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M E - Myalgic Encephalomyelitis

Page updated - 09 June 2011

 . . but you don't look ill - Cheerful support for those with hidden illnesses


M.E. (Myalgic Encephalomyelitis) is a chronic, fluctuating illness. It is also known as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS). The illness affects many parts of the body, such as the nervous and immune systems. The most common symptoms are debilitating, severe fatigue or exhaustion, flu-like malaise, and problems with memory, concentration and muscle pain which can be excruciating.


Other Contacts

Visit Young ME Suffers Trust Website

Visit Colchester ME Self Help Website


Victoria's Story - Here are some notes, put together with Victoria's approval, and two poems about the illness.

These poems were written by Victoria Flute, an ME sufferer, & were chosen to be included in 'Young Hearts' - a book of 'Inspirational Poetry by children and young people with ME' – published by The Young ME Sufferers Trust. The poems give an insight into how this serious, chronic and often misunderstood illness affects people. Referring to Myalgic Encephalomyelitis as 'chronic fatigue' misleads many non sufferers into believing it is just extreme tiredness. However the symptoms are many and various – although not all sufferers experience them all.

Loss of memory, concentration, balance, co-ordination are caused by the affect the illness has on the brain & central nervous system. There can also be difficulty in sequencing words and numbers, speaking, thinking and absorbing information. Abnormalities of sleep rhythm, body temperature control, appetite, digestion, circulation and response to stress can occur. Sufferers may also develop sensitivity to light, sound, touch, certain foods, chemical substances etc.

There is no straight 'cure' for ME. The exhaustion that follows even minimal mental or physical exertion is one symptom that many sufferers find the most difficult to cope with. This can often be delayed by up to 72 hrs which makes it difficult to pinpoint the actual cause. Management of energy is one of the most helpful ways to live with ME, balancing rest with activity. 'Activity' doesn’t mean jogging or swimming - it can be something as small (to healthy people) as getting out of bed, cleaning teeth, getting dressed, eating a meal or it can be more - a 2 minute phone call to a friend, sitting in a chair, going out in a wheelchair. As the body recovers, the activity is gradually increased but stopping short of causing a relapse which can be a very difficult thing to judge. If treated inappropriately, e.g. by trying to force the pace of recovery, ME can become much worse .


Victoria's Poems

ON HOLD by Victoria Flute

The cure you would like to have is currently unavailable.

Please try again later.



The life you are trying to reach knows you are waiting.

Please hold.



Your hopes are important to us – we will be with you shortly.

Please hang on.


©  2004 The Young ME Sufferers Trust

MY WORLD’S STOPPED by Victoria Flute

In the rain I’ll go dancing

                So I can feel the drops once again.

Into the wind I shall fly

                Delighting in its blustering sigh.

Jumping in a drift of snow

                I’ll savour tingles in finger, toe.

Now, thought, I must lie in bed –

                And watch all of nature’s show instead.


I see larks singing way up high,

                Clouds floating across the big blue sky.

Sunsets, rainbows so vivid in hue,

                Each spring – new life so green, fresh and new.

Squirrels leaping through the trees,

                Autumn leaves twirling with each breeze.

My world’s stopped, but life goes on –

                And I’ve time to drink in each new dawn.


©  2004 The Young ME Sufferers Trust