Understanding ME

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ME, or Chronic Fatigue Syndrome, is often a misunderstood disease, causing those who suffer from it to feel exhausted after a period of exertion. It is thought that viral infections may play a part with implications for diagnosis post-Covid-19. Elizabeth Holmes explains why schools should be cautious in their expectations.

Summary

  • Children experiencing ME will struggle to attend school.
  • There is concern that there could be an increase in the number of children with ME.
  • ME has a profound impact on a child’s ability to learn.
  • In cases of ME prosecution is not appropriate and can be challenged.

ME, or Myalgic Encephalomyelitis to give it its full name (also called Chronic Fatigue Syndrome or CFS), is a potentially devastating multi-system disease. It is classified by the World Health Organisation as a neurological disease and it has a wide range of debilitating symptoms that have the potential to severely disrupt the sufferer’s life.

ME in children is particularly challenging. There is very little reliable information about the number of children and young people being diagnosed with ME/CFS. Tony Britton, fundraising and PR manager at the ME Association, said:

‘The 2002 report of the Chief Medical Officer’s independent working group referred to a 0.07% prevalence rate among children and young people in the UK – which gives a figure as high as about 47,600. But that figure is not one that UK charities generally work with. We tend to use a lower one – about 20,000.’

These children and young people who are diagnosed as having ME/CFS are often so ill that that they are unable to attend school regularly, if at all, and may not even be able to cope with a limited amount of home tuition.

What is ME?

In its most severe form, ME is a complex multi-system disease with a wide range of disabling symptoms, the most characteristic of which is post-exertional malaise, which causes symptom flare-ups a day or two after even minor physical or mental exertion.

The implications for schools are quite clear. As Britton explains:

‘One of the largest epidemiological studies of ME revealed that the disease was the biggest cause of long-term sickness absence from school for both students and staff (Dowsett and Colby, Journal of Chronic Fatigue Syndrome, 1997).’

Research has suggested that viral infections may play a part, especially where cases are clustered, and there is great concern that long Covid, a protracted version of Covid-19, the disease caused by SARS-CoV-2, may lead to increasing cases of ME across all ages in the near future.

 As Britton says:

‘We’ve seen the first medical diagnoses of post-Covid ME/CFS and we have a horrible feeling that we’ll be seeing this diagnosis in young people before long. If this happens, there will be implications for education.’

If we are not already planning for greater numbers of children and young people needing adjustments in our schools for debilitating fatigue, perhaps we should be.

“The children are desperate to learn but are unable to cope with the physicality demanded by their surroundings”

The impact on school attendance

The average school day, if there is such a thing, can be tiring for children and young people without underlying conditions. For those who are dealing with ME/CFS, it can prove impossible to access the learning on offer. One of the greatest difficulties to overcome is actually getting into school at all. Britton says:

‘Those who actually make it into school may not have the resilience to be able to cope with a whole day of learning.

This is not school phobia or simple skiving. The children are desperate to learn but are unable to cope with the physicality demanded by their surroundings. They can become swamped by overwhelming fatigue and their ability to concentrate and to remember lessons is badly affected.’

Consequently, attendance at school can be hit. The ME Association regularly hears of children who have missed whole terms or years at school. Britton explains:

‘Paradoxically, we also hear that many of the same children when they do return to school or college – or to education later in life – catch up very quickly and achieve outstanding grades. They have a huge interest in education and improving their life chances.’

Allowing time to heal

The Young ME Sufferers Trust (Tymes Trust) is clear that there is a health imperative when it comes to attendance. In the absence of any ready-made treatments or cures, the children should be given the space for their bodies to heal themselves before they return to education. Without the time and space to heal, children and young people struggling with ME/CFS may face unnecessary barriers to their long-term development.

In some schools, non-attendance can be seen as school avoidance behaviour, and that is usually not so with children who are severely affected by ME or their parents. Britton has seen that:

‘Many parents suffer enormously with the stress brought on by being falsely accused of making up their children’s illnesses and being threatened with prosecution. Tymes Trust specialises in intervening in these court processes, often being called in at quite a late stage, and succeeding in stopping prosecutions.’

Awareness and understanding

Barbara Goodchild, principal therapist at the Pain/Chronic Fatigue Services at Sheffield Children’s Hospital has extensive experience of working with young people with CFS. She explained:

‘Children and young people have told us that it is helpful to them to have teachers willing to learn about the complex nature of Chronic Fatigue Syndrome. Feeling genuinely understood makes a significant difference to a young person’s progress and recovery. Each child experiences the condition in different ways, has different needs and will need a personalised management programme. In addition, each child will recover at different speeds. It is not helpful to apply a graded programme of attendance with deadlines (for example, they will increase attendance by one day a week over six weeks). It is much more helpful to arrange regular reviews – for example half termly – where decisions can reflect the child’s progress.’

Case study

Bethany was a bright, intelligent and lively 10-year old. There was no stopping her! Then she got a chest infection followed by Glandular Fever, all in the Summer of 2019. Here, Bethany’s mum, Sonja Phillips, explains the challenges of her subsequent diagnosis of ME and how this has impacted Bethany’s school life.

‘She was starting Year 6 but before long was absent from school for days and then weeks at a time. No amount of rest helped. Her GP referred her to a paediatrician who ran further blood tests. Three months later she was still taking time off school. She cried with fatigue and pain in her legs. The fatigue is from concentrating in class, the noise levels of a room full of children, keeping up the façade that she’s OK, the lights in the classroom, the laptops and the whiteboard.

School suggested that Bethany went part time. This worked well. It gave her a routine, time to learn and time to rest. She managed to get to half term and then there were two weeks’ full rest. We continued like this for a while until Bethany was well enough to go full time again.

Lockdown was a big shock. Home learning showed that even on a one-to-one basis, Bethany struggled to learn new things. Her fatigue levels were so high, with the added anxiety of Covid, that she could not process new information. Every day seemed a bad day.

In July 2020, the paediatrician confirmed that this was ME. This was my worst nightmare, having suffered myself for over 20 years. We are now awaiting referral to University College Hospital to see a specialist team.

Bethany is now 11 and has just started secondary school, on a part-time timetable, for 2.5 hrs a day. She can have rest breaks in between. This was agreed with the SENCO following a two-day summer school which led to Bethany having a two-week crash.

By allowing Bethany to go part time, we hope to work with her body. Adults with this condition are signed off work. You stay home and sleep, rest and do what your body needs to get you through the worst. Even by doing these things, you are still at risk of being in the 25% of people who are either housebound or bedbound. As a child with ME, you are dealing with hormonal changes, friendships and educational demands. There is so much expected of you so young.’

Further information

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Elizabeth Holmes is a writer and researcher in education. She has taught in secondary schools in London, Oxfordshire and West Sussex and has written many books, particularly for NQTs and on teacher well-being. She is currently an associate lecturer at the University of Chichester. @EA_Holmes.

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Elizabeth Holmes is a writer and researcher in education. She has taught in secondary schools in London, Oxfordshire and West Sussex and has written many books, particularly for NQTs and on teacher well-being. She is currently an associate lecturer at the University of Chichester. @EA_Holmes.

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