“We’re not pushing her; we’re letting her do as much as she feels able”

This information is for teachers who may have responsibility for a student of any age who is ill with Myalgic Encephalopathy (ME), sometimes known as Chronic Fatigue Syndrome (CFS) and occasionally known as Post Viral Syndrome (PVFS) and tries to answer the complex question,

How do I cope with a student with ME in my class?

Whether moving from another class or returning to school after an absence, the planning and preparation is the same.

A student with ME, anticipating joining your class, may be newly diagnosed and attempting to maintain contact with school and friends or may have been absent for months or years and attempting a reintegration programme. Whatever the situation, the experience can be positive if the professionals responsible are supportive.

Each student with ME is an individual.

Although the symptoms of ME can be generalised, their severity and effect varies enormously and each young person will have an individual set of needs. Over time, the student and their primary carer have become experts in the effects of the illness and their expertise needs to be acknowledged and tapped into.

As the teacher of an ill student, you have become particularly closely involved in their life and that of their family. You have become a member of the team. The family inevitably the central focus in supporting a sick student with the mother usually taking on the role of primary carer. As a family, they may already have been through difficult experiences, perhaps trying to get a diagnosis from disbelieving medics; trying to persuade the local authority to provide home tuition; convincing the welfare officer of a legitimate absence; enduring assessments by social services, educational psychologists, community medical officers; attending review meetings.

Whether these episodes have been positive or negative, both students and family will inevitably be concerned about the experiences to be faced at school.

Schools are noisy, busy and hectic at the best of times. Dr. David Bell, an American ME Specialist, described its effect on ME students as the equivalent of being in a shopping mall just before Christmas. You will appreciate how exhausting that can be!

What preparations do I need to make?

To make it a positive experience, preparations to attend school sessions need to start early.

1. Find out as much as you can about the illness – teachers need to be well informed about the symptoms and effects in order to help with the negotiations. This information is available through ME North East.
2. Talk to the student and their family – find out how the illness affects the individual student. Be on their side. Perhaps because of previous experiences, their reaction to you may be initially cautious but they will welcome someone who is trying to understand and help.
3. Be flexible – attending school whilst ill or trying to reintegrate is a daunting experience. It is important that the student is not over stretched. Twenty minutes, a couple of times a week may be enough. It may though, be too much.

“Please believe me”

The most important thing to bring young people with ME is to be believed. All too often they have had to deal with professionals who are dismissive and uninformed. This can lead the setting of unsuitable and unrealistic goals. By believing the student and listening to the whole family, you will become an effective member of the team responsible for the care and rehabilitation of a young person. You will earn their trust.

What considerations must be made?

A visit to school is an exhausting business. Getting ready, putting on a uniform, travelling in the car, the anxiety of experiences to come and finally walking down corridors to the classroom mean that valuable energy has already been spent. This must be understood and taken into consideration when deciding the nature of the sessions the student is going to attempt.

1. When can the student visit? Many students with ME have a time during the day when their symptoms are less severe. Obviously, the student needs to attend when energy levels are at their best. Altered sleep patterns are a very common symptom. Do the sessions fit in with the pattern?

2. What is the purpose of the visit? Is it social? Is it to sit in on a ‘gentle’ subject? I s it to study a particular subject? Is it a subject the student enjoys? Is continuity in one or two subject areas as issue? Following only one or two subjects may give a greater feeling of achievement and worth.

3. How long should the visit last? This is the most important question. Spending too long at school can cause a relapse and lead to days in bed recovering. This may affect plans for the next visit. Caution and gentle pacing of sessions is of primary importance. Over-enthusiasm at the outset can wipe out future plans. It is important to realise that, at the start of their illness, the student may deteriorate over weeks and months as the illness takes a hold, making school visits less certain.

4. If this is a social visit, can we make it easier? Is there a quiet room? Is it more appropriate to have just a few friends involved? If it’s the whole class, is there a time when the noise in the classroom is down to a dull roar?

5. Is this a study session? Should the student arrive five minutes before the start of the lesson to avoid crowded corridors? Should they leave five minutes before the end? Do they need to carry books? What sort of chair is the student sitting on? Half an hour sitting on a comfortable chair takes less energy that sitting unsupported on a laboratory stool.

6. How much information can the student absorb? The cognitive symptoms of ME affect both short term memory and concentration. The effort of learning affects energy levels.

7. What happens if the student needs to end a session early? Most young people with ME are reluctant to say when they feel ill and that a session needs to end early. Normally, students will try to work through their deteriorating symptoms before collapsing when they get home. A white face, glazed expression and slumped body are among the signs that a student has done too much and needs to leave. Students should not be pushing themselves to the end.

8. Do the lights need to be on? Many students with ME complain that fluorescent lighting makes them dizzy and disorientated.

9. Have all members of staff been informed? How many will have contact with the student during each visit? Have they been informed of the student’s special needs? As the visits increase, it may be useful if the student carries a card informing others of the special arrangements.

10. Have classmates been informed? The reaction of other students is always an anxiety and needs to be considered. Bullying is not unknown. Unhelpful or unsupportive attitudes by other students can make visits too difficult to deal with.

11. Can you persuade PE teachers to curb their enthusiasm? Students should NOT do PE. Even the walk to the playing field, just to sit and watch is energy draining and not worth the effort. Nor should they be occupied be delivering letters around the school, as has happened in the past.

Monitoring the effects of the visits

Once school attendance has begun, it is important to acknowledge that any visit is going to be exhausting, no matter how short, well controlled and supportive. It will certainly mean the student needs a recovery period between sessions. Recovery time will depend on the current level of illness, the level of activity within the sessions and whether the sessions are sensibly spaced.

Flexibility and monitoring of sessions is vital. It may be possible to increase them gently, in line with energy levels and recovery rates. On the other hand it may be necessary to reduce their length or space them further apart. Sometimes sessions may need to be stopped altogether if the student finds the rise in activity exacerbates the illness. There may well be periods when the illness worsens and the student does not appear at all for some time.

Monitoring needs to be done in conjunction with the student and the carers. It is they who deal with the after effects. Typically, students with ME will try hard not to show their illness in the classroom and can appear disconcertingly well. This can lead to a misunderstanding of the student’s real level of illness. The truth is they often collapse when they arrive home. The student and their primary carer can tell you how they felt after returning home and how long the recovery took. A diary can be a useful discussion tool.

The aim is no to put the student on a roller coaster ride of remission and relapse but to pace sessions so that they recover in an acceptable time and are able to attend the next session.

What about the student who is too ill to attend school?

Sometimes the severe symptoms of ME can prevent attendance at school. These students long to be with their friends and to be able to carry on with their life. Friends often find the situation confusing and are unsure how to deal with the illness. Inevitably their own lives move on and often they stop calling.

As discussed above, teaching staff need to be well informed about the illness and its symptoms. Visiting the student at home, bringing news and cards from school and friends, is always appreciated. Keep the visits very short and gentle to check with the family before you arrive that the student is well enough to cope with a short conversation. Talk to the student and their primary carer about how the illness is affecting them. Ask the family if they would like to continue to receive letters about school activities. Keep the rest of the class up to date and remind them that the absent student is still a part of the group. Encourage particular friends to stay in contact. If e- mail is possible, this is an ideal way for the student to really feel part of the school day.

You may need to liaise with home tutors or parents about providing work. By providing books promptly, the student will feel valued and supported by the school system. A quick personal message inside the book sending best wishes would mean so much.