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Landmark chronic fatigue trial could cure two-thirds | Landmark chronic fatigue trial could cure two-thirds |
(about 3 hours later) | |
A therapy that successfully treats two-thirds of children with chronic fatigue syndrome is being trialled for NHS use. | A therapy that successfully treats two-thirds of children with chronic fatigue syndrome is being trialled for NHS use. |
The disease affects one in 50 children, leading to mental health problems and missing school. | The disease affects one in 50 children, leading to mental health problems and missing school. |
"If anyone has done a cross-country [run] or a marathon - that is how it feels all the time," said Jessica, 14. | "If anyone has done a cross-country [run] or a marathon - that is how it feels all the time," said Jessica, 14. |
The trial, on 734 children, will use intensive online therapy sessions to adjust sleeping habits and activity levels. | The trial, on 734 children, will use intensive online therapy sessions to adjust sleeping habits and activity levels. |
It also uses a form of behavioural therapy to help children with the disease adapt the way they live. | It also uses a form of behavioural therapy to help children with the disease adapt the way they live. |
Studies suggest one in 100 children misses at least a day of class a week because of the disease. | Studies suggest one in 100 children misses at least a day of class a week because of the disease. |
When Jessica - not her real name - was 10, she missed the equivalent of a whole term in one school year. | When Jessica - not her real name - was 10, she missed the equivalent of a whole term in one school year. |
She was diagnosed with chronic fatigue syndrome (CFS) - also known as myalgic encephalomyelitis (ME) - at the age of 11. | She was diagnosed with chronic fatigue syndrome (CFS) - also known as myalgic encephalomyelitis (ME) - at the age of 11. |
"I can't do the things my friends can do," she told the BBC News website. | "I can't do the things my friends can do," she told the BBC News website. |
"I've missed a lot of birthdays. | "I've missed a lot of birthdays. |
"When they have sleepovers, I have to sacrifice that. | "When they have sleepovers, I have to sacrifice that. |
"And I can only do mornings at school, so I miss a lot of lessons." | "And I can only do mornings at school, so I miss a lot of lessons." |
Prof Esther Crawley, a children's doctor and from the University of Bristol, said: "This illness is devastating, about 50% of teenagers are tired, but these children are different - they stop doing the stuff they want to do. | Prof Esther Crawley, a children's doctor and from the University of Bristol, said: "This illness is devastating, about 50% of teenagers are tired, but these children are different - they stop doing the stuff they want to do. |
"The first thing they drop is socialising and fun things, then they drop school, so this is very different to teenagers just being tired." | "The first thing they drop is socialising and fun things, then they drop school, so this is very different to teenagers just being tired." |
Jessica's mother said: "It has been hell, it has been depressing. | Jessica's mother said: "It has been hell, it has been depressing. |
"I have lost friends, she has lost friends. | "I have lost friends, she has lost friends. |
"She loves Florence and the Machine and her best friends went [to watch the band play live], it is isolating because her friends were doing what her mind wants to do but her body cannot." | "She loves Florence and the Machine and her best friends went [to watch the band play live], it is isolating because her friends were doing what her mind wants to do but her body cannot." |
Prof Crawley is leading the FITNET-NHS trial, to see if online consultations work and are cost-effective for the health service. | Prof Crawley is leading the FITNET-NHS trial, to see if online consultations work and are cost-effective for the health service. |
Trials of the scheme in the Netherlands showed 63% of the patients given therapy had no symptoms after six months, whereas just 8% recovered without it. | Trials of the scheme in the Netherlands showed 63% of the patients given therapy had no symptoms after six months, whereas just 8% recovered without it. |
The scheme offers behavioural therapy sessions to change the way children think of the disease and aims to reduce the time spent sleeping and sometimes cut activity levels. | The scheme offers behavioural therapy sessions to change the way children think of the disease and aims to reduce the time spent sleeping and sometimes cut activity levels. |
The approach regularly receives criticism from some activists who argue it treats chronic fatigue syndrome as a disease of the mind. | The approach regularly receives criticism from some activists who argue it treats chronic fatigue syndrome as a disease of the mind. |
Prof Crawley said: "A teenager might say, 'You are just trying to change my sleep,' but do you know how much biology you actually change? | Prof Crawley said: "A teenager might say, 'You are just trying to change my sleep,' but do you know how much biology you actually change? |
"Children who come to my clinical have low cortisol [stress hormone] levels in the morning, that is why they feel so terrible, by changing their sleep, we reverse that. | "Children who come to my clinical have low cortisol [stress hormone] levels in the morning, that is why they feel so terrible, by changing their sleep, we reverse that. |
"The stuff we are doing is not a pill, but it might as well be. | "The stuff we are doing is not a pill, but it might as well be. |
Lizzie Horgan, 26, from Hertfordshire, is just getting back to work after being hit with chronic fatigue syndrome in 2015. | Lizzie Horgan, 26, from Hertfordshire, is just getting back to work after being hit with chronic fatigue syndrome in 2015. |
"One evening I came home feeling really unwell and passed out, I had no control over my body. | |
"I was initially really reluctant to take up the offer of cognitive behavioural therapy, as I assumed it was for something psychological, but actually it really helped me understand what was happening to my body. | "I was initially really reluctant to take up the offer of cognitive behavioural therapy, as I assumed it was for something psychological, but actually it really helped me understand what was happening to my body. |
"So I think the trial is really cool and really exciting." | "So I think the trial is really cool and really exciting." |
The results of the study should be known in 2022. | The results of the study should be known in 2022. |
Mary-Jane Willows, from the Association of Young People with ME, told the BBC: "It is a scandal, what other condition would you leave a child with - undiagnosed and untreated? | Mary-Jane Willows, from the Association of Young People with ME, told the BBC: "It is a scandal, what other condition would you leave a child with - undiagnosed and untreated? |
"And the trouble is the longer they are left, the more ill they become. | "And the trouble is the longer they are left, the more ill they become. |
"This trial is hugely important, every day we are phoned by parents who are desperate to get treatment for their children." | "This trial is hugely important, every day we are phoned by parents who are desperate to get treatment for their children." |
Prof Stephen Holgate, from the Medical Research Council, said: "CFS/ME is an important disabling condition. | Prof Stephen Holgate, from the Medical Research Council, said: "CFS/ME is an important disabling condition. |
"It has been chronically underfunded for years, patients deserve high quality research like this." | "It has been chronically underfunded for years, patients deserve high quality research like this." |
Follow James on Twitter. | Follow James on Twitter. |