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What's the evidence for children with M.E. using GET?

Please be aware that given recent publications and emerging evidence, this page is currently under review.

Although national guidance recommends that children with M.E. are offered activity management, cognitive behavioural therapy, or graded exercise therapy (GET), there is no peer-reviewed evidence that shows how effective GET is for children with M.E.

Anecdotally, some children and young people report that they have found GET helpful. Others say it has not made a difference, and some say that it has made their symptoms worse.

The aim of this page is to offer information about GET, so children and young people with M.E. and their parents can make an informed decision.

Is GET right for me?

An effective GET programme should always be overseen by a qualified physiotherapist (physio) or occupational therapist (OT) who has experiencing at supervising GET programmes for children and young people with M.E. Often these are based at an NHS M.E. service. You can search our services directory to see if there might be one near you.

An experienced physiotherapist or occupational therapist should aim to support you to:

  • set goals that are important to you, such as getting out of bed, walking to school or seeing friends
  • find a daily routine by helping to get the right balance between activity and rest
  • find your baseline, that is, what physical activity you can do regularly without making your symptoms worse
  • increase physical activities to help improve strength: anything from daily tasks like getting up and dressed, to physical exercise, like walking to the shop
  • understand and control symptoms better
  • look at your sleep hygiene and support you to improve when and how you sleep
  • manage difficult or upsetting events and the effect these might have on your symptoms
  • talk with your school or college: help plan lessons/homework, deal with exams.
  • help your family and friends to understand and support you.

There are different reasons why GET may be helping some people to get better. Some will work for one person, while others may work for another. Graded exercise can have an effect on things that are thought to delay people with M.E. getting better (called ‘maintaining factors') by improving:

  • physical strength
  • physical fitness
  • symptoms, such as fatigue and muscle pain
  • sleep
  • your ability to think more clearly (‘cognition')

It might also help you to feel more relaxed, do more activity, create a sense of achievement, control your weight and help you feel better about your body.

What is the difference between graded activity and graded exercise?

A physical ‘activity' is often exactly the same as an ‘exercise'. The main difference is that exercise causes an increase in heart rate and breathing rate (which is known as an ‘aerobic' effect) that will improve your fitness. GET programmes often start off with physical activities that aren't exercise; but once these can be managed for a reasonable length of time they be increased very gradually to become an aerobic exercise.

For example, a walk may not make your heart rate go up by much if it is very slow, but if you gradually begin to walk faster, you'll gradually improve fitness as well. If someone is more severely affected, rolling, sitting up, or moving arms and legs gently in bed might be the starting points.

What goes GET involve?

If you were to work with a physio or OT to undertake GET, they should start by asking about the activities that are really important to you, and the things that you really need or want to do in your daily life.

They should then suggest, discuss and agree specific exercises/activities with you, starting at a level that you know you can manage every day, even on your bad days, on at least five days out of seven. If it can't be done every day, then the starting level is too high.

It might be that you begin with gentle stretches, as these can help muscles to feel more comfortable and help prepare them for activity. You might work with your physio to plan a stretching programme even before you look at adding activity. Some people find gentle yoga stretches particularly helpful.

Some children and young people with M.E. start their GET programme with walking, because it is one of the most important activities we do in our lives. Those interested in sports might like cycling or swimming. Those who struggle to walk or get out of bed might start by moving their head or arms/legs gently in bed, or perhaps rolling over once an hour.

Once this can be done regularly (this should feel OK, because the level you choose should be fairly easy), the physio and OT should work with you to help you slightly increase the length of time you do this activity for. They might use a heart rate monitor or a chart to help you both measure how hard the physical activity feels for you, which will make it easier to work out how to increase slowly and comfortably. The increases should be very small, so a five minute sit in a chair might become six minutes - an increase of around 20%. An increase from five to ten minutes would not work, as this is an enormous 100% increase.

Getting started might feel difficult, possibly creating some feelings of stiffness or fatigue. After a few days of maintaining the activity at the increased level, the effect should be that you notice your symptoms improve, as your body changes and gets stronger.

At this point, the advice from the physio or OT should be that you stick to this level of activity until you are used to it and it feels OK. This means aiming to do it when you're not feeling so great, something your physio and OT should talk to you about. It's helpful to remember that this should be fairly easy as you chose a level that was OK even on your bad days. Your physio or OT should also explain to you that it's important not to go above the level of activity, even on your better days, because the programme needs to be regular for you to improve. Patience and keeping your brakes on can be just as important as increasing activity.

When what you are doing consistently feels OK, your physio or OT should work with you to agree another small increase. This will then be repeated to build up the activity you are doing, over a number of weeks or months – your progress should be slow but steady.

As part of the GET programme, your physio or OT might also encourage you to strengthen your muscles, maybe through a set of exercises that are appropriate for you, or through activities like cooking, or taking care of some plants by watering them every day.

Like anything you do, if you ask your body to do too much (to hard or too fast) it may cause a setback. That's why it is so important to work with your physio or OT to set a pace you can easily manage, and not go for it too quickly. If you do have a setback after exercise, you may need to find a different starting point. Everyone is different; it is a case of trial and error, and it can take a while to get it right.

As with any symptom management approach, it's really important to tell the professional you are working with about how you feel and how the programme is going for you. As well as highlighting things that are working well, you should always tell your physiotherapist if:

  • your programme contains anything you are not keen on
  • you are finding your programme really difficult
  • you are worried about your symptoms, or about what it feels like to exercise
  • you are finding something painful and it is getting worse
  • you are not sure why you are doing something
  • you don't understand what the physiotherapist is saying
  • there are problems or things stopping you from doing your programme, such as too much homework, or feeling fed up

You may find keeping a diary of questions and answers helpful, as well as a record of your programme.