Indigophoton
Senior Member
- Messages
- 127
- Location
- UK
(Long post)
I received a full copy of a BMJ article via email from an ME charity forum/list, so I assume it's OK to post. The article was published on 1st November. On the same day, AYME published a statement intended "to address some concerns and misperceptions" about their involvement with FITNET, which I have included below the BMJ article.
I have bolded a paragraph in each...
http://www.bmj.com/content/355/bmj.i5860.short
Online CBT is trialled for children with chronic fatigue syndrome
BMJ 2016; 355 doi: http://dx.doi.org/10.1136/bmj.i5860 (Published 01 November 2016) Cite this as: BMJ 2016;355:i5860
Nigel Hawkes
A UK trial launched on 1 November will seek to establish whether cognitive behavioural therapy (CBT) delivered online is effective in treating chronic fatigue syndrome (CFS) in children.
Esther Crawley, professor of child health at the University of Bristol, hopes to recruit 734 children and adolescents over the next three years to be randomly assigned either to a programme of online CBT already shown to be effective in the Netherlands or to advice on managing activities and sleep.
The consultations will be conducted using Skype and will involve children and their parents. The children will answer questions and keep diaries and will have regular consultations with therapists, usually weekly. A full course will comprise 19 consultations, and Crawley hopes that, after allowing for loss to follow-up, she will have 330 children in each group to compare. The first 12 months of the study, funded by the National Institute for Health Research, will be designed to establish whether this many patients can be recruited.
CBT is a recognised treatment for CFS, recommended by the National Institute for Health and Care Excellence (NICE) in 2007 and confirmed to show benefit in adults by the PACE trial.1 Crawley expects outcomes in children to be better than in adults, partly because treatments generally seem to work better in children. The Dutch results showed that, after six months of the FITNET programme, results were much better than with normal care: 75% of children were back in full school attendance, compared with 16% in normal care, and 78% of the FITNET group said that they had completely recovered or now felt much better, compared with 27%.
The whole UK trial will cost £994 430 (€1.1m; $1.2m) and should be complete by 2022. Crawley believes that the online element is important because so many children who suffer from CFS (also known as
CFS/ME) live in places where specialist care is unobtainable.
“I don’t think patients should travel a long distance to be seen, as this is so difficult for them, so they will be assessed locally and then treated online,” she told a briefing organised by the Science Media Centre at the Academy of Medical Sciences in London. “This might be really good for patients, or it might make it harder for them. My view is that, even if we show a lower rate of recovery, this is still going to be very important for patients because, at the moment, they cannot access anything.”
CFS is very common in children, said Crawley, with an incidence of 1-2%. A screening study she conducted showed that 1% of children were missing school one or more days a week as a result of CFS and that 30% of these children experienced depression and anxiety. “It’s costly to children, to mothers, and to the healthcare system,” she said. “NICE guidance recommending either CBT or graded exercise therapy was issued
10 years ago, but most children can’t get it. The trial will aim to establish if it is possible to deliver CBT in this way and whether it is cost effective.”
Research into CFS is difficult, partly because of a vocal minority who disparage any psychological treatment for the condition, insisting on a biological cause that would have been found long ago if research had been directed properly. Crawley has long experience of such activists and is not discouraged, emphasising that her patients and their parents have no such beliefs and are open to any treatment that offers hope of improvement.
“My worry is that, if those campaigning against research succeed, the people who will suffer will be the children and teenagers with CFS/ME,” she said.
Dutch scientists will be part of the team, with a steering group chaired by Paul McCrone, of the Institute of Psychiatry at King’s College, London.
Another member of the steering group, Mary-Jane Willows, of the Association for Young People with ME, said, “We desperately need treatment for young people with ME that they can get wherever they are in the UK—children tell us they just want to get better.”
References
1 Torjesen I. Tackling fears about exercise is important for ME treatment, analysis indicates. BMJ2015;350:h227.
AYME Letter:
Dear AYME supporters,
Following today's announcement of our involvement with the FITNET-NHS trial, we'd like to address some concerns and misconceptions that have arisen.
Firstly we'd like to address people's concerns regarding CBT.
AYME and Professor Crawley are very clear on our position, we do think that ME/CFS is a biological condition and much research needs to be done to determine the exact cause and treatment. We do not support the hypothesis that ME/CFS is a psychological disorder. However, a complete understanding of ME/CFS may be decades away and we cannot allow nothing to be done for children and young people with ME/CFS in the meantime. There is promising research happening at the moment, but even if the exact cause is determined soon, it may take a long time for a treatment to be available.
CBT actually has a beneficial biological effect, it's a holistic supportive treatment which can aid recovery and is used for a variety of physiological illnesses with good results. Things like improving sleep habits and pacing daily activities can actually support your body to aid it in recovery from a variety of illnesses. CBT treatment is not a on-size-fits-all solution, each member of the trial will be assessed and advised on their specific condition to ensure that the CBT provided will be as effective as possible.
What we can offer to children and young people with ME/CFS is help to try and improve their quality of life. For some this is enough, they see a great result and consider themselves recovered. For others it can simply help them get to school a little more often or enjoy more time with friends and family. What we do know is that when used properly, CBT can help people manage their symptoms - and for any child or young person who would like to try to improve their quality of life FITNET is a great opportunity.
Secondly we would like to address the trial in the Netherlands.
The media have used the word 'cured' frequently when describing the 63% of patients who felt the trial was a success for them. We feel this was the wrong language to use and we appreciate that long-term effects have not been taken into account. We would like to stress that if 63% of all children in the UK saw an improvement to their symptoms, that would be a fantastic achievement.
Thirdly we'd like to address the FITNET trial itself.
This trial is completely voluntary, it is open to people between the ages of 11 and 17 and we'd like to encourage anyone who's interested to call our helpline on 0330 2211223 to discuss it further. The activities planned in FITNET are not harmful in any way, the people who join the trial will be provided with consultations, advice and support to help them improve their quality of life. As ME/CFS is a severely debilitating condition, taking a half a day or even a few hours to travel to the professionals is sometimes out of the question, so we welcome the online nature of this trial. We'd also like to point out that this trial hasn't come out-of-the-blue, young people have been involved in the creation of this trial, they have lent their support and feedback and have helped shape FITNET so that others can achieve the maximum benefit.
Finally we'd like to address the negative comments from our community.
AYME support scientific research, we're passionate about helping children and young people cope with ME/CFS. We are a very small charity with a wonderful community of supporters, may of whom currently or have previously had a diagnosis of ME/CFS. Our supporters are amazing people and we appreciate all of your comments, suggestions and feedback.
At the end of the day we all want the same thing, a world where ME/CFS no longer exists, and what AYME want more than anything is to be able to help make that vision a reality faster. We're here to support and we do everything within our capabilities to help young people and children with ME/CFS. At this time, we'd really appreciate the community coming together to support those who would like to be involved in the trial. These 700 children and young people are being courageous enough to try something new, to take the opportunity to try and improve their quality of life and to hopefully be successful in seeing improvements. The least we can do as a community is support them and offer our encouragement, our well wishes and thanks for making this effort - which may well go on to improve our supportive treatment methods meaning that ME/CFS is less of a struggle to future generations. AYME would like to thank the whole community at this time and we look forward to a day when ME/CFS can be treated or cured.
Helpful links:
Listen in at 2:14:48 to hear the BBC Radio4 today interview about the #FITNET #cfs/me trial http://www.bbc.co.uk/programmes/b080t63t
Watch at 01:08:20 to see our Chief Executive, Mary Jane Willows, on the Victoria Derbyshire show on BBC2 http://www.bbc.co.uk/iplayer/episode/b0817fqg/victoria-derbyshire-01112016
Errmm...presumably AYME and Crawley don't think patients have access to the BMJ. Could the spin be any more transparent?
I received a full copy of a BMJ article via email from an ME charity forum/list, so I assume it's OK to post. The article was published on 1st November. On the same day, AYME published a statement intended "to address some concerns and misperceptions" about their involvement with FITNET, which I have included below the BMJ article.
I have bolded a paragraph in each...
http://www.bmj.com/content/355/bmj.i5860.short
Online CBT is trialled for children with chronic fatigue syndrome
BMJ 2016; 355 doi: http://dx.doi.org/10.1136/bmj.i5860 (Published 01 November 2016) Cite this as: BMJ 2016;355:i5860
Nigel Hawkes
A UK trial launched on 1 November will seek to establish whether cognitive behavioural therapy (CBT) delivered online is effective in treating chronic fatigue syndrome (CFS) in children.
Esther Crawley, professor of child health at the University of Bristol, hopes to recruit 734 children and adolescents over the next three years to be randomly assigned either to a programme of online CBT already shown to be effective in the Netherlands or to advice on managing activities and sleep.
The consultations will be conducted using Skype and will involve children and their parents. The children will answer questions and keep diaries and will have regular consultations with therapists, usually weekly. A full course will comprise 19 consultations, and Crawley hopes that, after allowing for loss to follow-up, she will have 330 children in each group to compare. The first 12 months of the study, funded by the National Institute for Health Research, will be designed to establish whether this many patients can be recruited.
CBT is a recognised treatment for CFS, recommended by the National Institute for Health and Care Excellence (NICE) in 2007 and confirmed to show benefit in adults by the PACE trial.1 Crawley expects outcomes in children to be better than in adults, partly because treatments generally seem to work better in children. The Dutch results showed that, after six months of the FITNET programme, results were much better than with normal care: 75% of children were back in full school attendance, compared with 16% in normal care, and 78% of the FITNET group said that they had completely recovered or now felt much better, compared with 27%.
The whole UK trial will cost £994 430 (€1.1m; $1.2m) and should be complete by 2022. Crawley believes that the online element is important because so many children who suffer from CFS (also known as
CFS/ME) live in places where specialist care is unobtainable.
“I don’t think patients should travel a long distance to be seen, as this is so difficult for them, so they will be assessed locally and then treated online,” she told a briefing organised by the Science Media Centre at the Academy of Medical Sciences in London. “This might be really good for patients, or it might make it harder for them. My view is that, even if we show a lower rate of recovery, this is still going to be very important for patients because, at the moment, they cannot access anything.”
CFS is very common in children, said Crawley, with an incidence of 1-2%. A screening study she conducted showed that 1% of children were missing school one or more days a week as a result of CFS and that 30% of these children experienced depression and anxiety. “It’s costly to children, to mothers, and to the healthcare system,” she said. “NICE guidance recommending either CBT or graded exercise therapy was issued
10 years ago, but most children can’t get it. The trial will aim to establish if it is possible to deliver CBT in this way and whether it is cost effective.”
Research into CFS is difficult, partly because of a vocal minority who disparage any psychological treatment for the condition, insisting on a biological cause that would have been found long ago if research had been directed properly. Crawley has long experience of such activists and is not discouraged, emphasising that her patients and their parents have no such beliefs and are open to any treatment that offers hope of improvement.
“My worry is that, if those campaigning against research succeed, the people who will suffer will be the children and teenagers with CFS/ME,” she said.
Dutch scientists will be part of the team, with a steering group chaired by Paul McCrone, of the Institute of Psychiatry at King’s College, London.
Another member of the steering group, Mary-Jane Willows, of the Association for Young People with ME, said, “We desperately need treatment for young people with ME that they can get wherever they are in the UK—children tell us they just want to get better.”
References
1 Torjesen I. Tackling fears about exercise is important for ME treatment, analysis indicates. BMJ2015;350:h227.
AYME Letter:
Dear AYME supporters,
Following today's announcement of our involvement with the FITNET-NHS trial, we'd like to address some concerns and misconceptions that have arisen.
Firstly we'd like to address people's concerns regarding CBT.
AYME and Professor Crawley are very clear on our position, we do think that ME/CFS is a biological condition and much research needs to be done to determine the exact cause and treatment. We do not support the hypothesis that ME/CFS is a psychological disorder. However, a complete understanding of ME/CFS may be decades away and we cannot allow nothing to be done for children and young people with ME/CFS in the meantime. There is promising research happening at the moment, but even if the exact cause is determined soon, it may take a long time for a treatment to be available.
CBT actually has a beneficial biological effect, it's a holistic supportive treatment which can aid recovery and is used for a variety of physiological illnesses with good results. Things like improving sleep habits and pacing daily activities can actually support your body to aid it in recovery from a variety of illnesses. CBT treatment is not a on-size-fits-all solution, each member of the trial will be assessed and advised on their specific condition to ensure that the CBT provided will be as effective as possible.
What we can offer to children and young people with ME/CFS is help to try and improve their quality of life. For some this is enough, they see a great result and consider themselves recovered. For others it can simply help them get to school a little more often or enjoy more time with friends and family. What we do know is that when used properly, CBT can help people manage their symptoms - and for any child or young person who would like to try to improve their quality of life FITNET is a great opportunity.
Secondly we would like to address the trial in the Netherlands.
The media have used the word 'cured' frequently when describing the 63% of patients who felt the trial was a success for them. We feel this was the wrong language to use and we appreciate that long-term effects have not been taken into account. We would like to stress that if 63% of all children in the UK saw an improvement to their symptoms, that would be a fantastic achievement.
Thirdly we'd like to address the FITNET trial itself.
This trial is completely voluntary, it is open to people between the ages of 11 and 17 and we'd like to encourage anyone who's interested to call our helpline on 0330 2211223 to discuss it further. The activities planned in FITNET are not harmful in any way, the people who join the trial will be provided with consultations, advice and support to help them improve their quality of life. As ME/CFS is a severely debilitating condition, taking a half a day or even a few hours to travel to the professionals is sometimes out of the question, so we welcome the online nature of this trial. We'd also like to point out that this trial hasn't come out-of-the-blue, young people have been involved in the creation of this trial, they have lent their support and feedback and have helped shape FITNET so that others can achieve the maximum benefit.
Finally we'd like to address the negative comments from our community.
AYME support scientific research, we're passionate about helping children and young people cope with ME/CFS. We are a very small charity with a wonderful community of supporters, may of whom currently or have previously had a diagnosis of ME/CFS. Our supporters are amazing people and we appreciate all of your comments, suggestions and feedback.
At the end of the day we all want the same thing, a world where ME/CFS no longer exists, and what AYME want more than anything is to be able to help make that vision a reality faster. We're here to support and we do everything within our capabilities to help young people and children with ME/CFS. At this time, we'd really appreciate the community coming together to support those who would like to be involved in the trial. These 700 children and young people are being courageous enough to try something new, to take the opportunity to try and improve their quality of life and to hopefully be successful in seeing improvements. The least we can do as a community is support them and offer our encouragement, our well wishes and thanks for making this effort - which may well go on to improve our supportive treatment methods meaning that ME/CFS is less of a struggle to future generations. AYME would like to thank the whole community at this time and we look forward to a day when ME/CFS can be treated or cured.
Helpful links:
Listen in at 2:14:48 to hear the BBC Radio4 today interview about the #FITNET #cfs/me trial http://www.bbc.co.uk/programmes/b080t63t
Watch at 01:08:20 to see our Chief Executive, Mary Jane Willows, on the Victoria Derbyshire show on BBC2 http://www.bbc.co.uk/iplayer/episode/b0817fqg/victoria-derbyshire-01112016
Errmm...presumably AYME and Crawley don't think patients have access to the BMJ. Could the spin be any more transparent?