What are the Symptoms of M.E and Chronic Fatigue Syndrome?

What is M.E?

Myalgic Encephalomyelitis (M.E) also known as Chronic Fatigue Syndrome (C.F.S) is a chronic, fluctuating illness that causes severe and persistent fatigue affecting the nervous and immune system. It is said to affect an estimated 250,000 people in the UK, 12,000 in Wales and 17 million worldwide.

M.E is recognised by the World Health Organisation as a neurological illness since 1969. The National Institute for Health and Clinical Excellence (NICE) emphasise that this is a real illness with physical symptoms as disabling as multiple sclerosis, lupus, rheumatoid arthritis and other chronic conditions. It is thought more women than men are affected and is more commonly developed between the ages of 20 to 40 year olds but children are also affected which can cause long-term school absence.

People with M.E can vary enormously in their experience of the illness, some much more severe than others and also how long their symptoms last. The most important thing to remember is that despite the condition it’s still the same person underneath. They maybe more fatigued and less able to complete activities they could before but they have the same thoughts and feelings and they need your support!

It is not clear as to why some people make a moderate recovery and others remain quite severely affected, there are around 25% who are wheelchair or bed bound.

How exactly does M.E / Chronic Fatigue Syndrome start?

M.E / C.F.S is often reported as having started with a virus or other infection, commonly involving the chest or stomach. However, it can develop after an accident, operation, vaccination or even exposure to crop sprays  or other shocks to the system.  For some people it starts gradually, perhaps over months, for others it is a continuation of the prior cause. The causes of M.E / C.F.S are still unknown.

What distinguishes M.E / C.F.S from other chronic illnesses?

By far the most widely reported characteristics of the illness, which distinguishes it from other chronic conditions, is exhaustion and malaise following physical or mental activity, the full extent of which becomes apparent only 24 to 48 hours after activity. Recovery from this flare-up of symptoms may be prolonged-days, weeks or even months. Rapid fluctuation of symptoms is a second key indicator.

The following videos help to demonstrate exactly “What is M.E?”

What are the other main symptoms?

Abnormal muscle fatigue following activity. Muscle pain and muscle twitching. Sometimes with eyelid tic or twitch. Failures in attention span. short term memory and concentration. Other cognitive problems such as tendency to lose track of conversation in the middle of sentences, along with difficulty thinking of the correct word when speaking or writing and difficulty putting ideas into order. Constantly feeling unwell, with ‘flu-like’ symptoms (e.g. sore throat, enlarged glands, joint pains) and problems with temperature control and night sweats.

Other symptoms may include:

Sleep disturbance, especially waking unrefreshed. The disturbance can include sleeping for long periods, perhaps 12 to 18 hours at a stretch, inability to get to sleep, sleeping during the day while staying awake at night, dreams (sometimes nightmares) particularly memorable by their vivid colour.

  • Pain in one or more joints with no signs of swelling, redness or joint deformity.
  • Feelings of unsteadiness, when walking or standing “walking on rubber”.
  • Sudden, unexplained mood swings.
  • Headaches of a new type, pattern or severity.
  • Sensations of tingling or numbness, loss of sense of touch.
  • Over-sensitivity to noise and/or light.
  • Alcohol intolerance, particularly in the early stages of the illness, and onset of food intolerances

Additional Information

Is there a diagnostic test for M.E / C.F.S?

No, the diagnosis has to be made from the typical pattern of symptoms, with the exclusion of other possible causes. Anyone suspected of having M.E / C.F.S should have a number of routine blood tests to identify other possible illnesses, and have more specialized investigations if the diagnosis remains in doubt.

What are the chances of recovery?

People with M.E tend to fall into one of three groups:

People who manage to return completely to normal health, but this may take considerable time. The percentage of people falling into this category is fairly small. The majority, tend to follow a fluctuating pattern with both good and bad periods of health.  Relapses or flare-ups are often triggered by infections, operations, temperature extremes or stressful events.

A significant minority remain severely affected and will require a great deal of practical and social support. Continued deterioration is unusual. When this occurs, a detailed medical assessment is advised to exclude other conditions.

How can recovery be helped?

It is important to remain positive about the prospect of recovery. The period of illness varies from person to person and improvements in health can occur, even in people who have been ill for a long time. More information about living with M.E.

Anecdotal reports suggest two things which improve prospects for recovery

Taking control early on in the illness (in particular not trying to ignore the symptoms in the hope they’ll go away). Youth-younger people seem to make a better recovery than adults.

Sudden improvement and sustained recovery

Fluctuation in symptoms may lull you into a false sense of security, so do not be tempted to do too much if you suddenly feel better for a short while. Sustained recovery is preferable to a roller-coaster ride of inappropriate activity and relapse.

If recovery slows or stops

Experience suggests a large proportion of people make a degree of recovery but then reach a point where the rate slows dramatically, becomes sporadic or even stops. We do not know the reason for this. Some doctors suggest this happens because the person develops an incorrect understanding of the illness and so rehabilitation therapy is offered.

Relapses

Relapses are a feature of M.E / C.F.S and may occur through a  variety of circumstances: exposure to other illness, sustained physical or mental activity unsuited to a person’s capacity at the time, incompatible treatments and therapies, emotional stress, vaccinations, anaesthetics etc. So it may make sense to limit exposure to these situations, except where the consequences of doing so could make matters worse.