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What is chronic fatigue syndrome (ME/CFS)?
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a complex condition that affects multiple parts of the body. It can make doing normal activities such as work or school more difficult. It’s more than just feeling tired, because with ME/CFS sleeping doesn’t help.
Treating ME/EFS involves managing the amount of energy you use, but there is currently no cure for it. In this article, I talk about what ME/CFS is and how it can be managed.
What is the main cause of chronic fatigue syndrome?
The exact cause of myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), is not yet completely understood. Some theories are that it is a result of a virus, a problem with your immune system, or it could be related to hormones.
Many people with ME/CFS are generally healthy before developing ME/CFS. It’s not caused by emotional stress or another condition you might have.
What are the symptoms of chronic fatigue syndrome?
ME/CFS symptoms include extreme tiredness after activity that does not go away with sleep or resting. You may find it hard to do your normal activities such as work, school, or having a social life. You might find that you’re tired all the time, or you may experience flare-ups where tiredness symptoms come and go.
Along with tiredness, other ME/CFS symptoms include:
- forgetfulness or confusion
- sore throat
- muscle and joint pain
- headaches
- dizziness
- problems with balance
- flu like symptoms
- unrefreshing sleep
Is there a chronic fatigue syndrome test?
There is currently no specific test for ME/CFS. If you have fatigue symptoms, your doctor will need to do tests to rule out other conditions. You may get a ME/CFS diagnosis if your fatigue symptoms have lasted longer than three to six months. For children, this is three months.
Once you’ve been diagnosed, you’ll be referred to a specialist team. They will confirm the diagnosis and develop a care plan for managing the condition.
Is chronic fatigue syndrome considered a disability?
The Equality Act protects people who have a disability from discrimination – for example, at work. The Equality Act defines disability as having a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on someone’s ability to do normal daily activities. ME/CFS falls under this definition, but not everyone with ME/CFS will be classified as having a disability.
In any case, if you have ME/CFS and are considered disabled, then you are protected by the Equality Act. So, for instance, if you work then your workplace needs to make reasonable adjustments so that you are not disadvantaged. Adjustments may include:
- allowing you to work from home
- reducing your workload
- agreeing suitable work hours
- reducing physical tasks
- providing practical aids or equipment
Is there are way to fix chronic fatigue syndrome?
There is currently no cure or medicine you can take for chronic fatigue syndrome. ME/CFS treatment aims to help manage your symptoms.
One way of coping with ME/CFS is energy management. This means setting up the daily limit of energy you use on all kinds of activities including physical, mental, and social. You’ll need to make sure not go over the energy amount you’ve set, otherwise this may worsen your symptoms.
You can discuss with a health professional what your daily routine will be and you may be able to gradually increase the energy amount.
One way of managing energy is pacing. This is when you divide your daily activities with periods of rest in between. Pacing can help you to understand your energy levels and gain stability and a sense of control over your day. You should only do exercise that has been agreed with your ME/CFS team.
There is also mental health treatment for ME/CFS, such as talking therapies. An example is cognitive behavioural therapy (CBT). In CBT, you work with a therapist to challenge thoughts and behaviours. This type of treatment can help if need psychological support in managing your ME/CFS symptoms.
Chronic fatigue syndrome affects people differently. Many people find that their symptoms improve over time and some recover completely. But some people may find their symptoms get worse.
There is no known cure for ME/CFS. It’s important that you follow the care plan that you’ve made with specialists, and understand your energy limits. This, along with mental health support if you need it, will help you live with ME/CFS.
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Sources Sources
- General Information. The ME Association. meassociation.org.uk, last accessed July 2023
- Tiredness/fatigue in adults. NICE Clinical Knowledge Summaries. cks.nice.org.uk, last revised October 2021
- NICE guideline [NG206] Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE.nice.org.uk published October 2021
- Myalgic Encephalomyelitis. Patient. patient.info, last updated November 2021
- Myalgic encephalomyelitis (Chronic fatigue syndrome). BMJ Best Practice. bestpractice.bmj.com, last reviewed June 2023
- Musculoskeletal problems. Oxford Handbook of General Practice (5 ed, online). Oxford Academic. academic.oup.com, published June 2020. doi: 10.1093/med/9780198808183.003.0014
- Definition of disability under the Equality Act 2010. gov.uk, last accessed July 2023 https://www.gov.uk/definition-of-disability-under-equality-act-2010
- Disability classification. The ME Association. meassociation.org.uk, last accessed July 2023
- M.E. and work. Action for ME. actionforme.org.uk, last accessed July 2023
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