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This article appeared in the Daily Mail Online yesterday:
ME: how one woman found a cure that works for her
by EMILY WILCOX, Daily Mail
"The Government's working party into the best ways to manage ME is due to publish its report any day. At the same time, York University has carried out a review of all the treatments for an illness that still mystifies many doctors. Here Emily Wilcox, the 23-year-old daughter of Esther Rantzen, who was diagnosed with ME at the age of 17, reveals what she believes worked for her.
When I was diagnosed with ME in 1995, it was a lottery if patients were seen by a doctor who believed it was an organic illness or by one who thought it was a psychiatric condition.
I was lucky to be treated by a doctor who believed glandular fever was the trigger for my lethargy, pain and gradual loss of mobility. Other sufferers were not so lucky.
Now, the medical establishment is finally coming to grips with the treatment of ME (myalgic encephalomyelitis or chronic fatigue syndrome), an illness that robs sufferers of years of active life.
But more ground rules must be established or patients will be at the mercy of ignorant doctors or those who charge a fortune for alternative remedies with no proven benefit.
With an estimated 150,000 sufferers in the country, I hoped that by telling my story I could demonstrate that the illness was real. So in 1996, while I was still well enough, I agreed to do Press conferences, interviews and photo-shoots, arguing that ME is a very real, physical illness.
However, I did get sick of the role of being Esther Rantzen's daughter with ME. I knew enough was enough when my brother, Josh, started calling me a D-list celebrity cripple.
Mum carried on campaigning, but I closed the door on the ME world and concentrated on getting better.
But my strange tiredness grew until I was wheelchair bound and then, in 1998, hospitalised, unable to get out of bed, sit up or hold a book, living in a twilight world.
During my deterioration, I felt weaker and the pain increased. I couldn't understand why such dreadful symptoms were dismissed in other ME sufferers by doctors across the country.
Mum received about 6,000 letters from other parents, desperate to know who to turn to because their children were so ill.
We heard of one girl who was thrown into a swimming pool in the belief that if her life was threatened her energy would return.
There was a father who went to prison when he forcibly tried to stop his son being taken against his will into a psychiatric ward where he was put on a punitive regime to force him to do more. And when one family were told there was no conventional treatment, they took out a mortgage to pay for alternative remedies - but that didn't provide a cure, either.
On the other hand, at the first meeting with my consultant, Professor Leslie Findley, he said ME is a self-correcting illness. Only 20 per cent of patients remain trapped in it for good. Of the remaining 80 per cent, 60 per cent make a complete return to health and the others have active lives, on condition they pace themselves.
For a long time, I didn't believe these statistics, but now I am forced to admit that Professor Findley's optimism was justified. I have come back to life. I am so improved that I can work, use public transport - and even stay out late sometimes.
The attitude to ME has gradually moved forward. When I was diagnosed, the illness was still being dismissed as 'yuppie flu'.
I experienced this when I first went to a consultant complaining of tired-ness, pain in my neck and limbs, and that light hurt my eyes.
The doctor told me to 'Pull your socks up and get back to school'. I did - and collapsed again two months later.
The York University report concludes that the only treatments proven to show a positive effect on ME are cognitive behaviour therapy (CBT) and graded exercise. I have tried both and they contributed to my recovery. But patients must be careful because the treatments can make them worse.
Cognitive behaviour therapy, a structured form of positive thinking taught by a trained therapist, is mistrusted by some ME sufferers. But as well as the physical symptoms of ME, there are other issues such as sleep loss, anxiety and fear. CBT tackles these and so can remove some of the barriers to recovery.
After a couple of years living with ME, you are likely to feel gloomy. This happened to me and makes me sure that depression is a symptom, not a cause, of the illness.
Graded exercise must be tailored to the individual patient's health. It can mean sitting up in bed, walking across a room more often during the day and building up your walking. This is a practice that has been used by my consultant for years at the National ME Centre in Essex.
When I was bedbound, graded exercise at first meant being lifted from my bed to sit in a chair for 15 minutes a day. Over the next year, I built up my strength until I could walk around the house unaided.
Sometimes, they reach this stage precisely because they have exercised inappropriately, perhaps doing aerobics to try to revive their energy when they needed to rest.
In my case, when I first noticed my sluggishness, I sweated it out in the multi-gym but made myself only more achy and tired. In fact, gentle exercise started to stimulate my energy when I alternated it with half-hour rests throughout the day.
There has been a change in attitude to ME. In the past, if I called a taxi and explained the reason for the wheelchair, the cabbie might guffaw: 'What, yuppie flu?'
Now, they are more likely to cluck sympathetically and talk about their sister-in-law, uncle or neighbour who also has ME.
But there are still horror stories. Some young children with ME are wrongly thought to be victims of abuse by their parents and end up on the at-risk register. Single parents are particularly vulnerable to being blamed unfairly for their children's illness.
The modern medical attitude is to treat the physical and mental symptoms of ME without knowing the cause. Graded exercise rebuilds physical strength while CBT tackles the emotional problems.
Some doctors say that CBT is not a magic pill that can cure you, and even if there was an instant cure, it would be a long road to recovery because chronic illness causes chronic handicap. They claim patients need time to regain confidence. I disagree.
If, five years ago, someone had given me a magic pill that cured me totally, I would have put on my knee-length boots and joined my friends to dance the night away - leaving my anxiety and depression to languish on the sofa without me.
As it is, my body has healed itself without much medical intervention. If only the doctors knew how.
Contact the Association Of Young People With ME, tel: 01908 373 300; www.ayme. org.uk."
It seems that the article is closed to comments.
It also seems to be a recurring item, as there was a previous article here:
http://www.dailymail.co.uk/health/article-1356316/At-I-discovered-secret-Emilys-14-lost-years-Esther-Rantzen.html
ME: how one woman found a cure that works for her
by EMILY WILCOX, Daily Mail
"The Government's working party into the best ways to manage ME is due to publish its report any day. At the same time, York University has carried out a review of all the treatments for an illness that still mystifies many doctors. Here Emily Wilcox, the 23-year-old daughter of Esther Rantzen, who was diagnosed with ME at the age of 17, reveals what she believes worked for her.
When I was diagnosed with ME in 1995, it was a lottery if patients were seen by a doctor who believed it was an organic illness or by one who thought it was a psychiatric condition.
I was lucky to be treated by a doctor who believed glandular fever was the trigger for my lethargy, pain and gradual loss of mobility. Other sufferers were not so lucky.
Now, the medical establishment is finally coming to grips with the treatment of ME (myalgic encephalomyelitis or chronic fatigue syndrome), an illness that robs sufferers of years of active life.
But more ground rules must be established or patients will be at the mercy of ignorant doctors or those who charge a fortune for alternative remedies with no proven benefit.
With an estimated 150,000 sufferers in the country, I hoped that by telling my story I could demonstrate that the illness was real. So in 1996, while I was still well enough, I agreed to do Press conferences, interviews and photo-shoots, arguing that ME is a very real, physical illness.
However, I did get sick of the role of being Esther Rantzen's daughter with ME. I knew enough was enough when my brother, Josh, started calling me a D-list celebrity cripple.
Mum carried on campaigning, but I closed the door on the ME world and concentrated on getting better.
But my strange tiredness grew until I was wheelchair bound and then, in 1998, hospitalised, unable to get out of bed, sit up or hold a book, living in a twilight world.
During my deterioration, I felt weaker and the pain increased. I couldn't understand why such dreadful symptoms were dismissed in other ME sufferers by doctors across the country.
Mum received about 6,000 letters from other parents, desperate to know who to turn to because their children were so ill.
We heard of one girl who was thrown into a swimming pool in the belief that if her life was threatened her energy would return.
There was a father who went to prison when he forcibly tried to stop his son being taken against his will into a psychiatric ward where he was put on a punitive regime to force him to do more. And when one family were told there was no conventional treatment, they took out a mortgage to pay for alternative remedies - but that didn't provide a cure, either.
On the other hand, at the first meeting with my consultant, Professor Leslie Findley, he said ME is a self-correcting illness. Only 20 per cent of patients remain trapped in it for good. Of the remaining 80 per cent, 60 per cent make a complete return to health and the others have active lives, on condition they pace themselves.
For a long time, I didn't believe these statistics, but now I am forced to admit that Professor Findley's optimism was justified. I have come back to life. I am so improved that I can work, use public transport - and even stay out late sometimes.
The attitude to ME has gradually moved forward. When I was diagnosed, the illness was still being dismissed as 'yuppie flu'.
I experienced this when I first went to a consultant complaining of tired-ness, pain in my neck and limbs, and that light hurt my eyes.
The doctor told me to 'Pull your socks up and get back to school'. I did - and collapsed again two months later.
The York University report concludes that the only treatments proven to show a positive effect on ME are cognitive behaviour therapy (CBT) and graded exercise. I have tried both and they contributed to my recovery. But patients must be careful because the treatments can make them worse.
Cognitive behaviour therapy, a structured form of positive thinking taught by a trained therapist, is mistrusted by some ME sufferers. But as well as the physical symptoms of ME, there are other issues such as sleep loss, anxiety and fear. CBT tackles these and so can remove some of the barriers to recovery.
After a couple of years living with ME, you are likely to feel gloomy. This happened to me and makes me sure that depression is a symptom, not a cause, of the illness.
Graded exercise must be tailored to the individual patient's health. It can mean sitting up in bed, walking across a room more often during the day and building up your walking. This is a practice that has been used by my consultant for years at the National ME Centre in Essex.
When I was bedbound, graded exercise at first meant being lifted from my bed to sit in a chair for 15 minutes a day. Over the next year, I built up my strength until I could walk around the house unaided.
Sometimes, they reach this stage precisely because they have exercised inappropriately, perhaps doing aerobics to try to revive their energy when they needed to rest.
In my case, when I first noticed my sluggishness, I sweated it out in the multi-gym but made myself only more achy and tired. In fact, gentle exercise started to stimulate my energy when I alternated it with half-hour rests throughout the day.
There has been a change in attitude to ME. In the past, if I called a taxi and explained the reason for the wheelchair, the cabbie might guffaw: 'What, yuppie flu?'
Now, they are more likely to cluck sympathetically and talk about their sister-in-law, uncle or neighbour who also has ME.
But there are still horror stories. Some young children with ME are wrongly thought to be victims of abuse by their parents and end up on the at-risk register. Single parents are particularly vulnerable to being blamed unfairly for their children's illness.
The modern medical attitude is to treat the physical and mental symptoms of ME without knowing the cause. Graded exercise rebuilds physical strength while CBT tackles the emotional problems.
Some doctors say that CBT is not a magic pill that can cure you, and even if there was an instant cure, it would be a long road to recovery because chronic illness causes chronic handicap. They claim patients need time to regain confidence. I disagree.
If, five years ago, someone had given me a magic pill that cured me totally, I would have put on my knee-length boots and joined my friends to dance the night away - leaving my anxiety and depression to languish on the sofa without me.
As it is, my body has healed itself without much medical intervention. If only the doctors knew how.
Contact the Association Of Young People With ME, tel: 01908 373 300; www.ayme. org.uk."
It seems that the article is closed to comments.
It also seems to be a recurring item, as there was a previous article here:
http://www.dailymail.co.uk/health/article-1356316/At-I-discovered-secret-Emilys-14-lost-years-Esther-Rantzen.html