Specialist CFS/ME care

If you think that your care does not match what is described in this information, please talk to a member of your healthcare team.

Referring you for specialist CFS/ME care

Specialist care for CFS/ME is ideally given by a team of healthcare professionals with different areas of expertise. The team works together to diagnose and manage the condition. The team may include GPs with special knowledge of CFS/ME, hospital doctors specialising in the nervous system, the immune system, mental health, infectious disease and children's health, psychologists, dietitians, physiotherapists, occupational therapists and nurses.

Any decision to refer you to specialist CFS/ME care will be made jointly by you and your healthcare professional, depending on your needs and symptoms. You can be referred at any time, but if you have mild CFS/ME you should be offered a referral within 6 months of first seeing your doctor about the symptoms. You should be offered a referral within 3–4 months if you have moderate symptoms, and immediately if you have severe symptoms. Children and young people should be referred to a paediatrician for tests within 6 weeks of seeing their doctor about symptoms that could be caused by CFS/ME (see Reaching a diagnosis of CFS/ME).

Any general technique or therapy that you have found helpful should be continued after you are referred to specialist care.

Specialist care for people with severe CFS/ME

If you have severe CFS/ME, specialist healthcare professionals will be involved in planning and providing your care. Most people with CFS/ME will not need to go into hospital. But this may sometimes be helpful if you have severe CFS/ME. For example, if you are having a lot of tests or assessments, it may be less tiring to stay in hospital rather than make several trips.

You may also need access to other types of services provided in the community, such as nursing, physiotherapy or occupational therapy. One named healthcare professional should coordinate this.

Therapies used in specialist CFS/ME care

Some treatments may not be suitable for you, depending on your exact circumstances. If you have questions about the specific treatments and options covered in this information, please talk to a member of your healthcare team.

The aim of specialist therapy should be to help you with your symptoms and to maintain, or if possible gradually increase, the amount of activity you can do.

Your specialist team should explain what the different therapies involve, and their pros and cons, to help you reach a decision with your team. The decision should take into account your preferences, your age, and the symptoms you have and how severe they are. You will be in charge of how quickly to work through the therapy, and you and your team should regularly discuss how it is going and make changes if needed.

Some people may experience an increase in symptoms during these therapies. You should be advised to contact your healthcare team if this lasts more than a few days or is severe or distressing.

If you have mild or moderate CFS/ME you should be offered cognitive behavioural therapy (called CBT for short) or graded exercise therapy(GET for short). These are explained in more detail below. If you choose one of these therapies, you should be able to have it. But if neither is available or suitable for you, you may be offered some parts of them. You may also be offered activity management, and sleep management and relaxation techniques (see Sleep, rest and relaxation).

Therapy for people with severe CFS/ME

If you have severe CFS/ME, the main approach recommended is activity management, suited to your needs. This may be given at home, or by telephone or email. But some parts of the GET and CBT approaches may also be helpful for you. Your therapy should be reviewed regularly and often.

Questions about specialist therapies and medication

  • Please tell me why you have decided to offer me this particular type of therapy or medication.

  • What are the pros and cons of this therapy or medication?

  • Please tell me what the therapy will involve. How long does it last, and how often are the sessions?

  • How will it help me? What effect will it have on my symptoms and everyday life? What sort of improvements can I expect?

  • What happens if I have a sudden increase in symptoms?

  • What are my options for having therapies other than the recommended therapy or medication?

  • Is there a leaflet or tape about the therapy or medication that I can have?

  • What will happen if I choose not to take up the recommended therapy or medication, or decide to stop?

  • What happens if I have a bad reaction?

Cognitive behavioural therapy

CBT is a psychological ('talking') therapy used to help in many illnesses such as cancer, heart problems and diabetes. If you are offered CBT, it does not mean that your healthcare professionals think your symptoms are 'in your head'. The therapy should be tailored to your individual needs and symptoms, and your current level of activity. The therapy should be given by a trained healthcare professional who is supervised and who has experience of using CBT to help people with CFS/ME. Your CBT therapist should:

  • recognise your current symptoms

  • explain how CBT can help people with CFS/ME by linking thoughts, feelings, behaviour and symptoms

  • agree with you what your aims are

  • build a supportive relationship with you.

Your CBT therapist should also help you to:

  • become aware of and understand your thoughts, beliefs and behaviour related to your fatigue and your activity/rest patterns

  • find a stable activity level at which you can function, which can be followed by a gradual increase in activity (or decrease if necessary)

  • identify factors that may hinder your recovery and the way you manage your symptoms, such as feeling guilty about asking for help

  • understand symptoms better so that you worry about them less and don't focus on them as much

  • solve problems by learning to think in different ways

  • manage any sleep problems (see Sleep, rest and relaxation).

Graded exercise therapy

If you have GET, it should be given by a trained professional with experience of using it to help people with CFS/ME, and given one to one if possible.

Planning your graded exercise therapy

If you are offered GET, it should be discussed and planned with you. It should be based on your own current activities, circumstances, routines, sleep patterns, work or school commitments and hobbies. You or your carers might be asked to keep a diary of these to help with planning. Your healthcare professional should discuss your ultimate goal from GET (for example, sitting up in bed to eat a meal, walking to the shops, or getting back to cycling or gardening). It is important to be aware that it may take months or even years for you to reach your ultimate goal, so you and your therapist should agree some shorter-term goals.

Getting started

Your healthcare professional should first find out how much activity you are able to do normally (the 'baseline') and then agree with you a level of extra, low-intensity activity or exercise that you can manage, even on bad days. This might be sitting up in bed or brushing your hair, or a slow walk or gentle stretching. You should be encouraged to aim to do this activity at least 5 days a week or build up to this. This may slightly increase your symptoms for a few days, and your healthcare professional should discuss this with you.

The next stage

Once you are finding it fairly easy to manage the activity 5 days a week, you should be helped to try to gradually increase the time spent doing it. This should be done very slowly – for example, by increasing a 5-minute walk to 6 minutes – until you can manage about 30 minutes a day.

Over time, you may then be helped to work a little harder during the activity or exercise, with the aim of reaching a level at which you are increasing your heart rate, if possible. A trained professional should help you decide what level of activity or exercise is right for you, and you should be given a heart monitor to help you stay at the right heart rate level.

Where appropriate, you should be offered the chance to increase the exercise further if you wish, provided you are still able to manage other daily activities. When you have completed the therapy, you should be given support to continue using the techniques afterwards.

Activity management

When you start , you and your healthcare professional should first work out a 'baseline' level of activity that you can manage to do regularly. You may need to try doing less or more of certain tasks to find out what this level is. Once you have decided this, you should agree together how to gradually increase your activity level over time, to suit your own needs and goals. activity management

Your activity management should include:

  • planning your time so there is a good balance of daily activity, rest and sleep, and more difficult tasks are spread over the day or week

  • breaking activities down into smaller manageable tasks, which can gradually be built up

  • avoiding doing too much on a day when you are feeling well, and then having to reduce your activity because your symptoms have got worse

  • keeping a diary of activity, rest and sleep to help with finding your baseline, noticing patterns of over- and underactivity, and planning activity or exercise

  • discussing how resting can help with CFS/ME, including the amount of rest best for you, and how to plan rest periods into your day

  • regularly reviewing your activity levels and goals.

Specialist treatment for symptoms

If pain is one of your main symptoms, you may be offered a referral to a pain management clinic. Your CFS/ME specialist may offer you medication to help with symptoms, particularly sleep difficulties or pain. Occasionally, a child or young person may be offered a drug called melatonin to help with sleep problems. This should always be given by a paediatrician.