Although there is no cure for chronic fatigue syndrome there are a number of ways to help manage your symptoms.
Because of the complexity of the illness, its changing nature and the number of possible symptoms, different things work for different people. Your GP may be able to support you through managing your individual symptoms. They may be able to refer you to a specialist service or to a service that will help you to manage individual symptoms but this depends on the services available in your area.
To decide what treatment is right for you, you should look at the evidence, including published research and patient surveys, and make sure you fully understand what the treatment involve, before you make a decision. You have the right to decline any treatment option you do not feel comfortable with.
Your GP may suggest some of the following treatment options.
Management of medicines
Your GP may suggest reviewing and altering the medicines you receive, considering any other conditions you may already be receiving treatment for alongside the most important ME/CFS symptoms that need to be treated.
Your GP may also need to consider the combined impact of medication for symptoms and possibly for managing other conditions, especially as sensitivity to medicine is a feature of M.E. This could mean there may be issues around polypharmacy (use of many medications) for your health professional to consider.
Your illness may make it more difficult for you to make sure that you receive the right balance of nutrients in your diet due to loss of appetite and food intolerances. Your GP may be able to advise you on how you can alter and adjust your diet.
Disability support advice
Your GP may work with you or refer you to another therapist to suggest aids, activities or support that can help you to recover or adjust so that you can live to your full potential.
Balancing periods of activity and rest and noticing what activities demand most from you, can allow you to reduce the number of episodes of post-exertional malaise (PEM). Pacing yourself involves stopping activities before you feel the impact so that you have energy in reserve. It’s easy to do too much on a good day and then feel the impact later. It can take time to change your habits and stop doing something even while things are going well. However, doing this is key to managing your condition in the long term. A booklet on pacing is available from Action for M.E.
Graded exercise therapy (GET)
GET aims to gradually increase your ability to function and manage symptoms. It should always be carried out by a therapist who is experienced in chronic fatigue and has appropriate clinical supervision.
GET has been recommended by NICE guidelines, however these are currently under review. There’s a possibility that this could cause harm to some people with M.E. (especially severe cases) so you should make an informed decision about using this treatment.
In a study by Action for M.E, only 6% of people said GET helped to manage their symptoms, 13% said it made them worse and 38% said it worsened their symptoms.
Counselling can support you to adjust to the impact chronic fatigue can have on your life. This does not mean that the condition itself is psychological or "made up".
Cognitive behavioural therapy (CBT)
CBT has been recommended by the NICE guidelines, however these are currently under review. Action for M.E.’s 2019 Big Survey of more than 4,000 people found that 41% said that it made no difference in managing symptoms and 13% said it worsened their symptoms.
If you decide to try CBT, it’s essential that your health professional understands the condition and how it affects you.
CBT can sometimes be used to help changes in mood that can come with having a long-term condition
Alternative and holistic therapies
Alternative or holistic therapies may provide some comfort to those with a long standing illnesses but be cautious of any method that claims to offer a cure for chronic fatigue. If the therapy has not been published in respected peer-reviewed journal or is expensive you should talk to your GP before trying it. Until further research is done, no-one can be certain whether someone with CFS/ME might benefit from alternative therapies.
Living with chronic fatigue
What can I do for myself?
There are some things that you can do for yourself to help you manage the condition and still live your own life. Small changes can build and make a difference to your energy and mobility. This is called self-management.
To help with this, you might try:
- Planning your time – record what you do so that you can build a picture of what uses more energy and what activities you can ask others to do for you. This will help you choose what is important to you and plan your day to achieve this. It will also show you if there are patterns of symptoms and when they appear during your day
- Rest and relaxation – this is very important for managing CFS/ME. You may need some support and advice on what that might mean for you in terms of your physical, mental and emotional activities for resting
- Getting support – being open with people and asking for help when you need it before you are exhausted is a key approach to managing your condition. Talking about how you are feeling is important for long term health conditions because of the impact your symptoms have on the way you live your life. While you are adjusting to the diagnosis and the change in your life, it may be helpful to get outside support such as counselling or CBT. Talk to your GP about emotional support available to you.
Where can I get support?
Even in its mildest form, chronic fatigue can have a significant emotional and financial impact on your life. A lack of understanding and awareness about CFS/ME means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.
People need wider support in order to continue to manage aspects of their life. Information on entitlements to welfare benefits, accessing health and social care and others sources of support for patients and carers are available from Action for M.E.
Action for M.E. has a number of booklets that may be useful for people living with CFS/ME, their families and their health professionals. They also offer resources and services for children and young people affected by chronic fatigue and their families.
In some regions of Scotland there are local support groups providing peer support, information and advice. ALISS, Action for M.E.’s service directory and Peer Support Network and the M.E. Association can assist with signposting to these groups.