What is ME?

ME is a fluctuating neurological condition which affects the brain at a physical, mental and emotional level. Research has found evidence of gene dysfunction affecting many of the body’s systems including the immune system, neuroendocrine system, autonomic nervous system and muscles. It can have a long term and disabling affect on people of all ages, sexes and ethnic groups. There are an estimated 12,000 people in Wales with the condition – 10% are children under the age of 16.

What is it called?

There is no agreement over what to call the condition and a number of names are in use:

ME – Myalgic Encephalomyelitis [the original name, still favoured by many] or Myalgic Encephalopathy [considered by some to be more accurate]

CFS – Chronic Fatigue Syndrome [used by the medical profession as an alternative to ME or as an umbrella term for illnesses with fatigue as a major symptom]

CFIDS – Chronic Fatigue Immune Dysfunction Syndrome [used in the US]

ME/CFS or CFS/ME [used as a compromise or when consensus is needed]

ME and CFS are not the same as chronic fatigue (which is a symptom that can be found in many different conditions) or TATT (Tired All The Time).

What causes it?

There is currently no single identifiable cause although for many the trigger is a virus, sometimes leading to an initial diagnosis of Post Viral Fatigue Syndrome (PVFS). Other triggers include certain vaccinations, toxins, pesticide exposure and major stressful life events. These can appear to ‘cause’ the illness, but are more likely to be just one factor which contributes to someone becoming unwell. Research is gradually discovering what is going wrong in the body but it is still unclear what the underlying cause is.

What are the symptoms?

Initially adult patients tend to complain of severe ‘flu-like’ symptoms, which are worse and longer lasting than a bout of flu, with sore throats and swollen glands, muscle and joint pain, mental fuzziness, sleep disturbance, exhaustion and many other symptoms. Children and young people have similar symptoms but can have more headaches, disrupted sleep patterns, and stomach problems. Over time the pattern of the illness can change.

Many other medical conditions have similar symptoms, which can make diagnosis a challenge, but the distinctive characteristic of ME is that symptoms become worse after physical and mental exertion, although the reaction may be delayed by a day or more (post-exertional response) and a return to previous level of health can be unpredictable. Symptoms fluctuate and there can be periods of remission and relapse leaving patients and families alike, confused and frustrated.

How long does it last?

Progress is difficult to predict. A small percentage of people make a complete recovery over time. Some reach 70-80% of previous level of health and are able to live a ‘normal’ life with adjustments, although this may take some years. The majority follow a fluctuating pattern with good and bad periods of health. Although not unknown, continued deterioration is rare. About 25% remain severely disabled and in need of continued care and support. Young people are more likely to recover than adults but some children do remain ill into adulthood.

Is there a cure?

There is currently no cure or treatment and what helps one person may not help another. This could be because there are a number of different conditions with similar symptoms (researchers talk about ‘sub-groups’ of CFS) which might require different treatment. What seems to help most in the early ‘acute’ stage of the illness is to take enough rest and not rush back to work or school too soon. Most people learn to ‘manage’ their condition by a combination of approaches which may include pacing, medication, lifestyle changes, diet and complementary therapies.

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