Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord.
Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn’t go away with sleep or rest.
Both CFS and ME are commonly used terms.
Sometimes the term ‘myalgic encephalopathy’ is used. Encephalopathy means a condition that affects brain function.
CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.
What is M.E.?
M.E. is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems. Many people will seek medical advice at some time because they experience persistent fatigue or pain. However, M.E. is characterised by a range of additional symptoms which can significantly affect your ability to live a normal life.
What are the symptoms?
Symptoms vary but may include persistent exhaustion (‘fatigue’), muscle and/or joint pain, sleep disturbance, ‘flu-like symptoms such as headache, sore throat, painful lymph nodes, dizziness and/or nausea and problems with memory and concentration.
Who does M.E. affect?
Men, women and children of all ages and of all social and ethnic backgrounds can develop M.E., although it is most common in women aged 25-50. It is thought that around 250,000 people in the UK have the illness.
What causes M.E?
We don’t fully understand what causes the illness. There are likely to be a number of factors involved. It sometimes affects more than one family member. The reasons are being studied but it seems your genetic make-up can play a part, as can the influence of your environment. There is evidence that certain infections can trigger M.E. Many are viruses but M.E. can be triggered by other types of infection. Many of the infections which trigger M.E. seem to be ordinary flu-like infections, from which some people don’t recover in the normal way.
How is M.E. diagnosed?
There is no medical laboratory test currently available to detect M.E. Doctors diagnose the illness by assessing your medical history, recognising the typical symptom pattern of M.E. and conducting basic tests, for example on blood or urine samples, to rule out other conditions. Many illnesses can sound quite similar in their symptoms and excluding other conditions is a usual part of the process of reaching a diagnosis.
You may need to make several visits to your doctor before a final diagnosis is made. A provisional diagnosis should be made as early as possible.
NHS guidelines say a diagnosis should be made in adults if symptoms have lasted four months and other diagnoses have been excluded. In children or young people, diagnosis should be made (or confirmed by a paediatrician) after three months.
The earlier that your illness is recognised, the sooner you can begin to manage and treat your symptoms.
How is M.E. treated and managed?
There are no wonder drugs or treatments that can cure M.E. but there are many approaches open to you and your doctor that can make a difference to how you feel and give you back control over your situation.
In 2007, the National Institute for Health and Clinical Excellence (NICE) published a clinical guideline on the diagnosis and management of CFS/M.E. for NHS healthcare professionals in England and Wales. The guideline is available via links on our Online M.E. Centre at www.actionforme.org.uk or directly from NICE at www.nice.org.uk
In Scotland, NHS Scotland has produced a Good Practice Statement for healthcare professionals, Quick Reference Guide for GPs and leaflet for patients, facilitated by Action for M.E. These documents are available on the NHS Scotland website www.show.scot.nhs.uk and via our Online M.E. Centre at www.actionforme.org.uk
It is important to establish a relationship with your doctor so that you can discuss all the management approaches available and ‘problem solve’ any issues together.
People with M.E. respond to treatment in different ways and what works for someone else may not be helpful for you, even if you share the same symptoms.
It is important to adopt one approach or make one change at a time, to find out what works for you.
If left untreated, symptoms such as pain, sleep difficulties and mood problems can take over your life and get in the way of recovery.
Your doctor and other healthcare professionals can treat and prevent symptoms by prescribing medication and perhaps suggesting changes in your lifestyle. NHS guidelines highlight cognitive behaviour therapy (CBT) and graded exercise therapy (GET), which were recently studied in the PACE trial.
You will also discover tactics for yourself as you understand more about how M.E. is affecting your body.
You are the best judge of how you feel, so don’t be afraid to discuss your treatment with your doctor, especially if you think it isn’t working. Each different approach takes time to work, so be patient and don’t expect results immediately.
It may take some time to find the regime that suits you best, particularly as people with M.E. are thought to be more prone to side effects. It is advisable that drugs are started at lower doses than would normally be prescribed, to minimise side effects.
Our booklet, All about M.E., contains detailed information about what is available, including chapters for people who have particular difficulties with pain, sleep disruption or mood problems such as anxiety or depression.
When will I get better?
People with M.E. can vary enormously in their experience of the illness, and also how long their symptoms last.
Many people make good progress quite quickly, while others can remain ill for a number of years. Most people improve over time, especially with treatment. For many, the illness fluctuates, with periods of remission and relapse. A small minority are severely affected (bedbound or housebound) for a long time.
People often find that they don’t go back completely to the way they felt before they became ill – but they do recover sufficiently and/or learn to manage their symptoms well enough to lead happy and fulfilling lives. This is similar to many other chronic illnesses.
Treatment (symptom management) can help by reducing symptoms and making the experience of illness much less unpleasant in the short term. More importantly, rehabilitative approaches that are suited to your level of severity can maximise the chances of recovery and the rate at which it happens, as well as reducing the risk of setbacks and relapses.
Hold on to hope, but be prepared in case the illness does last a long time.
Factors that can hold back recovery M.E. can be an extremely frustrating illness, particularly as the intensity of the different symptoms can fluctuate. Managing M.E. requires patience and self-control.
On good days, you will naturally want to do more – but do too much and 24 hours or more later, you may find yourself in a relapse from which recovery will seem painfully slow. This pattern is called ‘boom and bust.’ If it becomes the norm it can be very distressing and it can undermine your confidence.
There are also strong indications that this pattern can prolong the illness.
It is important to get to know your limits and to set yourself small, realistic goals for getting better. This may mean that initially you have to reduce your overall activity levels so that you can achieve a routine that you can sustain. You will achieve more by working within your limits and increasing activities very gradually, than by pushing the boundaries all the time. There are many small changes you can make on a daily basis that will improve your health in the long term.
The key to managing your illness is to ‘pace’ your physical and mental (including emotional) activity – to strike a balance between activity and rest and to make any changes in your routine small and gradual.
In the early stages of the illness in particular, or during a relapse, adequate rest may be necessary and helpful. It is important to think about the quality of your rest, not just the quantity. Many people with M.E. find it difficult to relax and therefore do not get the full benefit from their rest periods.
However, while rest is very important, doing too little or being totally inactive can be harmful. Prolonged inactivity can cause muscle wasting and weakness, making it even harder for you to perform everyday tasks. Some gentle activity, according to your limits, is important.
Find out about pacing in our Online M.E. Centre at www.actionforme.org.uk or request a copy of our booklet, Pacing for people with M.E.
Relapses and setbacks
During your illness you may experience periods of better health or well-being, but there may also be times when your health deteriorates.
Having a relapse or setback is not uncommon at some stage. Relapses can be mild or severe and can happen for many reasons, but often because of trying to do too much.
You will need to make changes in your daily routine to manage any setbacks.
Most importantly, you need to understand what is happening and to have a plan of what to do. Don’t be disheartened by these hiccups in your progress. Some people say that they experience relapses throughout their recovery but that over time they get shorter or less severe through learning ways to manage them better.
Just as a small step forward in your health doesn’t guarantee that you will immediately get better, a relapse doesn’t have to mean that the course of your illness is on a downward curve. It could be just a blip!
M.E. checklist
- Learn to manage your energy and physical, mental and emotional activities. Become an expert at managing your illness and stay in control.
- Deal with the major symptoms that can take over your life, such as pain, sleep disturbance and low mood. Uncontrolled symptoms can get in the way of recovery. Your doctor can help you to manage these with medication. Other strategies can also be helpful, such as pacing your activities, relaxation techniques and complementary therapies.
- Establish a relationship with your GP. This can take time and in some cases may be difficult, but the partnership between you and your GP can be crucial to stabilising your illness and enabling recovery.
- Remember that people do recover from M.E. Learn to recognise and accept your illness and recovery is more likely to follow in time.
- You are not alone. An estimated 250,000 people in the UK have this illness.
To get information and support join Action for M.E. online at: www.actionforme.org.uk or by calling 0845 123 2380.
Useful contacts
Action for M.E.:
Information and support for people with M.E. and their careers
General enquiries: 0845 123 2380 or 0117 927 9551 (Mon-Fri 9am-5pm)
Enquiries email: admin@actionforme.org.uk
Welfare Rights Line: 0845 122 8648 (times vary)
Online M.E. Centre: www.actionforme.org.uk
Association of Young People with M.E. (AYME):
Information, advice and support for people with M.E. under 26 and their families
Helpline: 08451 232389 (Mon-Fri 10am-2pm)
Website: www.ayme.org.uk
Carers UK:
A charity for carers, led by carers
Advice line: 0808 808 7777
E-mail: adviceline@carersuk.org
Website: www.carersuk.org
Carers Direct:
Information, advice and support for carers via the NHS
Helpline 0808 802 0202
Website: www.nhs.uk/Carersdirect
If you have found the information in this factsheet helpful, please consider making a donation to Action for M.E. at www.actionforme.org.uk or by calling 0845 123 2380 or 0117 927 9551.
Thank you.
