This leaflet contains general information to help guide support pupils with persistent fatigue. This includes those with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) and where fatigue is triggered by an acute COVID 19 infection, sometimes called Post COVID Syndrome or Long COVID.
What is CFS/ME?
Chronic Fatigue Syndrome (CFS), also sometimes called Myalgic Encephalitis (ME) is a relatively common condition in children and young people, affecting about one in a hundred (1%) of teenagers.
Its exact cause is unknown, but it can be triggered by a viral illness, including COVID 19. It is characterised by extreme fatigue not relieved by rest or sleep, but also may present with other symptoms that commonly include:
- Muscle or joint pain
- Headaches
- Sleep disturbance
- Stomach pain and nausea
- Dizziness
- Reduced concentration and memory, sometimes called ‘brain fog’
Some children and young people can also struggle with persistent fatigue and associated symptoms but do not have a CFS/ME diagnosis. This might be because they have other health conditions contributing to their symptoms. We also look after children and young people in this group, and they often benefit from a similar approach to management.
Children and young people with fatigue tend to have a limited amount of energy. Energy expenditure might be physical, occurring with activities involving mobility, cognitive, for example schoolwork, reading or watching TV or emotional, including emotional distress, anxiety or arguments. If they exceed their energy capacity, they often find that they experience an increase in fatigue and other symptoms that may last several days or weeks known as Post Exertional Symptom Exacerbation (PESE) or ‘payback’. It is common to see children and young people in a cycle of over exertion and payback, and over time this leads to an overall reduction in energy levels. This is known as a ‘boom and bust’ cycle.
Great North Children’s Hospital fatigue service
We are a multi-disciplinary team consisting of:
- Dr Neil Davidson, Consultant Paediatrician
Dr Heather Borrill, Consultant Clinical Psychologist - Victoria Harbottle, Physiotherapist
We provide ongoing care, support and rehabilitation for children and young people in Newcastle with fatigue. Education is a very important part of a child or young person’s life, and we work closely with schools supporting pupils with fatigue.
Part of our treatment package usually involves a meeting between health, education and the child or young person and their family to discuss a bespoke approach to supporting their education.
Our role is to offer advice to schools and families about how children and young people with long-standing fatigue can access education throughout their rehabilitation. We can be contacted by e-mail at [email protected].
What might this mean for school or college?
Each child or young person with persistent fatigue is different and the treatment approach is tailored to their individual needs, however there are some common strategies that we may use:
Activity management
Management of fatigue involves identifying a person’s baseline level of energy expenditure, which is the amount of high energy activity they can do in a day without experiencing payback. This will often mean reducing a child or young person’s activity in the first instance and this may involve the introduction of a partial timetable. The aim is for a child or young person to be attending consistently, even if that means for less time, rather than aiming for full-time attendance and falling into a pattern of boom and bust, leading to payback and a deterioration in their condition over time. Once a baseline is established, we can work with the child or young person to gradually build their activity. However, this must be done in a very gradual way over a long periods of time, with each increase being followed by a period of consolidation, to ensure that they are able to manage. Some children and young people also find the inclusion of rest breaks into their timetable useful.
Strategies to improve concentration
Children and young people with fatigue conditions may struggle with concentrating and retaining information, and often work best in short chunks of 30-45 minutes. The inclusion of rest breaks can be useful in allowing a student time in a quiet place, either as scheduled breaks or in the form of a medical timeout card. The provision of written prompts, lesson outlines and memory aids may also be helpful for pupils particularly struggling with brain fog.
Social inclusion
We recognise that school is important to children and young people not just for education, but also as a key part of their social development. Having a chronic health condition can be very isolating, and the impact of managing it can often lead to increases in anxiety and low mood. Enabling a child or young person with persistent fatigue to maintain some social time with their peers is very important. We usually suggest that some ‘non-lesson’ time is included, such as break, form time or lunch, even in a reduced timetable.
Exams
Young people with persistent fatigue can find the added pressures of exams particularly challenging. They may benefit from smaller exam settings, extra time and rest breaks. We are able to provide the supporting medical evidence for these applications.
Patient advice and liaison
The Patient Advice and Liaison Service (PALS) can offer on-the-spot advice and information about the NHS and welcome your feedback on services. You can contact them on freephone 0800 032 02 02 or e-mail [email protected]
