This was taken from ayme.org.uk
What Is ME?
ME is a recognised relapsing and remitting medical condition with many complex fluctuating symptoms. Its existence is confirmed in the January 2002 report by the Chief Medical Officer of England and Wales (downloadable from the Department of Health web site at www.doh.gov.uk/cmo – for Scotland see the Scottish CMO report published February 2002 http://www.show.scot.nhs.uk/). The report states that ME is: “… a genuine illness and imposes a substantial burden on the health of the UK population” (Chapter 1 page 1) and “…is a quite common, very heterogeneous condition of adults and children that lacks specific disease markers but is clinically recognisable.” (Annex 6 page 1).
ME stands for Myalgic Encephalopathy (My-al-jik En-kefa-lop-athy)
The term Myalgic Encephalopathy indicates the pain in the muscles, neurological problems and general suffering that accompany this illness:
Myalgic: Greek origin meaning muscle
Encephalo: Greek origin meaning brain
Pathy: meaning suffering or sickness
There is no known cause of ME as yet, although in young people it most commonly follows persistent viral infection. It is often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).
Sometimes ME is still referred to by an older version of the name: Myalgic Encephalomyelitis. However, this is technically incorrect because the term ‘myelitis’ means inflammation of the brain and there is no inflammation found in the brain of ME patients. This was discussed by the doctors involved in the Chief Medical Officer’s steering group and they agreed that ‘pathy’ was a more correct definition.
For further information, click on the links below:
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What is ME like?
Young members of AYME explain what it's like to have M.E
The main symptom of M.E is the utter exhaustion, often to the point of collapse.
"I can't walk straight and my balance is dreadful." "It's like a giant hoover has come down out of the sky and ****ed out all my energy."
"My energy is used up so quickly, even on simple tasks like sitting up, or getting dressed."
"On bad days it can be hard work just lifting a spoon to your mouth."
"Words come out all wrong and you forget what you're saying in the middle of a sentence."
"I can't concentrate on any kind of reading, writing, or watching television for more than ten minutes."
"My legs ache continuously; the muscles twitch and jump. I start off walking quite well but soon my legs grow heavier until they can't straighten under my weight." "All my senses are hypersensitive. And noise is painful and bright lights hurt my eyes."
"I sleep all day and am awake all night. I try to sleep, but the inside of my head just goes round and round."
"Even on the hottest day I feel cold, especially my hands and feet. They tingle and sometimes I can't feel my fingers."
What do children and young people with M.E have to do to manage their illness?
"The patient has to find his or her limitations. They try a very small activity for 10 or 15 minutes, then rest. In severe cases of M.E, 'activity' can mean simply sitting up in bed or having a short conversation." "I tried to push myself and do a lot more than I was really capable of. It was a natural reaction for me, but now I realise that it wasn't brave. If you do that, you end up feeling worse than when you started. I then learned to pace myself and tried to avoid the urge to complete a task in one sitting. I alternated small mental tasks with small physical ones because I soon learned that it was as important to rest my brain as it was my body." They have to balance out activity and rest.
