ME in Childhood: How the Paediatrician Can Help

This document, written by Dr Nigel Speight, a consultant paediatrician with many years of experience treating children and young people with ME, explains how healthcare professionals can better diagnose, support and manage children affected by Myalgic Encephalomyelitis (ME).

The Importance of Diagnosis

A timely and accurate diagnosis is crucial. ME is often missed because healthcare professionals may focus on a single symptom, such as fatigue, rather than taking a full clinical history.

ME is characterised by:

• Reduced energy levels.
• Severe exhaustion following activity.
• Cognitive difficulties, including confusion and memory problems.
• Sensitivity to noise, light and movement.
• Post-Exertional Malaise (PEM), also known as Post-Exertional Symptom Exacerbation (PESE), where symptoms worsen after physical, mental or sensory activity.

The 2021 NICE Guideline recognises PEM as a key feature of ME.

Understanding ME

The exact cause of ME remains unknown. However, research suggests that it involves abnormalities affecting multiple body systems, including:

• The nervous system.
• The immune system.
• The autonomic nervous system.
• Energy production within the body.

ME is increasingly viewed as a complex, multi-system physical illness rather than a psychological condition.

How ME Develops

ME can begin suddenly following infections such as:

• Influenza.
• Glandular fever (mononucleosis).
• Hepatitis A.
• COVID-19 and Long Covid.

In other cases, symptoms develop gradually without a clear trigger.

Severity varies considerably. Some children experience significant improvement or recovery over time, while others remain severely affected for many years.

Pacing: The Recommended Management Strategy

Current NICE guidance recommends “pacing” as the most appropriate management approach.

Pacing involves:

• Staying within personal energy limits.
• Resting when necessary.
• Avoiding overexertion.
• Gradually learning how to manage activity levels.

The document emphasises that “graded exercise therapy” (GET) and programmes based on fixed increases in activity are no longer recommended and may worsen symptoms in some patients.

Support Matters

Children with ME often need practical support in many areas of life.

Healthcare professionals can help by:

• Providing formal diagnosis and validation.
• Liaising with schools.
• Arranging home tuition when required.
• Supporting applications for disability benefits.
• Helping secure exam adjustments.
• Referring families to support organisations.

The author argues that ongoing support from a consultant paediatrician is beneficial for most children with ME.

Protecting Children with ME

Without a diagnosis, children may be incorrectly labelled as:

• School avoidant.
• Anxious.
• Malingering.
• Psychologically disturbed.

The document stresses that an official diagnosis can help protect children from misunderstanding and inappropriate interventions.

It also highlights concerns that some severely affected children have been referred to psychiatric services unnecessarily and subjected to unsuitable treatment approaches.

Managing Symptoms

Although there is currently no cure for ME, some symptoms may be eased through supportive treatment.

Areas where treatment may help include:

• Sleep difficulties.
• Pain management.
• Orthostatic intolerance and POTS (Postural Orthostatic Tachycardia Syndrome).

Medications discussed include amitriptyline, melatonin, low-dose naltrexone and treatments for POTS where clinically appropriate.

Very Severe ME

The document pays particular attention to children with severe and very severe ME.

These patients may:

• Be bedbound.
• Be unable to tolerate light, sound or movement.
• Experience serious feeding difficulties.
• Be unable to speak or swallow easily.
• Require tube feeding.
• Need care delivered at home rather than in hospital.

The author argues that excessive investigation, frequent professional involvement and unnecessary hospital admissions may increase distress and worsen symptoms.

The Role of ME Charities

Support organisations play an important role by:

• Providing information.
• Offering emotional support.
• Helping families navigate practical challenges.
• Connecting people with others who understand the condition.

The author notes the value of both local and national ME charities in supporting affected children and their families.

Future Treatments

The document discusses the possibility that immunoglobulin (IgG) therapy may deserve further research as a treatment option for some patients with severe ME.

While there is currently no established cure, emerging research suggests that further investigation into immunological treatments may be worthwhile.

Key Messages

The document concludes with several important messages:

• ME is a serious and potentially disabling illness.
• Early diagnosis is essential.
• Pacing remains the cornerstone of management.
• Children with ME require support, validation and protection.
• Severe and very severe ME can be life-changing and may require specialist care.
• Home-based care is often preferable for very severe cases.
• Recovery is possible, but not guaranteed.
• Greater medical education, awareness and resources are needed to support affected children and families.

This document strongly advocates a compassionate, patient-centred approach that recognises ME as a genuine physical illness and emphasises practical support, symptom management and protection from harm.