Managing CFS/ME

If you have severe CFS/ME, your healthcare professional should get advice from a specialist.

General advice

Your healthcare professional should fully explain and discuss all the options for managing your CFS/ME with you, and work with you to develop a care plan that suits you. If you have severe CFS/ME, your healthcare professional should get advice from a specialist.

There are no drug treatments for CFS/ME itself, but drugs can help with symptoms such as pain.

Diet and supplements

Your healthcare professional should advise you about the importance of eating a healthy balanced diet, with regular meals. They should help you work out ways of doing this if practical difficulties with shopping and preparing food or symptoms of CFS/ME are making it difficult.

If you have nausea (feel sick), you should be given advice about snacking on starchy foods, eating little and often, and sipping drinks slowly. If this doesn't work, and your symptoms are particularly severe, you may be offered drugs to control the nausea.

Special diets that exclude particular types of food are not generally recommended for people with CFS/ME. If you are planning to try one, your healthcare professional should get advice from a dietitian.

There is not enough evidence on using supplements such as vitamin B12, vitamin C, co‑enzyme Q10, magnesium, NADH (which stands for nicotinamide adenine dinucleotide) or multivitamins and minerals as a treatment for CFS/ME, and your healthcare professional should not prescribe these. If you take them, it is important to stay within the safe limits recommended by the Food Standards Agency. There is more information at: www.nhs.uk/Livewell/healthy-eating/Pages/Healthyeating.

Sleep, rest and relaxation

Your healthcare team should explain that people with CFS/ME often have changes in their sleep patterns that may make their symptoms worse. Common problems include being unable to get to sleep, having unrefreshing or restless sleep, needing excessive sleep, or needing to sleep during the day and being awake at night.

You should be given practical advice about establishing a normal sleep–wake pattern, because too much sleep generally does not improve other symptoms of CFS/ME, and too much sleep during the day can stop you sleeping at night.

Changes to your sleep pattern should be made gradually and your healthcare professional should review the situation regularly. If techniques to improve your sleeping pattern don't help, they should consider whether you have an underlying sleep problem.

You will probably need to take rests or breaks during the day and your healthcare professional should also give you advice about the best way to do this. This may include limiting the length of each rest to 30 minutes and teaching you how to use relaxation techniques. Your healthcare professional should also ask you about your rests regularly to make sure they are still as helpful as possible.

Rest for people with severe CFS/ME

If you have severe CFS/ME and need to spend much of your time in bed during the day, your healthcare professional should discuss this with a specialist. It can cause problems, including pressure sores and blood clots, as well as loss of strength in your muscles. These problems, and ways of reducing them, should be explained to you and your carers, and you should have regular checks to make sure these problems are not developing.

Equipment

If your symptoms are moderate or severe, your team should consider if you need any equipment or adaptations to improve your quality of life or independence, such as a wheelchair, blue badge (for parking concessions) or stairlift. This should be done as part of your overall management plan, taking into account the benefits and any possible risks for you individually.

Work and education

Your healthcare professional should be able to provide advice about work or education when you are ready and fit enough. With your agreement, your healthcare professional should give (or help you give) your employer, school or college information about your CFS/ME and how you are being cared for. They should suggest changes that could be made to help you get back to, or stay at, work, school or college and should contact organisations that can help with this, such as Job Centre Plus, your occupational health department and advisers at your local education authority.

What about other techniques?

Exercise

You should not be advised to take vigorous unplanned or unsupervised exercise (such as going to the gym or for a run) because this may make your symptoms worse.

Dramatically reducing activity or resting completely

Some people with CFS/ME have tried doing far less activity than they are capable of to allow the body spare energy to heal itself. But at the moment there is no evidence from research that this helps. There is also no research evidence that resting completely is helpful when symptoms are worse than usual (see Setbacks/relapses).

You should also not be advised to take complete rest or more daytime rest if your symptoms get slightly worse, or to follow a rigid schedule of activity and rest.

Pacing

Another type of technique that many people with CFS/ME find helpful for managing their symptoms is 'pacing'. Different people use the word pacing to mean different things, but the general aim is to balance rest and activity to avoid making your fatigue and other symptoms worse. Research is being done into pacing, but as yet there is not enough evidence about whether this improves CFS/ME or whether it has any risks. Many of the ideas of pacing are used in activity management, cognitive behavioural therapy and graded exercise therapy with the support of a specialist who will help you find the right levels and types of activity for you (see Activity management).

Complementary medicine

There is not enough evidence about whether complementary medicine is helpful for CFS/ME for healthcare professionals to recommend it. If you do want to try, you should use a registered therapist who has experience of working with people with CFS/ME.

Questions about management and support for CFS/ME

  • Can you suggest ways to help me sleep better at night?

  • Can you give me more information about relaxation techniques?

  • Can you give me any advice about benefits?

  • How will I know when it is the right time for me to go back to work or education?

  • What can be done to help me with work, or going back to school or college?

  • What support will I receive?

  • What happens if I have a relapse or my symptoms get worse?