. What is a patient with CFS supposed to see themself as? Are the 1/3 who even EC can't cure to be required to enter into a state of denial? What if they refuse?It's not like giving up smoking FFS.
Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)
- Thread starter Esther12
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. What is a patient with CFS supposed to see themself as? Are the 1/3 who even EC can't cure to be required to enter into a state of denial? What if they refuse?It's not like giving up smoking FFS.
Molly98
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So if it is aimed at changing fatigue-related cognitions, why is it recruiting only young people with ME, why is it not also trialling its "Therapy" on children with other diseases which fatigue is a symptom such as children with heart conditions, liver or kidney disease or cancer.
Surely it should be just as successful in any disease where fatigue is an issue to change fatigue-related cognitions and gradually increase activities. Why are ME patients continually singled out for this. Its not just the potential harm of the therapy its the harm the whole media bias and reporting has on every one of us and other peoples perceptions of us and this illness.
Statement from AYME showing on their website- sorry if already posted.
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 M.E./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 M.E./CFS is a psychological disorder. However, a complete understanding of M.E./CFS may be decades away - and we cannot allow nothing to be done for children and young people with M.E./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 one-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 M.E./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 M.E./CFS. We are a very small charity with a wonderful community of supporters, may of whom currently or have previously had a diagnosis of M.E./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 M.E./CFS no longer exists. And what AYME wants 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 M.E./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
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 M.E./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 M.E./CFS is a psychological disorder. However, a complete understanding of M.E./CFS may be decades away - and we cannot allow nothing to be done for children and young people with M.E./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 one-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 M.E./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 M.E./CFS. We are a very small charity with a wonderful community of supporters, may of whom currently or have previously had a diagnosis of M.E./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 M.E./CFS no longer exists. And what AYME wants 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 M.E./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
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Anybody notice that in the Dutch FitNet study (Dr. Nijhof et al) over half the “Usual Care” Therapy group were receiving GET or CBT, and the 'recovery' rate for this group was 8%. If we're expected to accept these trial results then surely that also means accepting that it's clear evidence CBT and GET are not actually effective treatments?
Do you have a direct link, I can't find it ?
Countrygirl
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http://solvecfs.org/recovery-by-internet-cbt-a-closer-look/
This made me chuckle.
Prof Peter White was rather critical of the FITNET results and commented that the definition was not sufficiently stringent, and highlighted the fact that some participants already effectively would have been classed as recovered on entry to the trial.
This made me chuckle.
Prof Peter White was rather critical of the FITNET results and commented that the definition was not sufficiently stringent, and highlighted the fact that some participants already effectively would have been classed as recovered on entry to the trial.
Ysabelle-S
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This statement from AYME pains me.
Among other things it states
“What we can offer to children and young people with ME/CFS is help to try and improve their quality of life [with CBT]. For some this is enough - they see a great result and consider themselves recovered. “
But later it says
“...we look forward to a day when ME/CFS can be treated or cured.”
So - CBT isn’t a treatment and recovery is not the same as cure....
The following section is quite irritating.
“...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...."
Every patient I know is courageous and tries all sorts of new (for them) things to try to gain some improved function and quality of life. Does AYME’s statement mean that those taking part in FITNET-NHS are more courageous than all other patients?
Among other things it states
“What we can offer to children and young people with ME/CFS is help to try and improve their quality of life [with CBT]. For some this is enough - they see a great result and consider themselves recovered. “
But later it says
“...we look forward to a day when ME/CFS can be treated or cured.”
So - CBT isn’t a treatment and recovery is not the same as cure....
The following section is quite irritating.
“...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...."
Every patient I know is courageous and tries all sorts of new (for them) things to try to gain some improved function and quality of life. Does AYME’s statement mean that those taking part in FITNET-NHS are more courageous than all other patients?
Thank you, it worked, got it now.
Ysabelle-S
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This is the pleading stage. They have reached pleading. Or bargaining if you like. We've had denial, anger, and we're still getting some of those still. God knows what they're going to be like when they reach depression.
Countrygirl
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If severe, they are diagnosed with PRS, and legal action, in some cases taken, and parents deprived of the rights to their child.
BurnA
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Feels like journalists should be legally obliged to declare any conflict of interest.
Countrygirl
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It is interesting to note the types of standard medical care that were used in the FITNET trial.
Of the 67 who formed the comparison group, 38 were receiving two or more therapies.
About half were undertaking GET and half face-to-face CBT,
So the improvement scores of the internet group, who were home resting were compared with the improvement rate of those attempting GET or/and travelling to the clinic for CBT. Not surprisingly, perhaps, those who were home, did better that those on an exercise regime. Even PACE didn't do that.
“Usual Care” Therapy Number of subjects receiving therapy
Cognitive Behavioral Therapy (face-to-face) 44
Graded Exercise Therapy 33
Alternative Therapy (not described) 16
Individual or group rehab (no described) 15
No therapy 7
Of the 67 who formed the comparison group, 38 were receiving two or more therapies.
About half were undertaking GET and half face-to-face CBT,
So the improvement scores of the internet group, who were home resting were compared with the improvement rate of those attempting GET or/and travelling to the clinic for CBT. Not surprisingly, perhaps, those who were home, did better that those on an exercise regime. Even PACE didn't do that.
“Usual Care” Therapy Number of subjects receiving therapy
Cognitive Behavioral Therapy (face-to-face) 44
Graded Exercise Therapy 33
Alternative Therapy (not described) 16
Individual or group rehab (no described) 15
No therapy 7
It is absolutely unclear to me what they are saying: are they saying that people can recover from ME/CFS through just CBT? Are they saying people can't recover, but it can help them cope?
According to the dictionary, recovery means: a return to a normal state of health.
That sounds like a cure to me. And that is exactly what Sanne Nijhof, author of the FITNET study, says in an interview on a FITNET-related website: FITNET aims at complete recovery, not at 'learning how to cope with the illness'. Now that is a crystal clear statement. Care to comment on this, AYME?
(somewhat passable Google translation of the interview here)
Ysabelle-S
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"It's important that you enter the treatment with a positive mindset: I can fully recover from CFS by working with the tips and tools of FITNET."
Good grief, imagine trying that with cancer or MS. Utterly deplorable.
Good grief, imagine trying that with cancer or MS. Utterly deplorable.
Ysabelle-S
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"It's important that you enter the treatment with a positive mindset: I can fully recover from CFS by working with the tips and tools of FITNET."
Good grief, imagine trying that with cancer or MS. Utterly deplorable.
This is a racket. An utterly cynical and harmful racket.
And of course if you don't get better, presumably it's because you entered the treatment with a negative attitude, rather than the so-called treatment being an utter pile of Scheiße.
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I've just listened to the radio 4 segment from this morning and despair! Jane Colby of tymes trust was first and probably didn't know what Esther Crawley would say, plus she only had a couple minutes. The girl they quoted obviously had a good experience with Crawley 's clinic, not all do, and was lucky enough to be okay with the programme and indeed improve, although she still has to be careful, so not 100%. And of course we don't know if she improved from the treatment or if it was coincidence.
Then we get EC, who is very slick. But her figures just aren't right, from one in 50 children ger 'chronic fatigue' (I think this is from her own research last year based on parents filling out forms on how tired their kids were), to 60% recover with specialist treatment-- is she referring to the Dutch study (null results at long-term followup) or earlier studies from the US in the 1990s, that don't show that a program helped or not, as there are no control groups, only give recovery rates after varying lengths of time from centres that did follow up.
It is so unbalanced, nothing about the children who aren't helped. or the more seriously ill. Nothing about potential for harm if the child attempts too much, and with a rigid programme that is possible. I do hope that parents considering this do a lot of research before signing up rather than swallowing the promotional material for the study.
Then we get EC, who is very slick. But her figures just aren't right, from one in 50 children ger 'chronic fatigue' (I think this is from her own research last year based on parents filling out forms on how tired their kids were), to 60% recover with specialist treatment-- is she referring to the Dutch study (null results at long-term followup) or earlier studies from the US in the 1990s, that don't show that a program helped or not, as there are no control groups, only give recovery rates after varying lengths of time from centres that did follow up.
It is so unbalanced, nothing about the children who aren't helped. or the more seriously ill. Nothing about potential for harm if the child attempts too much, and with a rigid programme that is possible. I do hope that parents considering this do a lot of research before signing up rather than swallowing the promotional material for the study.
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FITNET psychologist: "We aim at full recovery, not at "learning to cope with it" ..Some find it hard to believe, because they have heard that before. Then you need to remove that doubt. It's important that you enter the treatment with a positive mindset: I can fully recover from CFS by working with the tips and tools of FITNET."
Those words are pure Lightning Process Spin ... paraphrased Phil Parker. Dangerous.
Parents who trust AYME will fall for it and could well allow their children to be pushed.
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FITNET psychologist: "We aim at full recovery, not at "learning to cope with it" ..Some find it hard to believe, because they have heard that before. Then you need to remove that doubt. It's important that you enter the treatment with a positive mindset: I can fully recover from CFS by working with the tips and tools of FITNET."
Those words are pure Lightning Process Spin ... paraphrased Phil Parker. Dangerous.
Parents who trust AYME will fall for it and could well allow their children to be pushed.
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