorly implemented recommendations for referral and management.

What did the study do?

The researchers used data from the British Paediatric Surveillance Unit (BPSU) – a population-wide surveillance that collects data about “rare paediatric disease”, including ME/CFS. The data is from between February 2018 and February 2019, a time period during which paediatricians in the UK and republic of Ireland were invited to complete questionnaires for children and young people (5 – 16 years old) with suspected severe ME/CFS. The study also employed “parallel reporting” from two large specialist paediatric ME/CFS centres who do not receive BPSU survey requests.

A staged process was used to confirm a diagnosis of severe ME/CFS, requiring blood tests to exclude alternate diagnoses and assessment of symptoms characteristics, duration and impact. Urinalysis, whilst recommended in the NICE guideline, was removed as a mandatory criterion by the study team as it was missed so often. Individuals who otherwise met the case definition “but for whom it was unclear whether they had experienced a significant reduction in activities of daily living were classified as having probable severe ME/CFS”. Those who met most criteria but had “incomplete screening tests or information on function were classified as having possible severe ME/CFS”.

The study primarily focused on identifying the proportion of children and young people with confirmed severe ME/CFS “that were appropriately referred to specialist services and reporting the treatments offered to this group”. Secondary analyses focused on “demographics, referral and management of children with probable or possible severe ME/CFS”, and “screening investigations completed in  CYP [children and young people] with possible severe ME/CFS”.

It should be noted that graded exercise therapy (GET) and cognitive behavioural therapy (CBT) both feature in the “management” approaches received by many of the children and young people. The BPSU data was collected prior to the NICE 2021 ME/CFS guidance that takes a firm stance against the recommendation of GET, and has downgraded the use of CBT. The researchers comment that “These approaches were in line with NICE guidelines at the time of study design, though more recent guidelines also recommend dietetic assessments for certain [children and young people] and prohibit graded exercise therapy.” Data collection was also prior to the COVID-19 pandemic, and the prevalence of severe ME/CFS in general has likely significantly increased since then as a result of the pandemic.

What did the study find?

Study population

  • A total of 92 children and young people were included in the study:
    • 33 meeting criteria for severe ME/CFS
    • 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
  • “Nineteen of 33 confirmed severe cases (58%) were female, 32 (97%) were white and the median age of fatigue onset was 13.0 years”


Only 21 of 33 (64%) confirmed severe ME/CFS cases had been referred to specialist services.

The following were classified as management approaches for those referred – activity management, CBT, domiciliary assessment/treatment, GET, medication for symptoms, physiotherapy, social services assessment/support, treatment from Child and Adolescent Mental Health Services (CAMHS).

  • Management provided varied considerably between individuals, and “four received nothing at all”
  • The most frequent approaches were medication (67%), activity management (61%) and physiotherapy (61%)
  • Eight individuals (24%) with severe ME/CFS received CBT
  • 11 individuals (33%)  with severe ME/CFS received GET
  • A low number of domiciliary assessments and support (12%), and social services referrals (6%) were received by confirmed severe cases


The researchers concluded that “Full investigation is frequently incomplete in [children and young people] with suspected severe ME/CFS and recommendations for referral and management are poorly implemented, in particular the needs of [children and young people] who are unable to leave their home might be poorly met.” They raise the possibility that individuals are not receiving the support that they are entitled to, as only a small proportion receive social services assessment/support, and the proportion of home assessments (12%) “falls short of NICE’s recommendations that home visits should be offered to all with severe or very severe ME/CFS”.

The researchers acknowledge that their method potentially underestimates the prevalence of confirmed severe ME/CFS in comparison to other population-wide studies due to the use of “strict case definition criteria”. They also state that “Since a high proportion of patients with severe ME/CFS are housebound, making them ‘hard to reach’ and potentially underdiagnosed with poor access to support, this might limit the generalisability of this study’s findings across the [children and young people] severe ME/CFS population.”

This study is useful as it provides information about whether children and young people with suspected severe ME/CFS are being adequately assessed and referred for appropriate management. Considering the data for the current study was collected prior to the release of the NICE 2021 guidelines which prohibit GET and the COVID-19 pandemic it would be useful if this study is repeated in the future to assess whether there has been any difference in assessment and management of children and young people with severe ME/CFS.

Read about a previous study by the researchers addressing the prevalence of severe ME/CFS in children and young people.

Read about the research challenges in severe and very severe ME/CFS.

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