CHRONIC FATIGUE SYNDROME/ME

Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) is relatively common in children, affecting at least 1% of teenagers. It is probably the largest cause of long-term absence from school.

SUPPORTING STUDENTS             MORE INFORMATION 

Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) symptoms may include:

• Extreme fatigue after normal everyday activities
• Pain (including headaches)
• Sleep disturbance
• Malaise
• Dizziness
• Nausea
• Impaired mental functioning (poor concentration, distractibility, difficulty focusing, poor memory, ‘brain fogging’)

Fluctuation and Payback

Children and young people with CFS/ME usually have only a finite amount of energy capacity. Therefore they may appear ‘well’ on one day and take part in activities. However, the normal “recharging of batteries” is impaired. If they have an active day that exceeds the amount of available energy, then the young person experiences a ‘payback’ over the next day or two where they may feel ‘fluey’ and wiped out. This is when they are likely to miss school. This is also known as a “Boom and Bust” cycle. Fellow pupils may only see children on their ‘active’ days and therefore it may be harder for them to understand the impact of the condition. Young people with CFS/ME may feel left out and misunderstood and therefore be more likely to experience anxiety and low mood. 

Energy Expenditure

The management of CFS/ME involves finding out how much high energy activity time a young person can spend every day, without experiencing this payback. This is called the baseline. There are three types of energy expenditure: physical, cognitive and emotional.

• Physical energy expenditure occurs for any activities involving mobility.
• Cognitive energy is anything to do with thinking tasks – all classroom work is high energy cognitive activity. Other high energy cognitive activity would be watching television or chatting with friends.
• Emotional energy is often easy to overlook. This includes any emotional distress, rows, anxiety and ‘over-thinking’ the young person experiences. Although this can be difficult to control, it needs to be factored into the available amount of energy.

Treatment Programmes

CFS/ME treatment programmes are tailored to the individual’s needs, and may include:

Adjustments to sleep-wake cycle

Changing sleep-wake cycles can lead to an increase in symptoms in the short term, and this may well have an impact on their school attendance.

Changing activity patterns

There is usually a reduction in levels of activity at the start of treatment. Students will often be advised to reduce their planned school attendance in the short term. It is better to attend for less time, consistently, rather than trying to attend full time and missing random school days/weeks due to payback. Once they are achieving a manageable amount of school attendance every day, without experiencing payback symptoms, they will then work on building their attendance back up in a gradual and sustainable way.

Supporting students with Chronic Fatigue Syndrome

The suggestions below will really help children and young people with CFS/ME to reach their full academic potential.

Rest breaks during school time

Some children/young people with CFS/ME benefit from regular rest breaks. These breaks should be in a quiet place, ideally away from the classroom. It would be helpful if breaks could be scheduled, especially for younger children. Other students prefer a medical timeout card which they can use in lessons if they feel they need a break. They should be allowed to leave the classroom without having to explain why. In a quiet space, e.g. the library, they should spend the time reading or listening to music or doing a downtime activity. They can be expected to return to the lesson after 10-15 minutes.

Concentration

We have found that young people with CFS/ME benefit from working in chunks of no more than 30-45 minutes; severely affected students may only be able to sustain concentration for 15 – 20 minutes. Students often have increased sensitivity to everyday sounds and are likely to be more easily distracted in the classroom environment. Students may experience ‘brain fog’ i.e. difficulty processing information – it can be helpful to: provide written instructions and memory aids; simplify work (e.g. giving their pupil one task at a time); offer extra time for activities and provide support with writing (e.g. scribing, providing iPads for dictation or typing or providing alternative activities to writing).

Keeping up with schoolwork

Due to missing school and problems concentrating, young people with CFS/ME may fall behind with their schoolwork. They may also experience stress and anxiety as a result of falling behind. It may be helpful to help them prioritise their schoolwork and the skills, tasks and homework that is most important to complete.

Exams

Young people with CFS/ME benefit from being allowed to sit exams in a room on their own, or with a few other students. They should be allowed to get up and move around for timed rest breaks. For those students taking public exams a request should be made for access arrangements and reasonable adjustments.

Mood &/anxiety

Young people with CFS/ME are more likely to experience depression and/or anxiety, particularly social anxiety and generalised anxiety. They may need additional mental health support in school and school may need to signpost them to seeking help with their mental health outside of school, including via their GP or specialist services.

Friendships

CFS/ME can have an impact on friendships. Young people with CFS/may benefit from maintaining a sense of belonging and connection with their class during absences. This could be achieve from things such as organising contact from classmates (e.g. sending a card).

Additional information for primary schools

Children under the age of 12 can be diagnosed with CFS/ME, although it is less common in this younger age group. Younger children need more support to help them follow the guidance on managing their activity. It may be helpful for primary school teachers to meet with parents to discuss a plan of support. In addition to the above guidance, the following may be helpful to consider:

• Younger children with CFS/ME are more likely to experience problems with anxiety. Exploring their worries and encouraging them to gradually face their fears, with appropriate support, can help with this.
• Often younger children find it difficult to express their thoughts and feelings about their health and wellbeing. Some teachers have found it helpful to have a check-in system, and communication aids such as emotion cards may be beneficial.
• During rest breaks, some teachers have been able to arrange quiet, low stimulus spaces with comfort items such as beanbags and cushions.
• It can be helpful to reframe restrictions and limitations on the child. For example, some children will be unable to join activities like P.E lessons and play breaks. These children could be given alternative low energy “roles” such as staffing the school’s reception desk.
• Some primary school teachers have said that it is helpful to speak to their class to raise awareness about a particular health condition and to promote supportive and empathetic attitudes. We would recommend speaking to your pupil and their family first before discussing CFS/ME with your class. 

More Information

CFS/ME resources:

• The Specialist Paediatric CFS/ME service based at the Royal United Hospitals Bath NHS Foundation Trust have produced a series of leaflets, which can be found here: www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/leaflets.asp?menu_id=1
• “Overcoming Chronic Fatigue in Young People” by Katharine Rimes and Trudie Chalder 

CFS/ME and Mood:

These books may be helpful for teachers, as they provide some practical strategies for supporting young people with mood difficulties:

• “Overcoming Your Child's Fears and Worries: A Self-help Guide Using Cognitive Behavioral Techniques”, Cathy Creswell and Lucy Willetts
•  “Teenage Depression: A CBT Guide For Parents”, Monika Parkinson and Shirley Reynolds

Thank you

Many thanks to Prof. Esther Crawley, Dr Roxanne Parslow, Dr Maria Loades and Amberly Brigden at the Centre for Academic Child Health, Bristol Medical School www.bristol.ac.uk/academic-child-health for writing this section for us.