Graded Exercise Therapy (GET)
What is Graded Exercise Therapy?
GET is the use of regular, physical exercise to help recovery from ME/CFS. Exercise can help improve energy levels, reduce pain, improve sleep, and generally make you feel better in yourself.
Physical exercise may seem like a strange thing to do for someone who has ME/CFS, especially if you are struggling to carry out activities like dressing yourself. But if getting dressed also makes you feel a bit breathless, then that could be exercise too; so could having a shower, walking to a shop, or helping out at home.
GET should always start at the point you are at now, whether you spend most of your time in bed or whether you are more active. What you do in GET is really up to you and what you want to achieve. If you would like to be able to get out of bed, GET could help to improve your strength and movement to allow you to do this. If you would love to be able to walk round the house or go to school, GET would aim to help you gradually build up your strength and fitness to achieve this.
An effective GET programme will be discussed between yourself and a physiotherapist, and should take into account what you can do now, as well as other important things like sleep and setbacks.
What can the therapist use GET to help with?
Most physiotherapists (‘physios') and occupational therapists (‘OTs') working with ME/CFS will be able to help you:
- Set goals that are important to you, such as walking to school or seeing friends.
- Find a daily routine: 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 the difficult or upsetting times.
- Talk with your school or college: help plan lessons/homework, deal with exams.
- Help your family and friends to understand and support you.
What good can it do for people with ME/CFS?
There are different reasons why GET may be helping some people to get better. Some factors will work for one person, while other factors may work for another person. Exercise can work on many things that are thought to delay people with ME/CFS getting better (called ‘maintaining factors'), such as:
- Improve physical strength.
- Improve physical fitness.
- Help you to do more activity in your day.
- Improve symptoms, such as fatigue and muscle pain.
- Improve sleep.
- Improve ability to think more clearly (‘cognition').
- Help you to feel more relaxed.
- Create a sense of achievement.
- Improve relationships with friends and family and enable you to do things together again.
- Control your weight and feel better about your body.
Can exercise make me worse?
Any activity that is too difficult for your body can increase symptoms and make you feel worse. To ensure that this doesn't happen, it is essential to start activities at a low level and then build up very gradually. When you start at a level you can easily manage (even on your worst days) and build up slowly at a rate that is right for your body, symptoms are controlled and kept to a minimum.
Action for ME did a survey that showed that lots of people felt worse after exercising, but this was probably because they started at too high a level, went too quickly; or tried an exercise programme by themselves (or without the right expert help). Also, some people find it hard to manage the routine of GET, or they get worried about feeling tired or stiff after exercise, and so stop the programme without first working out if anything can be changed to make it work better for them. In fact, feeling a bit stiff and tired after exercise or activity is a good sign that your body is adapting and getting stronger. So, if you don't feel anything at all, nothing is happening - which means you won't be getting stronger, and your body is likely to stay as it is or even lose fitness and strength.
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 activity should I start with?
It's important that you don't start any programme unless you are working with a physiotherapist who has experience in ME/CFS, as well as being cleared by your GP first. Don't try GET using this article alone.
If you can't find someone familiar with ME/CFS, all physios will certainly know about graded exercise, so you can take this article to show them if you like. And remember, you should report any new symptoms or injuries to your physio or GP.
- Gentle stretches are often a good start, 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.
- Talk to your physio about the activities that are really important to you, or things that you really need to do in your day.
- Activity is started 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.
Many people start 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 length of time you do this activity for can be increased slightly. The increases are very small, so a five minute sit in a chair becomes six minutes. An increase from five to ten minutes would not work, as this is an enormous 100% increase. Our bodies tend only to be happy with increases of around 20%.
Getting started might seem difficult, possibly creating some feelings of stiffness or fatigue. After a few days of maintaining the activity at this new level, these symptoms usually feel better as the body changes and gets stronger. Gentle stretches can help loosen off any stiffness and keep you supple, especially if you do them after a warm bath.
Keep 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. Remember: this should be fairly easy as you chose a level that was OK even on your bad days, and – and this is sometimes the really hard part – it's also about not going over this planned level on your better days. This is really important because if you go over your planned level and you feel awful the next day, then you can't continue on with your programme and get stronger. The programme needs to be regular for you to get better.
Once what you're doing consistently feels ok, another small increase in time can be added. When you can do an activity for a good length of time at a comfortable pace, such as walking for 20–30 minutes, you can then start working your body a bit harder. This might mean walking slightly faster for part of the time. This could take anywhere from weeks to months – your progress should be slow but steady.
Patience and keeping your brakes on may be just as important as increasing activity.
Many people find it difficult to work out how to much to increase their activity by, especially as some normal feelings caused by exercise can feel a bit like ME/CFS symptoms. Your physio 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.
Your physio might also encourage you to strengthen your muscles, possibly through a set of exercises. Again - start low, move on slowly. Or you might choose other activities that will help you to get stronger, such as helping out with some cooking, or maybe taking care of some plants by watering them every day.
Can exercise cause a setback?
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 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.
What do I do if I have a setback?
During a setback, it's a good idea to keep doing as much activity as you can still manage, to make sure you don't lose fitness and to stop your muscles getting weaker and tighter. Relaxation techniques or doing gentle stretches may be useful.
Gradually and carefully returning to normal activity levels is then important to make sure your strength picks up again. If you find you can't get back to your normal activity levels, then talk to your physio or doctor. Sometimes this could be down to not enough sleep; feeling stressed, worried or negative; or maybe having an infection.
Getting the best out of physiotherapy
Your programme will only work if you tell your physio honestly how you feel and how you are getting on. 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.
How to find a physiotherapist
Your GP or specialist should be able to refer you to a physiotherapist. Local ME Groups might know of one in your area. Also, keep an eye out for the new CFS/ME services that have been running around the country from April; your GP should be able to refer you and apply for funding. You can also try the Chartered Society of Physiotherapy web site www.csp.org.uk where you can find links to national physiotherapy services or practitioners.
GET was examined on the PACE research trial – read more on the findings here.
GET is based on planned physical activity that starts slowly and gradually increases, with the aim of avoiding boom-and-bust (or no exercise at all).
Exercise has been used for many years to help people with fibromyalgia, multiple sclerosis and other similar conditions. There are still some doubts about as to how much help GET really is, and there have been studies made by those working more closely with the condition that have called its effectiveness into question. Experience suggests that Graded Exercise Therapy (‘GET') can be helpful so long as it is done properly and supervised by an appropriate healthcare professional. Bear in mind that although research has shown that carefully graded exercise can help ME/CFS in adults, no research has yet been published for children and adolescents.
For more information, you may want to read about the PACE trial results.
If you choose to try GET (and it is your choice), it should be delivered on a one-to one basis by a suitably trained GET therapist with experience in CFS/ME, under appropriate medical supervision. It should also be based on a partnership between you and your therapist, where you agree all treatments (and changes to them) together. How long and how much you exercise (which can be anything from small movements and stretches upwards) is based on you stopping before you become tired.