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FITNET: BMJ Article vs AYME Statement, both published 1 Nov 2016

Discussion in 'Latest ME/CFS Research' started by Indigophoton, Nov 4, 2016.

  1. Indigophoton

    Indigophoton Senior Member

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    (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?
     
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  2. worldbackwards

    worldbackwards A unique snowflake

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    I think we can be pretty sure we're getting a full and balanced picture here then
     
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  3. Sidereal

    Sidereal Senior Member

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    The last refuge of the psychobabbler?
     
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  4. A.B.

    A.B. Senior Member

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    Or just a convenient lie. They seem to believe it's ethical to lie to patients if it increases acceptance of the therapy.
     
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  5. Valentijn

    Valentijn WE ARE KINA

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    They might be researchers, but they certainly aren't scientists, except perhaps by the standards of the Science Media Centre.

    Perhaps we need a new label specifically for the SMC's special brand of substandard scientists ... SMCientists? :cool:
     
  6. AndyPR

    AndyPR RIP PR :'(

    SMC scientists. For easier shorthand just take the first letter of each word or acronym and you get.... ;)
     
  7. barbc56

    barbc56 Senior Member

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    Poor kids. What an awful way to build up self esteem if told their illness is is related to what they think and do.

    If an effective type of therapy was provided, I can kind of see the rationale behind this.

    But therapy also involves reading the nuances of the patients like body language, etc. It needs to be face to face. I think a better answer would be to have therapists come to the children. Maybe nurses also trained in therapy, who have experience with patients with chronic illnesses. At the sane time a periodic check on the child's health and continue any therapy on an as needed basis.

    In a better world. of course.

    Several years ago I had short term therapy by a nurse who worked for years with patients who have chronic illnesses. She went back to school to get certified in therapy and developed her own program.

    It was very helpful, definitely not CBT. I was never told my illness was all in my head nor was it a cookie cutter approach but very individualized. Included were a lot of practical ideas she had picked up from patients, helping patients who have to cope with a chronic illness as well as issues with friends and family. Best of all was that it's okay to feel frustrated, to grieve, to be depressed at times as it's all a process and to expect a lot of ups and downs.

    Unfortunately, she retired and due to lack of money the program was discontinued.
     
    Last edited: Nov 4, 2016
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  8. Esther12

    Esther12 Senior Member

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    It seems like the majority will get better anyway, so for them it might be a big esteem boost! "I cured myself with the power of my mind... come on Cancer, you don't scare me!"

    Rather less good for those who don't improve.

    Hmm...
     
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  9. barbc56

    barbc56 Senior Member

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    If that weren't so sad, it would be funny.
     
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  10. Molly98

    Molly98 Senior Member

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    Well for Fuck sake just give perscribe us paracetamol then until proper treatment is found, Less potential harm than GET, probably more effective than CBT but at least recognises and validates that we are in physical pain instead of having imagined, unhelpful cognitions about our health and a fear of exercise.

    Decades away my arse, what planet are they from!
     
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  11. Countrygirl

    Countrygirl I'm with Cheesus

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    What I find curious is that face-to-face CBT that the FITNET Dutch standard medical treatment comparison cohort undertook, failed to work. Only 8% showed any improvement after six months. How come therefore that internet CBT could result in complete resolution of symptoms of 63% in the same time frame?

    It makes no sense.

    If CBT was remotely effective, more than 8% of the comparison group would have shown improvement during that time, especially given the fluctuating nature of the condition.

    There seems to be a serious disconnect here.
     
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  12. Countrygirl

    Countrygirl I'm with Cheesus

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    I don't think so, as she says this....................

     
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  13. sarah darwins

    sarah darwins I told you I was ill

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    More epic irony from the biopsychosocial gang. They've been holding back research for years. I think what they mean to say was:

    ".. a complete understanding of ME/CFS may be decades away if you keep giving the research money to people like me to run junk trials assessed by questionnaire."
     
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  14. sarah darwins

    sarah darwins I told you I was ill

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    Bingo, Countrygirl. If it's a biological condition, the notion of a psychological treatment is self-evident nonsense.
     
  15. Countrygirl

    Countrygirl I'm with Cheesus

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    The co-applicants of the UK FITNET trial say this in their Dutch FITNET study protocol

    when referring to the more severely ill, they state this:

    ,



    The co-applicants do not accept that ME is biological. That is clearly stated in their own papers upon which the UK version is based.
     
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  16. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    The statement about complete understanding being decades away is completely disingenuous. We don't fully recognise the causes of some other illnesses, but it doesn't stop them being taken seriously and spared the fiasco of unhelpful psychological therapies as a treatment. Moreover, it is unlikely to take decades to find a treatment that at least manages ME, or even better. They are as always playing down what is going on in the field.
     
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  17. Matthew Jones

    Matthew Jones Senior Member

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    Well, at least certain biological facts are acknowledged. Their narrative has changed for the better. It's still a big waste of money though and the logic that funds should be spend on this instead of real research because understanding the biology is too far away is completely illogical. Surely the further away the biological understanding is the more urgent it is to fund it!?! .

    My Message to the CBT researchers (if you are reading this)
    I ask you to deeply question to whether this research is really a priority or whether you are sucking up funding for something more useful. Are you holding back a biological breakthrough by running these CBT studies instead? Could your millions in funding be spent on finding real biological causes instead? Seriously, try CBT in something that actually has a psychological origin , stop robbing us of biological research. There is only a tiny amount of funding so how it is spent is of great importance to large numbers of very ill people.

    I ask you what is a fair percentage of CFS funding that should be spent on CBT research rather than biological? 10%, 30%? Because right now the majority of all of the UK funding is going into CBT. Do you think that is justified?
     
    Last edited: Nov 4, 2016
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  18. Molly98

    Molly98 Senior Member

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    I think this is a very valid thing to be asking.
    However, at the end of the day their jobs and careers are dependent on creating research proposals which bring in funding. If they don't bring in the funding to the Universities they will not stay in their positions for long, the will loose their contracts and other Universities won't want them either.. So we are unfortunately in a position where they are very unlikely to put morals and ethics before their jobs and financial security. It all comes down to money in the end and Universities are going to be struggling even more if we are leaving the EU which means more pressure for researchers to bring in the funding by any means. I am not excusing it, just bringing up this added dimension.
     
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  19. Large Donner

    Large Donner Senior Member

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    Especially if you are claiming a 65% cure rate by talking to a computer. Show me any condition biological or psychological where anyone would claim this crap and get away with it.
     
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  20. sarah darwins

    sarah darwins I told you I was ill

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    That's the thing, isn't it. The bottom line on FITNET. It's just pathetic, the kind of unutterably silly idea that gets pitched on Dragon's Den and dismissed with comments along the lines of "Please don't waste any more money on this".

    It makes me seethe when I think of it. I find it insulting that our money is going into something like this, supposedly in response to the disease that has wrecked my life for 15 years. £1 million could do so much good. And we get this crap.
     
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