Question

My 13-year-old daughter had a very nasty flu-like infection about two months ago. Our GP thought she might have had glandular fever but a blood test was negative.

Since then she has continued to have severe fatigue, post-exertional malaise (PEM), brain fog, frequent headaches and unrefreshing sleep. She has tried to return to school on two occasions but this has not been successful. Not surprisingly, she is getting upset at remaining so unwell and losing contact with her friends.

Our GP is very reluctant to make a diagnosis of ME/CFS in such a young person and says that it’s probably just ‘post-viral fatigue’. However, he has offered to refer her to a paediatrician if she continues to remain unwell. Could this be ME/CFS?

Answer

As with adults, there is no diagnostic blood test for ME/CFS in children. So the diagnosis has to be made on symptoms and exclusion of other medical problems that can cause an ME/CFS-like illness.

All the symptoms you describe – debilitating fatigue, PEM, unrefreshing sleep, and cognitive difficulties/brain fog – are key symptoms of ME/CFS. However, at this stage she may just be having a more severe type of post-viral fatigue syndrome – as your GP has suggested.

Fortunately, the new NICE guideline on ME/CFS makes a series of very clear recommendations regarding suspecting and confirming a diagnosis of ME/CFS in children and adolescents. So I would diplomatically refer your GP to the relevant sections in the NICE guidance on ME/CFS as these cover all the steps that need to be taken when a child or adolescent is not recovering from a viral infection.

1.2.2: ME/CFS should be suspected if a child or young person has:

• Persistent debilitating fatigue, post-exertional malaise, unrefreshing sleep, and cognitive difficulties present for at least four weeks;
• A significant reduction in ability to engage in educational, social, or personal activities;
• Symptoms not explained by another condition.

1.2.7: Recommendations when ME/CFS is suspected:

• Refer the child to a paediatrician for further assessment and investigation for ME/CFS and other conditions;
• Work with their school or educational setting to support flexible adjustments or adaptations.

I would add that there are important recommendations on how a young person with ME/CFS should be managed in relation to their continuing education:

1.9.3: Health and social care professionals should follow the Department for Education's guidance on supporting pupils at school with medical conditions or equivalent statutory guidance.

1.9.4: Health and social care professionals should work with training and education services to:

• Provide information about ME/CFS and the needs and impairments of children and young people with ME/CFS, including the need for a balance of activities in their life
• Discuss the child or young person's care and support plan so that everyone has a common understanding of their priorities, hopes and plans
• Discuss a flexible approach to training and education – this could include adjustments to the school day, online learning or education at home and using assistive equipment.

1.9.5 Give parents and carers information about education, health and care (EHC) plans and how to request one from their local authority.

1.9.6 Advise children and young people with ME/CFS and their parents or carers (as appropriate) that:

• Training or education should not be the only activity they undertake
• They should aim to find a balance between the time they spend on education or training, home and family life, and social activities.

More Information:

• NICE guideline (ng 206) on ME/CFS: https://www.nice.org.uk/guidance/ng206
• ME Association Booklet: Diagnosing ME/CFS
• ME Association Booklet: Diagnosis and Management in Young People: a Primer