Mysterious fatigue illness that costs Britain £6bn a year !
Posted: Wed May 10, 2006 12:51 pm
Source:timesonline
By Joanna Bale
THREE quarters of ME sufferers have lost their jobs because of their illness, costing the nation £6.4 billion a year, according to new research.
About 55,000 people in Britain are so severely affected by myalgic encephalomyelitis, once dismissed by many doctors as psychological, that they are bed-bound or house-bound.
The survey found that, of the 240,000 sufferers in Britain, 77 per cent had lost their jobs as a result of the illness. Published as part of an awareness campaign by Action for ME, it provides the most detailed analysis of the illness ever carried out.
Today The Times publishes a new poem by Frieda Hughes, the daughter of Sylvia Plath and Ted Hughes, about her experience of the condition to mark ME Awareness Week this week. Ms Hughes, a painter, children’s story-writer and poet, suffered ME for more than three years. The poem begins by describing how she first became aware that something was wrong during a long car journey in Australia.
For months afterwards she was confined to lying on a mattress in her studio home in Wooroloo, Australia, sleeping most of the day and night. During her slow recovery she wrote poetry, later shaped into Wooroloo, her first collection.
Other sufferers include Lord Puttnam, Dame Kelly Holmes and Shirley Conran, the author.
Trish Taylor, chair of Action for ME, said: “ME robs people of their ability to work and destroys their close relationships. It leaves many sufferers in wheelchairs and some have to be tube-fed.â€Â
The survey found that more than one third of the public (35 per cent) has never heard of ME, which is also known as Chronic Fatigue Syndrome.
The illness particularly affects the nervous and immune systems. Many sufferers experience pain on a constant basis, and most believe that an infection was the cause.
One sufferer is Ebun Culwin, who has felt unwell since the age of 19 when she developed glandular fever, then pelvic inflammatory disease. She struggled until six years ago when, at the age of 47, she was found to have ME. “I just assumed that it was my fault, that I wasn’t getting enough exercise, fresh air or something,†she said. When she had her two daughters, in her mid 20s, the condition became worse and she blames it for the breakdown in her relationship with her partner. She said: “When my relationship collapsed, I was diagnosed with suspected meningitis, which I believe to have been the effects of ME.
“It has affected my cognitive abilities. I have a low concentration span, muddled thought processes and dyslexia.â€Â
Ms Culwin, who also suffers from asthma and arthritis, has been bed-bound for weeks at a time at her home in London.
She lives on a disability pension from her job as a social worker. The diagnosis of ME was first made by a cranio- sacral therapist and eventually confirmed by her GP.
Despite her illness, she is an accomplished artist and singer- songwriter. She said: “ME sufferers are very motivated people. Music and art are so much ingrained in me, it’s who I am.â€Â
How It Began
by FRIEDA HUGHES
There was first the small sound
Of a metal wire snapping
Like a violin string inside my head
On a long drive South in Australia,
Me, a passenger.
The sharp, plaintive note
Snagged my attention,
It was followed by a sense of foreboding
That something was wrong.
When we stopped I found
That during our journey my feet
Had become welded to the floor of the car.
I tried to lift my legs at the knees
But the joints where my arms
Were hooked onto my shoulders
Had lost their point. My man
Stared in disbelief
At my immobility,
With growing fury he
Manoeuvred my limbs from the vehicle
And made me stand.
If I had to die in order to lie down
Right there on the pavement
I would have keeled over,
Soulless, immediately.
Weeks later when
This flu refused to cure
The blood tests began,
Followed by a CAT scan
And psychiatric examination
To rule out depression.
They found me sane as anyone could be
Afflicted by M.E.
I could not read or concentrate,
Or walk more than a few
Dead-legged paces, or talk;
I found it hard with wooden tongue
To fix the words in place.
Inertia flooded my veins,
Set like concrete,
And immobilised my working brain,
It would be almost four years
Before I read a book again.
Now, a single question
About sugar, or not, in tea
Could render me senseless,
And sleep was not sleep
Of rest and waking, but a mud
Of the mind's making to wade through
So that strength and cognitive ability
Were all used up
By the time my eyes opened.
The actions of a day
Were suspended for as long as string,
Despite my fury, and all my efforts to resist,
My life as I had known it
Ended.
By Joanna Bale
THREE quarters of ME sufferers have lost their jobs because of their illness, costing the nation £6.4 billion a year, according to new research.
About 55,000 people in Britain are so severely affected by myalgic encephalomyelitis, once dismissed by many doctors as psychological, that they are bed-bound or house-bound.
The survey found that, of the 240,000 sufferers in Britain, 77 per cent had lost their jobs as a result of the illness. Published as part of an awareness campaign by Action for ME, it provides the most detailed analysis of the illness ever carried out.
Today The Times publishes a new poem by Frieda Hughes, the daughter of Sylvia Plath and Ted Hughes, about her experience of the condition to mark ME Awareness Week this week. Ms Hughes, a painter, children’s story-writer and poet, suffered ME for more than three years. The poem begins by describing how she first became aware that something was wrong during a long car journey in Australia.
For months afterwards she was confined to lying on a mattress in her studio home in Wooroloo, Australia, sleeping most of the day and night. During her slow recovery she wrote poetry, later shaped into Wooroloo, her first collection.
Other sufferers include Lord Puttnam, Dame Kelly Holmes and Shirley Conran, the author.
Trish Taylor, chair of Action for ME, said: “ME robs people of their ability to work and destroys their close relationships. It leaves many sufferers in wheelchairs and some have to be tube-fed.â€Â
The survey found that more than one third of the public (35 per cent) has never heard of ME, which is also known as Chronic Fatigue Syndrome.
The illness particularly affects the nervous and immune systems. Many sufferers experience pain on a constant basis, and most believe that an infection was the cause.
One sufferer is Ebun Culwin, who has felt unwell since the age of 19 when she developed glandular fever, then pelvic inflammatory disease. She struggled until six years ago when, at the age of 47, she was found to have ME. “I just assumed that it was my fault, that I wasn’t getting enough exercise, fresh air or something,†she said. When she had her two daughters, in her mid 20s, the condition became worse and she blames it for the breakdown in her relationship with her partner. She said: “When my relationship collapsed, I was diagnosed with suspected meningitis, which I believe to have been the effects of ME.
“It has affected my cognitive abilities. I have a low concentration span, muddled thought processes and dyslexia.â€Â
Ms Culwin, who also suffers from asthma and arthritis, has been bed-bound for weeks at a time at her home in London.
She lives on a disability pension from her job as a social worker. The diagnosis of ME was first made by a cranio- sacral therapist and eventually confirmed by her GP.
Despite her illness, she is an accomplished artist and singer- songwriter. She said: “ME sufferers are very motivated people. Music and art are so much ingrained in me, it’s who I am.â€Â
How It Began
by FRIEDA HUGHES
There was first the small sound
Of a metal wire snapping
Like a violin string inside my head
On a long drive South in Australia,
Me, a passenger.
The sharp, plaintive note
Snagged my attention,
It was followed by a sense of foreboding
That something was wrong.
When we stopped I found
That during our journey my feet
Had become welded to the floor of the car.
I tried to lift my legs at the knees
But the joints where my arms
Were hooked onto my shoulders
Had lost their point. My man
Stared in disbelief
At my immobility,
With growing fury he
Manoeuvred my limbs from the vehicle
And made me stand.
If I had to die in order to lie down
Right there on the pavement
I would have keeled over,
Soulless, immediately.
Weeks later when
This flu refused to cure
The blood tests began,
Followed by a CAT scan
And psychiatric examination
To rule out depression.
They found me sane as anyone could be
Afflicted by M.E.
I could not read or concentrate,
Or walk more than a few
Dead-legged paces, or talk;
I found it hard with wooden tongue
To fix the words in place.
Inertia flooded my veins,
Set like concrete,
And immobilised my working brain,
It would be almost four years
Before I read a book again.
Now, a single question
About sugar, or not, in tea
Could render me senseless,
And sleep was not sleep
Of rest and waking, but a mud
Of the mind's making to wade through
So that strength and cognitive ability
Were all used up
By the time my eyes opened.
The actions of a day
Were suspended for as long as string,
Despite my fury, and all my efforts to resist,
My life as I had known it
Ended.