‘Young people to get ME treatment in trial after success in Netherlands’ | The Guardian | 1 November 2016


There will be an item about this story on the BBC Radio 4 ‘Today’ programme later this morning.


From The Guardian, 1 November 2016. Story by Sarah Boseley, health editor.

Hundreds of children and young people are to get treatment for chronic fatigue syndrome for the first time, to see whether methods that have proved highly successful in the Netherlands can be adopted by the NHS.

Up to 2% of young people are affected by CFS, also known as myalgic encephalopathy (ME). But few get any treatment, and attempts to help have sometimes stoked the row over the causes of the condition. Activists on social media frequently denounce doctors who suggest that psychological issues play any part in the disease.

Treatment given to young people in the Netherlands has had remarkable results, helping 63% recover within six months and return to school and a normal life, compared with 8% of those who had other care.

The children are given cognitive behavioural therapy to understand and overcome the debilitating exhaustion that neither sleep nor rest can help. The sessions are conducted with a therapist over the internet, using Skype, diaries and questionnaires. This means children will be able to get treatment in their own homes in parts of the country where there is nothing currently available to them.

Esther Crawley, a professor of child health at Bristol University, said she would argue that the trial she is leading is not controversial. “Paediatric CFS/ME is really important and common,” she said. “One per cent of children at secondary school are missing a day a week because of CFS/ME. Probably 2% of children are affected. They are teenagers who can’t do the things teenagers are doing.”

Young people and their parents travel from all over the UK to get to her clinic, she said. “They have been travelling for hours. I can’t assess a child who has been travelling for hours.”

Online consultations and therapy go down well with young people. “Teenagers don’t want to see someone face to face,” she said. “They want to do stuff online. We use a lot of Skype. Teenagers like Skype. They can switch you off.”

The trial has the support of the Association of Young People with ME, whose chief executive, Mary-Jane Willows, said: “We desperately need treatment for children with ME that they can get wherever they are in the UK. Most children cannot have treatment even though treatment improves their chance of recovery. Children tell us they just want to get better.”

But Crawley knows the therapy will not please everyone. “I think we are definitely going to get some opposition, but the people opposing the trial are not my patients,” she said. The children and young people who had tried the online therapy loved it, she said, and the parents were thrilled that there was a treatment that might help them.

Like other health professionals treating patients with CFS, she has suffered verbal abuse from activists. “I cope most of the time,” she said. “Sometimes I think about giving up.” Then she sees a patient who has waited a long time for a diagnosis and who could be treated.

“It really bothers me these children are not being seen. I think it is tragic,” she says.

Crawley said she does not consider CFS a psychological illness. If it were, she said, more young patients would be expected to develop low mood or anxiety. But that does not mean psychological therapy will not help, she said.

Young people may need counselling on their sleep patterns, for instance. Those with CFS sleep for a long time because of the fatigue, but that results in poor-quality sleep, which makes them more tired. One of the things the intervention attempts to do is reset their sleep patterns, so that they sleep less but better. That has a real biological effect, she said, changing hormones, appetite and mood.

The trial, involving more than 700 young people, is the largest ever carried out concerning CFS. It will investigate whether the Fitnet (fatigue in teenagers on the internet) treatment programme is effective and value for money compared with “activity management” – information from therapists on how to manage their sleep and activity. Those in the Fitnet group, and their parents, will get information but be asked to work through 19 interactive online CBT modules. The children will be asked to answer questions and write diaries. They will have a weekly online appointment with their therapist who will review their progress and give advice.

The trial is being funded by the government-funded National Institute for Health Research and will examine whether the therapy helps young people and whether it is value for money for the NHS to adopt.


‘I WANTED TO SLEEP ALL DAY’


Emma, aged 14, first fell ill with what she and her family later found to be CFS in 2011, when she was nine. “I started to get recurrent illnesses. I was feeling really achy with a sore throat. I didn’t feel tired at first. Gradually it got to where I wanted to sleep all day,” she said.

It was very stressful for Emma and for her family because it took more than three years before she got a diagnosis. At one point they were going to the doctor every week. They were told it was a virus and to get over it.

It was not until January 2015 that she got a diagnosis. There was not a specialist in CFS she could be referred to. The breakthrough for her family was making contact with AYME, which helped design a programme “to retrain her mind and body – it was like retraining a newborn”, said her mother. For Emma, the social contact she got through AYME’s online forum with other young people suffering the same disease was also crucial. She was very stressed. “I thought I was never going to get better. That led to worrying about my future,” she said.

If cognitive behavioural therapy had been available, she would have taken it. She does not agree with those who say CFS is entirely a physical illness. “I think they are wrong. It would help to talk to somebody about it. I was stuck in the house for a long time,” she said. “It would help to cope with it.”

Emma – not her real name – missed year 5, a lot of year 7 and most of year 8 at school. “I always wanted to have high grades. I was really paranoid about doing badly,” she said. She refused to be held down a year and is now doing very well after home tuition. “I would say I’m completely better,” she said. “I’m back to school full-time – but when I get ill with maybe a cold I still sleep for a long time.”

9 thoughts on “‘Young people to get ME treatment in trial after success in Netherlands’ | The Guardian | 1 November 2016”

  1. “..an item about this story on the BBC Radio 4 ‘Today’ programme…”
    It was unbalanced propaganda – ditto Radio 5, later.
    Prof Crawley ‘does not consider CFS a psychological illness’ – but she wants to treat it with ‘psychological therapy’! Does she treat M.S., diabetes, and others with ‘psychological therapy’?
    Several times she referred to ‘exercise’ as part of the (mis)’treatment’ – that worries me; it should ring alarm bells and should have prevented ethical approval.
    Despite the young person who was featured denying full recovery, she was said to have recovered. Double-speak from the proponents?

    1. I agree. I’m shocked ME Ass have posted this without a warning.

      We need ME Ass to get off the fence and speak out against CBT.
      We are fighting to get NICE to change its advice following the disgraced PACE trials. Why are they not fighting for real help? Get rid of CBT

  2. The iron grip of the Science Media Centre is pretty blatantly obvious to those who know something of the politics behind the history of reportage on ME in this country.

    I am grateful to the very excellent Tom Kindlon and Joan Crawford for these letters in the Lancet, which point out the flaws in the original Dutch Fitnet trial. Spookily enough, as Dame Edna Everage would have said, those flaws are remarkably like those in our old Late-but -not Lamented friend the PACE trial, as Tom points out:

    “Three of the four thresholds used by Sanne Nijhof and colleagues (April 14, p 1412)1 for their post-hoc definition of recovery from chronic fatigue syndrome are virtually the same as the entry criteria. For example, 40 or more on the fatigue severity subscale of the checklist individual strength 20 (CIS-20) was equivalent to “severe fatigue” at baseline, yet once a participant scored less than 40 (the mean +2 SDs for a healthy population) they could be counted as recovered!”
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61324-5/fulltext

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61325-7/fulltext

    1. ME Ass. Please. Advise your members and supporters about the faults in the Fitnet trial.

      We need charities to defend and protect their members. We need charities to speak out against poor science which harms us,

  3. The problem with denying patients psychologically based treatment for CFS or ME is the fact that no treatment is then available if patient groups continue to campaign to have the treatments withdrawn, also what is the alternative in the mean time while we wait to become cleverer to usher in more effective physical treatment protocols?

    Even though it is wrong to continually ram CBT down the throats of patients where it can be at best ineffective and at worst bring on a relapse or leave the patient and the family feeling despair and isolation.

    The fact is in the mean time Cognitive Behaviour therapy is all we have got and to deny patients this therapy because certain activist don’t like the treatment because it failed for them or because they have a handy side line in objecting to about everything there is to object about inside the M.E. community, in which the detractors don’t seem to have any good ideas on how to treat the illness either and would prefer to allow the suffering to continue so as their egos can prevail in the environment currently, where there are very few treatment protocols available and medical centres where a firm diagnosis can be reliably by a consultant psychiatrist.

    1. Catharguy, you say:
      “..certain activist don’t like the treatment because it failed for them or because they have a handy side line in objecting to about everything there is to object about inside the M.E. community, in which the detractors don’t seem to have any good ideas on how to treat the illness either and would prefer to allow the suffering to continue so as their egos can prevail in the environment currently…..”

      Oooer , that’s a bit nasty. I think you’re falling into the trap of the portrayal of critics of PACE and so-on as “vexatious” “militant” “harrassing” – you may remember that this false depiction was roundly criticised by the Information Comissioner very recently:

      “A summary of the Information Commissioner’s submission argued that: “Professor Anderson’s ‘wild speculations’ about the possibility of ‘young men, borderline sociopathic or psychopathic’ attaching themselves to the PACE trial criticism ‘do him no credit’. Nor do his extrapolations from benign Twitter requests for information to an ‘organised campaign’ from an ‘adversarial group’ show that he has maintained the necessary objectivity and accuracy that he is required to maintain.”[1] The Tribunal’s majority verdict went on to conclude that: “It was clear that [Anderson’s] assessment of activist behaviour was, in our view, grossly exaggerated ”

      http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

  4. I have not had individual treatment with the NHS but I have had treatment with the Optimum Health Clinic. Their attitude is that ME is NOT a psychological illness, but that psychological methods can help to calm down the nervous system, allowing the body to heal itself. (I had other treatment as well, including mitochondrial testing). I did not recover fully, but I did make huge improvements. All diseases have a psychological element, for instance people are known to be more likely to succomb to a disease after a bereavement, even a physical disease such as cancer.
    It is well known that anxiety dampens the immune system. If children can be helped to lessen their anxiety, that’s got to be a good thing, even when it doesn’t bring results.
    However, and this is very important, AT THE SAME TIME we need to be doing the biomedical research so that those whose bodies are not able, for whatever reason, to recover from the disease, can have a pharmaceutical intervention.
    One of the fears of some of the critics is that money is going into these kinds of studies INSTEAD of biomedical research. It is up to the medical world to demonstrate that this is not the case.

  5. Agreeing to bad treatment is no help to us, I’ve had CBT. I was made worse. Permanently worse,

    Why would anyone think that bad treatment is better than no treatment? The fitnet research was flawed

    Get rid of the bad treatments. Bad treatments simply reward the people who do bad research. Let’s say no. No more. If they stop getting funding they will stop doing bad research.

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